What Do Disabled People Really Want?

Second in the series

Introduction

In the first blog in the series, I explained the purpose behind doing them.  The blog sought to outline key concepts discussed at a members’ meeting of the campaign organisation, Act 4 Inclusion (A4I) and consider some of the complexities involved in employing them.

Within this blog I wish to explore how disability and integration have been historically viewed within the struggle for disabled people’s emancipation.  From this enquiry, I wish to argue that the notion of ‘inclusivity’ can, if applied in a radical manner, mount a challenge to disablism that has been lost in the discourses around ‘integration’; however, it will also be asserted that this can be a means to an end, not an end in itself. (1) Woven into the discussion will be the promotion of the view that it is impossible to deliver what disabled people really want without constructing a truly transformative agenda.

It will be argued that by exploring the ideas of Vic Finkelstein and Derbyshire Centre for Integrated Living, alongside the A4I Vision, it will be possible to start to construct a transformative agenda. (2) The direction of travel being followed will be uncomfortable because it require us to interrogate deeply held ‘truths’ from within the disabled people’s movement.

Historical context: disability and integration within the struggle for emancipation

Most politically conscious disabled people have an understanding of the basic arguments that stem from the social interpretation of disability: that is, the exclusion from and marginalisation within mainstream social activity, is caused by the structures and organisation of society. Our experience of oppression and discrimination are the outcome of how we are seen and treated. It should go without saying that we want to change this situation, however, the tricky question is: how do we undertake this task?

In the presentation delivered to the members’ meeting, it was suggested that to be able to achieve A4I’s vision there was a need to develop an eco-social approach towards a new system of support which has its foundations rooted in the Social Model of disability and the disabled people’s independent living movement, but also with the added responsibility to understand and incorporate natural ecosystems into our way forward for social support.

With hindsight, I recognise that talking about the ideas rooted in the independent living movement could be misleading because, as I will explain in a while, there are political and ideological differences among disabled people in terms of what it is we are seeking to achieve. These differences are evident in the approaches taken by disabled people regarding independent living. In the early days of the disabled people’s movement the discussions around integration took place with a greater emphasis on the political priority of escaping segregated living. I have decided to drill down further into how social integration was seen by specific tendencies within the movement and provide some historical context. By doing this, I believe I can show commonality and differences with the thinking going on within A4I. It should be noted that the political and ideological differences that exist among disabled people extend into the ranks of disabled activists who adopt the radical social approach and I will be highlighting some of these differences in due course.

From its beginning, the modern disabled people’s movement had a dual purpose. UPIAS wrote for example:

“The Union aims to have all segregated facilities for physically impaired people replaced by arrangements for us to participate fully in society. These arrangements must include the necessary financial, medical, technical, educational and other help required from the State to enable us to gain the maximum possible independence in daily living activities, to achieve mobility, to undertake productive work, and to live where and how we choose with full control over our lives.” (3)

They sought to end the unnecessary incarceration of older and disabled people, whilst seeking support to undertake independent living. Was this realistic? As I see it, this was a challenge to the state and society. The word ‘independence’ refers to the right to control one’s life and not be subjected to segregated, dependency-making “care”. I see the social interpretation of disability as a platform for developing what I call ‘transitional demands’. In Marxist theory, a transitional demand either is a partial realisation of a maximum demand after revolution or an agitational demand made by a socialist organisation with the aim of linking the current situation to progress towards their goal of a socialist society. I believe the latter meaning can also be applied to how the early disabled activists articulated what they wanted.

UPIAS forward this argument:

“The cruelty, petty humiliation, and physical and mental deprivation

suffered in residential institutions, where isolation and segregation have been carried to extremes, lays bare the essentially oppressive relations of this society with its physically impaired members. As in most similar places, such as special schools, there are some staff and volunteers doing their best to help the residents. But their efforts are systematically overwhelmed by the basic function of segregated institutions, which is to look after batches of disabled people – and in the process convince them that they cannot realistically expect to participate fully in society and earn a good living.

This function was generally appropriate when special residential institutions first came into being, since in the competitive conditions of the time many physically impaired people could not even survive without their help. But now it has become increasingly possible for severely impaired people not just to survive, but also to work and become fully integrated, the need for segregated institutions no longer exists in the way it did. They have become seriously out of step with the changed social and technological conditions of Britain today.” (4)

I believe there’s a flaw in this argument and it has plagued disability politics ever since. Marta Russell in this long quotation both supports UPIAS’ assertion, but at the same time signposts to the flawed aspect of their argument. She wrote:

“Our institutions (particularly medical and social welfare institutions) have historically held disablement to be an individual problem, not the result of economic or social forces. They have equated disability with physiological, anatomical, or mental “defects” and hegemonically held these conditions responsible for the disabled person’s lack of full participation in the economic life of our society. This approach presumed a biological inferiority of disabled persons. Pathologizing characteristics such as blindness, deafness, and physical and mental impairments that have naturally appeared in the human race throughout history became a means of social control that has relegated disabled persons to isolation and exclusion from society. By placing the focus on curing the so-called abnormality and segregating the incurables into the administrative category of disabled, medicine bolstered the capitalist business interest to shove less exploitable workers with impairments out of the workforce.” (5)

The medicalisation of the body fed into the dominant ideologies that were to shape how disabled people were seen, but it also legitimated their treatment. Individualism and the contours around ‘normality’ were also part of this process of shaping the exclusion of disabled people.

Russell went onto say:

“This exclusion was rationalized by Social Darwinists, who used biology to argue that heredity (race and disability status) prevailed over the class and economic issues raised by Marx and others. Just as the inferior weren’t meant to survive in nature, they weren’t meant to survive in a competitive society. For 19th century tycoons, Social Darwinism proved a marvellous rationale for leaving the surplus population to die in poverty. Capitalism set up production dynamics that devalued less exploitable or non-exploitable bodies, and Social Darwinism theorized their disposability. If it was natural that disabled persons were not to survive, then the capitalist class was off the hook to design a more equitable economic system – one that would accommodate the body that did not conform to the standard worker body driven to labor for owning-class profit.” (6)

Here is the rub then, ‘the capitalist class was off the hook to design a more equitable economic system – one that would accommodate the body that did not conform to the standard worker body driven to labor for owning-class profit’. The point I am trying to make here is that the social relations disabled people have within capitalist societies are determined by various factors and there is a complexity that has been underplayed within disability politics and progressive movements. What is rarely openly discussed is the relationship between ‘the essentially oppressive relations of this society with primarily its physically impaired members’ in relation to the class struggle. I believe it is implicit within the social interpretation of disability, however, I also believe what should be understood as the dialectics of disability have been underplayed.

In the final blog of this series, I will discuss in more detail what I believe constitutes the dialectics of disability and why they should be situated within the context of employing dialectical materialism. Within Marxist theory it is argued that political and historical events result from the conflict of social forces and are interpretable as a series of contradictions and their solutions. In the blog, I will touch upon why I believe both dialectical and historical materialism offer us a method to develop a theory of disability as oppression and act as a contribution within disabled people’s emancipation struggle. (7)

The first phase of disability politics was developed primarily by physically impaired people who had been institutionalised. They recognised other groups were subjected to oppression which had roots in the same sets of social relations they had, but they did not explore the implications. (8)  Vic Finkelstein and Mike Oliver were always clear:

“….a social model of disability should assist us in gaining insight into the disabling nature of the market system.” (9)

This is not, in my opinion, how today’s disability politics employ a social model of disability. Before exploring this view of mine, let us go back once more to the roots of our two movements and consider similarities and differences.

How did we reach where we are today?

As previously stated, UPIAS was made up of people considered to be ‘physically impaired’, that is, having bodies that displayed ‘functional loss’. The usual definition of ‘functional loss’ is that it is the inability to perform standard working movements of the body with the expected excursion, strength, speed, coordination and/or endurance. What is contested however is the social construction of ‘impairment’ which is a problematical area of debate I wish to sidestep to a degree here, however, it cannot be ignored altogether. (10) UPIAS never denied the fact impairment reality existed or could be denied as a determining factor in the encountering of disablement, but what they challenged was the view that impairment reality was the direct cause of disabled people’s social exclusion and marginalisation. Thus:

“Our own position on disability is quite clear; and is fully in line with the agreed principles. In our view, it is society which disables physically impaired people. Disability is something imposed on top of our impairments, by the way we are unnecessarily isolated and excluded from full participation in society. Disabled people are therefore an oppressed group in society. It follows from this analysis that having low incomes, for example, is only one aspect of our oppression. It is a

consequence of our isolation and segregation, in every area of life, such as education, work, mobility, housing, etc. Poverty is one symptom of our oppression, but it is not the cause. For us as disabled people it is absolutely vital that we get this question of the cause of disability quite straight, because, on the answer depends the crucial matter of where we direct our main energies in the struggle for change. We shall clearly get nowhere if our efforts are chiefly directed not at the cause of our

oppression, but instead at one of the symptoms.” (11)

The roots of the social interpretation of disability come via responding to how society both ‘sees and treats’ people with significant physical impairments. It is the appraisal of bodies considered to be ‘impaired’ and the subsequent treatment of them which lies at the heart of the oppression disabled people encounter. Whilst what constitutes ‘impairment’ is an issue to be discussed, it is not central to the core argument forwarded by UPIAS because no matter what ‘definition’ is “accepted”, the baseline is how a given society socially constructs its meaning and the consequences that flow from this. The framing of impairment in terms of functional incapacity leads to certain groups being subjected to ‘unequal and differential treatment’. Unless an ‘impairment’ is deemed present, the individual would not find themselves assessed as to whether they should be considered ‘disabled’ or not.

Negative interactions between disabled people and a raft of environments, produce disabling situations; however, these interactions have two sides to them. The dialectic nature of disability involves addressing the relations that are seen to exist between impaired bodies and social environments. Hence Paul Abberley argued:  

“It is crucial that a theory of disability as oppression comes to grips with this `real’ inferiority, since it forms a bedrock upon which justificatory oppressive theories are based and, psychologically, an immense impediment to the development of political consciousness amongst disabled people. Such a development is systematically blocked through the naturalisation of impairment.” (12)

The question of the assumed naturalisation of impairment has been inadequately addressed by those who developed the social interpretation of disability because in the beginning it was thought that all that was required was to see ‘impairment’ as a given, and from this stance, break the causal link between impairment and disability. (13) The lack of explanation of the dialectical nature of the relations between impairment and disability have had negative consequences for disabled people’s emancipation struggle. It for this reason, I want to particularly focus upon the second point Paul makes about our ‘disadvantages are dialectically related to an ideology or group of ideologies which justify and perpetuate the situation.’ What does this mean?

The development of dominant ideologies and practices in relation to disabled people did not come from out of thin air. At the heart of disabled people’s emancipation struggle, in my view, is the conflict between the needs of capital versus the needs of disabled people. This conflict however throws up a series of contradictions not least of which is the expressed desire found within disability politics to be part of existing social relations; that is, to participate in mainstream social activities, when there is little motivation to accommodate those viewed as lacking social worth due to having ‘inferior bodies’ (sic).

Taken at face value, I remain unconvinced that true emancipation in the form of either ‘inclusion’ or ‘integration’ is fully achievable under Capitalism. I do however believe it is possible to seek betterment by fighting for inclusive practices; whereas social integration as it is currently spoken as being ‘full participation’, on the other hand, I view as neither feasible nor desirable within existing social relations. UPIAS placed an emphasis upon obtaining access to employment because it granted a certain degree of financial autonomy and increased social worth; whilst undoubtedly true, what is glossed over is the nature of the world of work, its exploitative and dehumanising features. The ability of disabled people to obtain access to employment turns on the type of interaction that is possible between impaired individuals and working environments. Factors, for example, such as accommodation (inclusive practice) and the needs of market forces will always be struggled over within capitalism.

The idea of betterment therefore acknowledges that we can take steps to improve given situations, for example, fighting for an end of enforced segregation or institutionalisation; but nonetheless within a wider strategy of seeking to transform the entire system.

Disability politics have been bedevilled by endless debates relating to concepts and language. Language is complex as ‘words’ often have different meanings and usage. Gramsci, as an example, wrote about how hegemonic power of ruling groups can absorb radical concepts by emptying them of their original meaning and inserting ideas that embrace the status quo. We saw New Labour do this with ‘Personalisation’ which corrupted Independent Living and person-centred planning. (14)

What this led to is a situation where today there are disabled people who want to “buy” their way into society by being “employers” of ‘personal assistants’. Rather than transform society and promote collective ways of developing community based services using coproduction and inclusive practice, we have seen disabled people collude with their oppressors by trading in their politics and principles for a piece of action within the capitalist marketplace. I have spoken about this elsewhere. (15) I know this sounds harsh, and I believe this situation has emerged for a number of reasons, but the adoption of this type of individualised solution has had a detrimental impact upon disabled people’s ability to struggle for an inclusive society. A major factor is the nature of disabled people’s oppression and the hegemonic hold of dominant ideology.

As a former planning officer within Social Services, I understand the attraction of ‘direct payments’ as the traditional services were/are not fit-for-purpose. But this ‘attraction’ masks the oppressive nature of NHS and Social Care direct payment systems and the exploitative ways disabled people and PAs are governed by market forces. I hate seeing the painful way individuals are being set up to fail. I recall what Vic wrote:

“The promoters of ‘independent living’ in a market economy can’t complain that they get what they wanted (to the delight of privateers in the new Blatcherite Labour Party). When disability groups became ‘independent’ they needed to get on with the job and compete against other ‘independent living’ service providers. If the competition happens to be well-established charities – well so be it – let the most competitive win! That’s what ‘independence’ means in the capitalist system. It’s all

about ‘efficient’ service provision (meaning who has the cheapest product to sell). The market has no need for non-productive groups such as ‘political’ organisations of disabled people.” (16)

What he is referring to is what I regard to be the second phase of disability politics. It was where ‘Janus politics’ were developed and led to the abandonment of the radical social interpretation of disability in favour of a more accommodational approach. As just stated, there are many root causes for this shift, but I want to highlight just a few of them that are relevant to this discussion. The shift from the first to second phase coincides with the development of a new social movement. Batliwala (2010) stated in relation to how social movements shape collective power:

“Processes that build the collective power of an organised constituency of excluded, marginalised, oppressed or invisible people, around a change agenda that enables them to access the full body of human rights, challenge the distribution of wealth and control of resources, challenge dominant ideologies, and transform social power relations in their favour.” (17)

What is significant here is the emphasis that Batliwala puts on the processes involved in forging ‘collective power’ to enable social movements to mount challenges around change agendas. Oliver and Barnes suggest the British movement did engage in challenges of this nature, however, towards the end of a section on social movements in their book, they write:

“Overall, the disabled people’s movement has utilized both radical and conventional politics. The balance between the two has varied historically; currently those committed to wide-ranging social change have lost ground to those supporting political involvement in the established institutions and trying to break down disabling barriers from within the system.”

They however go on to say, “Of course, there is no ‘royal road’ to ‘independent living’ or ‘empowerment’, and no user’s manual, overarching set of political tactics or universally applicable form of self-organisation; nor can there be.” (18)  

Across the globe it is true that the emancipation struggle of disabled people will take a variety of forms due to differing economic and social conditions, and therefore disability politics cannot be totally ‘universal’ in their nature as they must relate to material conditions and situations; however, there is an additional point. The considerable variations in political analysis and strategies among disabled people nonetheless have to be viewed in context because differing political and ideological positions have significant implications for the development of disabled people’s emancipation struggle.

It is necessary to consider the possible implications of there being considerable variations in political analysis and strategies among disabled people as it ties into how we understand ‘what disabled people want’. In simple terms, the 1970s saw disability politics primarily focus on the location of physically impaired people. It was a movement to push against institutionalisation and segregation; it was argued, as we saw, that disabled people could be supported to live in the community, secure employment and contribute to mainstream social activities. It was a call for ‘integration’ into society. Two important observations need to be made:

• Disabled people want to be integrated/included in the mainstream of a society that does not respond to their needs and interests

• Disabled people want their impairment reality taken into account, but the radical social interpretation of disability rejects the causal link between impairment and encountered social disadvantage (disability)

Colin Barnes in 2004 makes a very telling point when he wrote:

“Due largely to the intensifying politicisation of disability by disabled people and their organisations during the 1980s and 90s, both in the UK and elsewhere, the phrase ‘independent Living’ has been increasingly evident in policy documents produced by health and social service

professionals in the context of ‘community care’ services for disabled people. Usually focusing on professionally led assessments of functional ability and inability, these initiatives bear little resemblance to the principles and practices of the international disabled people’s movement.” (19)

The corruption of the concepts from the disabled people’s movement is something I have written about in a variety of spaces. I have noted a number of paradoxical situations emerging from the late 1980s onwards. Barnes mentions the intensifying politicisation of disability, which is undoubtedly true, however, it was not necessary undertaken in a comprehensive manner due to both the political terrain at the time and the nature of the disabled people’s movement as a social movement. Finkelstein made this observation:

“The result is that Mike and Colin do not offer a single interpretation of what happened in the 1990s structures of society, ‘outside’ there, which facilitated the rising dominance of the ‘rights based approach’ in the disability movement, ‘inside’ here. Far from making a credible criticism of the disability movement’s misleading over-emphasis on ‘civil rights’ they

adopt the same ‘inside out’ approach in their analysis!” (20)

I take my share of criticism for supporting an over-emphasis on ‘civil rights’ however I believe I did raise a critical voice within the movement. I did, and I continue to argue, that disabled people need to adopt a methodology which explores ‘out there’ as a crucial part of furthering the struggle. In coining the phrase, ‘Janus politics’, I was describing the tendency to look back in order to ‘borrow’ the language and concepts from the radical interpretation of disability, but in taking them forward their original meanings were ditched for ones which served the status quo. I wrote:

“It is necessary to question the extent to which direct payments, independent living and now personalisation have the dynamic meaning of disability as understood by Finkelstein and UPIAS. What we have seen is a set of accommodating ‘interpretations’ employed by more liberal and reformist disabled activists and sections of the disabled community, which in turn has allowed service providers and the state to exploit this situation.”  (21)

From the mid-1980s we can see a proliferation of self-organisations of disabled people which were not impairment specific. The British Council of Organisations of Disabled People grew in a decade from fifteen to a hundred and twenty organisations before its decline. This was the height of the disability/disabled people’s movement. (22) The expansion of self-organisation was supplemented by the popularisation of the social model of disability primarily through Disability Equality Training. Elsewhere I have offered a critique of the growth of this new social movement and its implications. (23) There were a number of social, ideological and political shifts over this period. The focus shifted from deinstitutionalisation and being an emancipation struggle to one that centred upon independent living and securing civil and human rights. Finkelstein expressed his criticism when he wrote:

“In the 1990s Mike Oliver’s view, on the other hand, was and

has remained, that the ‘social model of disability’ and ‘civil

rights’, alongside with ‘independent living’ are harmonious

components in our struggle for emancipation.

‘In the last 30 years we have begun to shake off the dead hand

of charity … In so doing we have built a political and social

movement that does offer us the very real possibility of

“changing our futures” …’ (Campbell and Oliver 1996). Mike

maintains that these advances were founded on three big

ideas: “the social model of disability, independent living and

civil rights”.

I don’t agree. I don’t see how ‘components’ of a model can be

given equal value to the model itself!” (24)

As I stated in the previous blog, I agree with this point of view because as he went onto explain, the de-coupling of ‘components’ or aspects of the radical analysis, led to weakening the argument for radical social change. I have argued that the demise of the disabled people’s movement turned upon this issue:

“In fact the radical social model of disability gave us the words to describe the way society is constructed so that we become disabled. It was an outside-in approach to our situation; words to describe our experiences of inequality is an inside-out approach (i.e. a case file

approach). The former is a materialist approach and the latter an idealist approach. The idealist approach is perfectly at home with the ‘rights’ approach that is increasingly dominating the British disability movement and characterises the USA movement.” (25)

I believe the article by Francis Hasler in 2003, Philosophy of Independent Living, demonstrates the muddled thinking that resulted from the gradual shift in thinking and practice from the 1990s onwards. I quote at length:

“European Network on Independent Living, focus on personal assistance as a key component of independent living. This is because lack of personal assistance is so closely linked to being forced to live in institutional care. ENIL was set up in 1989 at a conference in Strasbourg. This conference resolutions says:

‘This conference has focused on Personal Assistant Services as an essential factor of Independent Living, which itself encompasses the whole area of human activities, e.g. housing, transport, access, education, employment, economic security and political influence.

We, disabled people, recognising our unique expertise, derived from our experience, must take the initiative in the planning of policies that directly affect us.

To this end we condemn segregation and institutionalisation, which are direct violations of our human rights, and consider that governments must pass legislation that protects the human rights of disabled people, including equalisation of opportunities.

We firmly uphold our basic human right to full and equal participation in society as enshrined in the UN Universal Declaration of Human Rights (extended to include disabled people in 1985) and consider that a key prerequisite to this civil right is through Independent Living and the provision of support services such as personal assistance services for those who need them.’

This resolution locates independent living firmly within the framework of human rights. This is not about doing good to disabled people, or providing them with welfare, it is about ensuring that disabled people can exercise their human and civil rights, equally with non-disabled people. The Strasbourg resolution expresses independent living philosophy in a form that can be understood by governments. Its stress on human rights also expresses another facet of independent living: all human life is of value. It does not matter what sort of impairment you have. No-one is so impaired that their life does not count. In expressing this aspect of our philosophy in concrete form independent living movement has had to battle the way in which social welfare services divide and classify disabled people. In the UK, for example, people with intellectual impairments are classified as having ‘mild or moderate or severe’ learning difficulties. Assumptions are made about what a person with severe difficulties can or cannot do, and they are rarely offered the opportunity for independent living.” (26)

To move forward, I believe disabled people need to clarify exactly what it is that they want. Attempting to unpack Francis’ article might prove a useful exercise. This said, we need to place such an exercise within the context of how the idealist approach derailed the Movement as a whole.

In 2004, Andy Rickell, Director of the British Council of Disabled People, wrote:

“Basic rights are specifically emphasised in disabled people’s terms including those of life, freedom of movement (including an end to institutionalised forms of provision for disabled people), social and political participation including self-organisation, independent living, sexuality, choice and control over our own lives, bringing up our own children, privacy and freedom from media intrusion, to express an opinion and to be heard, independent advocacy (including legal representation), and freedom from disablist humour and behaviour.” (27)

There is nothing here to disagree with, however, it was presented as a hotchpotch of ‘basic demands’ which are in fact a mixture of civil and human rights. The collapsing of the two types of ‘rights’ together does have serious implications in general, and specifically for our understanding of disablement and the development of disabled people’s emancipation struggle. Human Rights are some basic rights that should be given to every human being in the country, whereas main aim of civil rights is to give personal rights to an individual. Civil rights protect individual citizens from discrimination and grant certain freedoms like free speech, due process, equal protection, the right against self-incrimination, and so forth.

This is why the Disabled People’s Movement got in a muddle in the late 1980s and early 1990s because it demanded anti-discrimination legislation, but thought it could address disablement, seen simply as ‘institutional discrimination’, at the same time. Marie Barile outlines the impact of disablement when she wrote:

“Inequity occurs when the social structures and spaces, social norms, culture and the tools of social interaction are constructed without taking differences, and therefore, equity, into account. Inequity, or the application of uniform standards, results is a singleton society built on the premise that everyone is the same and that those who are not must either learn to live within the structure established for the majority or perish.” (28)

This is why issues around understanding the nature of disablement, the impact of disablism, have a direct bearing upon how integration and inclusion are understood. As I have said before elsewhere, Finkelstein hit the nail on the head when he said:

“The ideological problem facing the ….movement….from the 1990s onwards was whether the social model ….was still relevant in guiding our struggle or whether social changes had advanced so far that the original model no longer reflected the social context in which it had been created? Is the ‘rights’, or ‘potpourri’, model of disability now more in tune with the market economy expanding into the health and social services sector of society? Was the social model….really understood?” (29)

The reason I have spent so much time and space on ‘how did we reach where we are today?’, is that I believe that it is impossible to move forward without having a firm grasp of where we have been. The work of A4I, ROFA and other bodies is hampered by the fact that few disabled people, especially the activists, have a clear radical vision for the future.

What we see is a fragmentation of disability politics and an array of interpretations linked to concepts. The counter-hegemonic power of the social interpretation or Social Model has been dissipated for the reasons outlined above. The demand for “rights” therefore masks the myriad of ‘meanings’ that lie behind this call. How then do we move forward, seek clarity, and determine what disabled people really want?

It might not be possible to put Humpty Dumpty back together again or sensible to attempt square the circle, however I believe the journey A4I and others want to make is worth setting out on. As Finkelstein implied, we are charged with the task of understanding how all the components of a social approach towards disability fit together to inform disabled people’s emancipation struggle. The ideological questions surrounding the debates on developing ‘integrated’, ‘independent’ or even ‘interdependent’ living, influence how we define the various concepts involved. By exploring disabled people’s social situation we may be in a better position to advance our journey. It is these ideological questions that I now wish to focus upon in the third blog.

Notes

1. Northway, R. (2002) ‘Integration and Inclusion: Illusion or Progress in Services for Disabled People?’ Social Policy & Administration, Volume 31, Issue 2 pages 157-172

• Finkelstein, V. (1999) Professions Allied to the Community (PACs) I

Click to access finkelstein-pacall.pdf

     Davis, K. (1984) NOTES ON THE DEVELOPMENT OF THE                                                                                                                             

     DERBYSHIRE CENTRE FOR INTEGRATED LIVING (DCIL)

https://disability-studies.leeds.ac.uk/wp-

      content/uploads/sites/40/library/DavisK-earlydcil.pdf

• UNION OF THE PHYSICALLY IMPAIRED AGAINST

SEGREGATION (1974) POLICY STATEMENT page1

Click to access UPIAS-UPIAS.pdf

• UPIAS (1974) page 3

• Russell, M. (2019) Disablement, oppression, and political economy

     Originally published: Socialist Project (August 7, 2019 ) 

         Disablement, oppression, and political economy | MR Online

• Russell, M. (2019)

• Ridenour, J. & Ruth, R. (2014) Dialectical Materialism, Encyclopedia of Critical Psychology, Springer New York

• UPIAS (1974) page 7

• Finkelstein, V. (2001) THE SOCIAL MODEL OF DISABILITY REPOSSESSED page 4

1. It is often argued that the Social Model ignores impairment,   

         however, this is a misinterpretation of what the model was  

         designed for. The personal restrictions i.e. impairment reality is

         not, as Oliver says, it’s focal point. The imposition of disablement

         impacts upon how far, and in what ways, differing groups of

         disabled people can participate within society. Addressing social

         support is both a policy and practical issue.

1. UPIAS, page 4.

1. Abberley, P. (1987) ‘The Concept of Oppression and 

    the Development of a Social Theory of Disability’ 

    Disability, Handicap and Society, Vol. 2, no.1, 160 – 178; page165

1. See Thomas, C. Rescuing a social relational understanding of

    disability, Scandinavian Journal of Disability Research

    Volume 6, 2004 – Issue 1

1. Williams-Findlay, B. (2015)  Personalisation and self-

    determination: the same difference? Critical and Radical Social  

    Work, Policy Press pages 67 – 87

1. Williams-Findlay, B. (2019)The Disabled People’s Movement in the

    Age of Austerity: Rights, Resistance and Reclamation, Resist the

    Punitive State, Grassroots Struggles Across Welfare, Housing,

    Education and Prisons, Edited by Emily Luise Hart, Joe Greener

    and Rich Moth, Pluto Press

1. Finkelstein, V. (2007) The ‘Social Model of Disability’ and the            Disability Movement, page 12

1. Batliwala, S. (2010) ‘All About Movements’, presentation at the   CREA South Asia, Movement Building and Human Rights Institute, Kathmandu, Nepal

1. Oliver, M. and Barnes, C. (2012), The New Politics of Disablement,         London: Palgrave Macmillan, page 174/5

1. Barnes, C. (2003) Independent Living, Politics and Implications

https://www.independentliving.org/docs6/barnes2003.html

• Finkelstein, (2007), page 7

•  Williams-Findlay, B. (2015) page 83

• Figures from a speech made at the National Disabled People’s Summit held on Saturday (4th November 2017) organised by the National Education Union, Reclaiming our Futures Alliance (ROFA) and Disabled People Against Cuts (DPAC).

• Williams-Findlay, B. (2021) Are there four cornerstones of disability politics? Part One  More Than A Left Foot – Thoughts of a disabled left-wing activist (home.blog)

• Finkelstein, (2007) page 6

• Finkelstein, (2001) page 4

• Hasler, F. (2003) Philosophy of Independent Living

https://www.independentliving.org/docs6/hasler2003.html#:~:text=Philosophy%20of%20Independent%20Living%20Hasler%2C%20Frances.%202003.%20The,needs%C3%A2%E2%82%AC%C2%9D%20of%20independent%20living%20identified%20by%20Derbyshire%20CIL.

• Rickell, A. (2004) BRITISH COUNCIL OF DISABLED PEOPLE

         OFFICIAL SUBMISSION ON DRAFT DISABILITY BILL

https://publications.parliament.uk/pa/jt200304/jtselect/jtdisab/uc352-ix/352we02.htm

• Barile, M.  (2003) ‘Globalization and ICF Eugenics: Historical coincidence or connection? The More Things Change the More They Stay the Same’, Disability Studies Quarterly, Spring, Vol. 23, No. 2, pp. 208-223, http://www.cds.hawaii.edu/dsq.

• Finkelstein, (2007) page 14

What Do Disabled People Really Want?

Third in the series

Introduction

The focus of this third blog in the series is to consider aspects of the perceived differences disabled activists saw between independent versus integrated living. One of the reasons for writing this blog is that I believe it enables us to gain insights into the philosophical, ideological and political differences inside the disabled people’s movements. In my opinion the differences are not simply conceptual ones but go straight to the core issue: what do disabled people really want?

In this blog it is not my intention to come down on one side or the other. I believe the general contradiction I posed in the first post remains within both camps: is disabled people’s emancipation achievable within capitalist society? The second half of this blog concerns itself with what attitude we should take not only towards the concepts of integration and inclusion, but how either might sit within a transformative agenda.

Independent versus integrated living

Ken Davis in NOTES ON THE DEVELOPMENT OF THE DERBYSHIRE CENTRE FOR INTEGRATED LIVING (DCIL) gives us an insight into the early days of constructing British disability politics. He begun by explaining that:

“….the newly formed Derbyshire Coalition of Disabled People suggested the establishment of a Centre for Independent Living in the County. In

a significant step, the Coalition sought and obtained the in principle support of the County Council for the proposal. This set the scene for a collaborative approach to the development of practical services and facilities which are needed if the IYDP aim of ‘full participation and equality’ is to be achieved for all disabled people.” (1)

This was similar to what occurred in Birmingham three years later when Birmingham Disability Rights Group approached the City Council about establishing a Disability Resource Centre. (2) In the case of the Coalition they were conscious of the need to review the philosophy and practices of the independent living movement as it had developed throughout the Seventies in the USA in order to relate it to the development of the work undertaken by the disabled peoples’ movement in Britain over the same period. As Ken informed us:

“Centres for Independent Living have been the response of disabled people in the United States to their exclusion from full social participation. …. Disabled people themselves run services relevant to their self-determined needs; people with all kinds of impairment are involved; services and facilities help disabled individuals achieve their own life-choices.” (3)

Ken goes on to make an important observation that the newly created movement due to the existence of our Welfare State took a different form to that of their counterparts in the USA.

“The call was not for control of their own services through ‘independent living centres’ or their equivalent, but rather for the State to provide better benefits or other services. The assumption was that more money or better organisation of existing resources would solve the problem of our exclusion from mainstream social activity. Some disabled people, however argued strongly that such an administrative approach would be quite wrong and as the movement developed the issue of control over our own lives became paramount.” (4)

The Coalition in line with the thinking of UPIAS fully accepted that disabled people need help to overcome disability [social restriction], but in addition, held the view that appropriate aspects of professional practice can be potent and productive elements in this process. I believe this recognition has become lost over time and there is an unhelpful ‘anti-professional’ tendency among some disabled activists. They tend to collapse together the management of professional theory and practice with the knowledge and activities in the field thereby throwing the baby out with the bathwater. What this does is undermine our ability to gain allies, build alliances, and create progressive forms of coproduction.

Another significant observation made by Ken and DCIL was:

“The independent living movement has operated as a positive inspiration beyond its own boundaries. But the removal of barriers, per se, is not particularly progressive and may even generate oppressive, practices in the process. The ILM will become a genuinely radical current within the wider movement when it inquires more searchingly into the causes of the barriers it seeks to remove. This requires development of an historical perspective and a more searching analysis of the social relations between disabled and non-disabled people.” (5)

This is precisely the message I have sought to deliver over the last decade with reference not only in relation to the role of the ILM, but also the Social Model of disability and disability politics in general. (6) Unless we analyse the nature of the society that exists, it will be impossible to address the root causes of disabled people’s social oppression. My argument comes through my understanding of historical materialism and its use of dialectics.

The underplaying of the need to develop an historical perspective and a more searching analysis of the social relations between disabled and non-disabled people has contributed to the divisions which appeared within the UKILM. How integration was viewed in the early 1980s compared to today has to be placed within the context of how disabled people see their social positioning within society.

The questioning of the use of the term “independent living” has always existed because there are problems with what ‘independence’ means. Unlike Reclaiming Our Futures Alliance (ROFA), who grappled with whether to retain the term or not. ROFA decided to stick with it, whereas DCDP opted for a different path. DCDP acknowledged that mainstream interpretations of ‘independent’ differed significantly from definitions put out by those who identify with the ILM; they nonetheless believed that because the raison d’etre of the movement was crystallised around the issue of “independence”, this would itself eventually prove to be a barrier to making progress. They concluded:

“As a result, the ILM has had no option but to choose its own definitions since the world in which the ILM seeks to participate is often confused as to the purpose of the movement.” (7)

They also place the word ‘independence’ within the socio-political and cultural context of American society’s commitment to promoting ‘rugged individualism and untrammelled personal freedom as the epitome of human development’. Years later, Finkelstein made a similar point when he argued US IL corresponded to “a basic commitment to the American capitalist system with its free market, pluralist ideology”. (8) Here then is a major schism, however Ken stated:

“For the Americans however the term was apparently their considered choice and, within the status quo, it was nevertheless a radical position for them. For disabled people here in Britain however, we too have had to make a conscious choice, and in Derbyshire the term ’integrated living’ has come to be chosen as representing a less confusing as well as more progressive description of what we are about in establishing DCIL.” (9)

I believe it is important to try and understand the difference in approach from a political stance and how this then impacts on working for social change. Ken argues both terms inevitably carry deeper, symbolic messages with the fundamental point being that:

 “’Integrated Living’ implies a commitment to society: ‘Independent Living’ implies a commitment to self. It may be argued that the latter is a vital corrective for disabled people whose personal development has become subject to the control of others. It may be argued that it is a potent motivator to hold up the idea of independence before those who are denied It. However, the more one attempts to explain what ‘independent living’ is, paradoxically, the closer one comes to discussing the concept in terms of integration.” (10)

Ken also highlights a tension which remains problematic in my opinion when we try to develop our arguments around personal and collective rights and freedoms. He wrote:

“For example, ‘independent living’ is at once described as a process of ‘identifying choices and creating personal solutions’, and as the ‘quality of life attained with help’. In other words, personal choices for disabled people can be sterile in the absence of the help necessary to make them a reality. Introducing help is to introduce the realities of dependence and interdependence which are the very building blocks of integration.” (Emphasis – added BWF)  (11)

Having choice and control over lifestyles is conditioned in most instances by the social relations that exist for individuals and distinct groups within society. To negate this reality prevents us from understanding how oppressions manifest themselves. It is a core aspect of the social interpretation of disability – that, unless we break the causal link between impairment and encountered social restrictions (disability), then we negate the existence of social oppression. We end up ‘blaming’ the individual’s body for their social situation, rather than arguing for the creation of new social relations that would accommodate diverse bodies and lifestyles. This is the challenge and at the same time tension: how do we create new social relations within a society reliant on inequalities and exploitative social relations?

Ken’s article proceeds to consider potentially destructive connotations that can lie behind certain perspectives on “independent living”. Within capitalism, the power of ‘individualism’ has always been extremely strong, but particularly so within the doctrine of Neoliberalism. This is why it is vital to be clear as to what ‘choice and control’ means in terms of personal and collective rights and freedoms. Ken recognises the tension that exists when he writes:

“To seek the ability to decide and choose what one personally wants, to seek to assume and establish self-control and self-determination are potent mental constructs which can have devastating effects in the real world. For example, it can lead disabled people into using human and other resources simply as the means to achieve personal ends, to be discarded or changed as the process of identifying personal choices and creating personal solutions also changes. In turn, it can lead non- disabled people to allow their able-bodiedness to be used as mere mechanical extensions of our own physical inability to translate thought into action.” (12)

Personally, I find these words extremely chilling as they resonate with my own thinking about the current demands made by particular groups of disabled people and the politics that underpin them. Like DCDP, I question aspects of the culture within the ILM where it seems to collude with dominant ideologies and practice. If the focus is indeed on ‘self’, then implicit within this prioritisation is the possibility of a lack of true commitment to all things outside oneself, except those which serve immediate ends. The psychological, social and ecological consequences of this mode of thought are all too obvious in today’s world.

The vision of A4I works from the belief that the true focus has to be on “equality of opportunity and the full participation of disabled people in everyday life in the mainstream of society” (13) It has been my opinion that this has been the existing description of what “independent living” means. It is interesting, therefore, to discover that DCDP viewed this focus as being “really about integrated living.” In their opinion this latter focus contains a commitment to notions of unity, mutuality and wholeness. (14) Later, I will consider how best to express these notions, along with the idea of equality of opportunity and the full participation, within the context of inclusive practice and dialectical thinking. (15)

I am therefore sympathetic to the opinion that it “is easy to see how misunderstandings occur when these contraposing views are attempted to be contained within the one ‘philosophy’ of independent living.” (16) Before proceeding to explore what DCDP meant by ‘integrated living’ it is important to acknowledge that the notion of ‘inclusion’ was not as established as it is now when Ken wrote his paper. The work Sandra Daniels, Dorothy Gould and I have done in relation to the ROFA position paper, ‘Independent Living for the Future’, which outlines their vision for a national independent living service, exposed these contraposing views. (17) Whilst supportive of the idea of a national independent living service, I remain critical of the lack of clarity that exists because the current vision straddles the two views presented in Ken’s paper.

Returning to Ken’s paper, it is important to understand how DCDP viewed what they meant with the use of the term “integrated living” and how it shaped the work of the Derbyshire Centre for Integrated Living (DCIL). Ken wrote:

“The use of the term ‘integrated living’ is an attempt to make clear and get in context both the end and the means of the DCIL. It aims for the full social integration of disabled people and it seeks to achieve it by disabled and non-disabled people working together. …. The DCIL is also integrated into a strategy for the development of Social Services which also has as its aims the integration of disabled people into the social, economic and political life of the County. In turn, this strategy is being jointly developed with the Health Authorities, and DCIL is seeking also to integrate representation from other statutory and voluntary bodies into its management structure. The commitment to integration is being pursued both in theory and practice.” (18)

What is striking about this approach advocated by DCDP and DCIL is that I could quite simply substitute ‘inclusive’ for ‘integration’ and leave the rest of the text unaltered and it would sit quite comfortably within the framework of the A4I vision. So, are we simply playing with words or semantics? I do not believe we are and I hope to able to explain why I hold this view. Before making my case, I want to add an additional consideration. It is important, I believe, not to view the approach advocated by DCDP and DCIL in isolation but to link it with the work undertaken by Vic Finkelstein. (19) It is not practical to critique Vic’s position here however the following quotation captures its essence:

“While, in many respects ‘care’ can be interpreted as irresolute support it would be incorrect, in my opinion, to regard the availability of care as having no relevance to disabled people, whatever their age. The real challenge is developing appropriate mainstream community services based upon equal opportunities for all, is winning over service users, providers and policy makers to the notion of disentangling appropriate skills located in the training and qualifications of the current caring professions together with the hitherto unknown and neglected skills that may be informed by a support paradigm and repackaging these into new community based professions.” (20)

He originally spoke of this model of provision in terms of it being a  ‘resource consultancy’. He put forward the view:

“The new community worker (Resource Consultant) would need to be conversant with care and support skills which are at the service of aspirant citizens who face social and physical barriers in achieving their personal goals. This lifestyle orientation would be geared towards assisting people attain their personal goals and aspirations. The focus of any identification or assessment procedure would not be on the origin and meaning of an individual’s deficits but making resources available for future goals. This could not be guided by any stereotype which sees disabled people in terms of pre-ordained dependent lifestyles. Unravelling the care and support components of community based assistance and repackaging the exposed skills more appropriately according to the perspectives of the principle resource users could generate more profound opportunities for users to contribute truly innovative approaches to the services that they use. This could create a mutually healthy learning relationship between disabled people and service consultants.” (21)

Vic developed his thinking further, and while I would question aspects of his proposal, I am broadly supportive of what he sought to achieve. Unfortunately to date, the UKILM has not considered Vic’s approach seriously because, like the A4I’s vision, it marks a radical departure from what currently exists within Adult Social Care and thinking within UKIL practice; therefore it sits as a bridge too far. One of my personal aims is to introduce Vic’s thinking into the dialogue around transforming Social Care and Independent Living.

There is one further issue raised by Ken’s paper that relates to the way we need to develop our thinking. Within DCIL’s approach towards ‘integrated living’, which I personally view as a form of ‘coproduction’, there is a vital operational consideration that outlines the Centre’s relationship with the Coalition. Ken wrote:

“One reason is that the Coalition has recognised that a mixture of ‘consumer advocacy’ and service provision within one organisation can be counter- productive. DCDP and DCIL are thus legally separate, autonomous bodies and each can pursue separate roles with the same overarching aim. DCIL will not have to worry about ‘biting the hand that feeds’ its service provision role.

Choosing to develop these practical services and facilities according to a collaborative rather than a separatist model, was consistent with a basic principle of ‘integrated living’ – which recognises that our full social integration requires that services themselves must be integrated in the method of their design, delivery and control. But also offered an opportunity to introduce a level of accountability into service provision which did not hitherto exist.” (22)

In the late 1980s Birmingham Disability Rights Group held a similar position in relation to the Birmingham Disability Resource Centre. Operating a division in purpose however does not mean there should be no relationship between the two bodies. The right to representation from BDRG on the BDRC management board was in the constitution. It nevertheless has political consequences because there is a need to address the difference between operating self-organised representative advocacy and service delivery.

The final observation I wish to make in relation to Ken’s paper is how the following quotation highlights contradictions and tensions that run through the entire length and breadth of disability politics. Once again it brings into focus what I view as the dialectical nature of our struggle – addressing what we want by addressing at the same time the things which prevent us from achieving our goal. Ken argued:

“DCIL is obviously concerned with providing or encouraging the means of overcoming disability but the concept of ‘integrated living’ requires that the task is approached in a particular way. It requires us to become ever more aware of the historical process which has produced the phenomenon we are seeking to overcome. It requires us to recognise that disability is the product of a particular social relationship between disabled and non-disabled people which cannot be cured by isolationism or separatism. It demands that we enquire into the causes of disability and that we reject all the varied devices which deny the participation of disabled people in contemporary social life.” (23)

To overcome disability, which is the removal of the social restrictions that cause disabled people’s exclusion from and marginalisation within mainstream social activities, one has to address existing social relations. For disabled people to be ‘included’ requires removing the causes behind the exclusion and that means dealing with the nature of society itself and its significance for those with impairments

Integration, Inclusion or Transformation?

I believe it would be all too easy to disappear down a rabbit hole and give up owing to the huge task confronting us. Neither A4I nor I have all the answers and neither are we at this moment in time in a position to greatly influence developments in the short-term among policy makers or disabled and nondisabled communities. What I see is a small group that is willing to investigate, learn, enter into dialogue, and challenge the existing ideas in a positive sense of the word. To discover the way forward, A4I must discuss the meanings of the terms: integration, inclusion, and transformation, with its members and allies, before seeking to develop a shared ‘understanding’ that can be employed in their arguments and material.

To discuss terms such as integration, inclusion and transformation in isolation or without a given context, as the recent A4I members’ meeting illustrated, would be problematic. There is a strong argument which says that each of the three concepts can or have been applied in ways which seek piecemeal social change. Whilst this is true, I believe both inclusion and transformation can interconnect in ways which are capable of producing transformative system change. What radical activists need to do is provide context and signpost to the debates that have taken place in the past so that we may draw lessons from them and from this exercise produce an understanding of how these concepts can aid the struggle. I hope my series of blogs can be part of the process of beginning a dialogue which seeks to clarify the meanings we would like to see attached to concepts associated with the emancipation struggle of disabled people.

Integration or inclusion?

In the two blogs I have written so far on ‘what do disabled people really want’, I have argued that within mainstream discourses there appears to be two distinct meanings that have been given to the concept of ‘social integration’ in the context of disabled people’s position within society. As I pointed out in the first blog, the debate between integration versus inclusion began in relation to global education systems and gained impetus after the World Conference on Special Needs Education in Salamanca in 1994. Lise Vislie explains that:

“….  with the adoption of the Salamanca Statement and Framework for Action on Special Needs Education, represents the event that definitely set the policy agenda for inclusive education on a global basis (Unesco, 1994). According to the Unesco documents, inclusive education

— challenges all exclusionary policies and practices in education;

— is based on a growing international consensus of the right of all children to a common education in their locality regardless of their background, attainment or disability;

— aims at providing good-quality education for learners and a community-based education for all.

The Salamanca Statement, adopted by representatives of 92 governments and 25 international organizations in June 1994, has since generally been regarded as a powerful instrument for innovations in the field.” (24)

Within the A4I meeting and my blog series, I have discussed the debate between integration versus inclusion beyond the framework of education. The usual meaning given to integration is the situation where there is a process of placing disabled people into mainstream settings provided that they are able to adapt to the standardised requirements of the settings with minimal accommodation. This, of course, is very different from how Davis and Finkelstein articulated what the term meant to them. In their understanding it was not about disabled people fitting into the status quo, but rather, the coming together of disabled and non-disabled people to create ‘equal opportunities for all’. Before voicing an opinion on this, I want to allow Finkelstein space to articulate his perspective. He wrote:

“On the ground, in the community, the fragmenting health and welfare services have opened a slot where disabled people have managed to start their own services guided by the social model of disability and, although perhaps often not recognised as such, where they are developing and implementing interventions based on the principle of ‘support’. These are often referred to under the heading ‘independent living’, and the facilities as ‘Centres for Independent Living’ (CILs). This can be rather confusing because the term ‘independence’ is well-established in the language of ‘care’ and perhaps reflects the extent to which the culture of care has been absorbed into the consciousness of prevailing service users. The term ‘integration’ is also used to highlight disabled people’s aspiration to integrate into mainstream society with the

concomitant goal of integrating their own service ideas with enabling community based services. CILs, in this case, refers to ‘Centres for Integrated Living’.” (25)

Here we see once again the difference of opinion over language and meaning, but I want to particularly draw your attention to this sentence:

“The term ‘integration’ is also used to highlight disabled people’s aspiration to integrate into mainstream society with the concomitant

goal of integrating their own service ideas with enabling community based services.” In my opinion this echoes UPIAS’ original ‘challenge’ to society. By talking about ‘disabled people’s aspiration to integrate’, what he is affectedly doing is putting forward a transitional demand. He wrote this in 1999, but it foretold what was waiting in the wings because he went on to say:

“These developments are still at a very early stage and under

considerable threat from economic constraints and a still

strident advocacy of community care by non-disabled service

providers. In essence, while community care remains an

esoteric service independent of mainstream provision,

organisations of disabled people have invested considerable

and growing attention on mainstreaming their needs alongside

society’s diverse population groups and many faceted cultures.

An important constituent of this development has been the

creation of a disability culture challenging the hegemony of the

caring culture. In my view the unfolding social model of

disability not only needs to rediscover the importance of the

long suppressed ‘support’ component of assistance located in

the community but champion its rightful place, at the very least,

as an equal contributor to the formation and transformation of

the next generation of service interventions.” (26)

I would argue that this process he visualised never materialised because of the stranglehold of Neoliberalism, the coming of the age of austerity, and the ideological collapse of the disabled people’s movement. The aspiration may still be there, but it has been severely blunted. What has unfolded over the last thirty years is also a major barrier for advancing any radical agenda; but I believe the tentative ideas found within the work of Davis, Finkelstein, and others, can still inform the praxis of disabled people and their allies in today’s struggle.

Just as Ken and Vic viewed ‘independent living’ as problematic due to mainstream meanings attached to it, and subsequent implications in terms of developing the type of services and society we want, I see similar issues with ‘integration’ and ‘integrated services’. My concerns could be dismissed as being semantic wordplay or using language in a faddish manner, but I would counter argue by suggesting that my concerns are material and based upon an understanding of the hegemonic power that lies in dominant ideological meanings attached to the concept of integration.

The emancipation struggle of disabled people by its very nature challenges the hegemonic power of both dominant ideas and practice. To have access to mainstream social activities has always been the core desire and goal of the disabled people’s movement; the issue as I have always indicated is how can this be achieved? Mike Oliver and I discussed the problematical issues around integration, inclusion and ‘equal opportunities for all’ in the late 1980s. This contributed to Mike writing the following in 1996:

“Conclusion: towards a new understanding; inclusion instead of integration

The rediscovery of citizenship in the late twentieth century has not, however, resulted in a greater understanding of the processes which exclude some groups from the mainstream of social life, nor has it added substantially to their legal rights to be included. This lack of understanding extends, as I argued previously, to what integration means. The follow quote demonstrates the point:

  If by integration you understand a breakthrough into able bodied

  society by disabled people, an assimilation and acceptance of                                                                                                        

  disabled people into already established set of norms and code

  of behaviour set up by the able bodied, then YES I am against it.

  … If on the other hand by integration you mean there shall be

  participation by all members of society, catering for the full

  expression of the self in a freely changing society as determined

  by people, then I am with you.

I have deliberately not referenced this quote because it did not come from a disabled person; in fact, my attention was originally drawn to the quote by Bob Fin[d]lay many years ago, and I adapted it ….” (27)

The original quote was from Steve Biko, and Mike swapped ‘disabled’ for ‘black’ and ‘able bodied’ for ‘white’. (28) The crucial point here is that ‘integration’ often does simply mean an assimilation into and acceptance into already established set of norms and code of behaviour, which is unacceptable, oppressive and often unworkable. We also agreed that ‘equal opportunities for all’ is idealistic within the current nature of capitalist society. There is, of course, a second meaning given to integration within the quote. Steve Biko defines this as ‘there shall be

participation by all members of society, catering for the full expression of the self in a freely changing society as determined  by people’. This second view, in our opinion, fits into how Ken and Vic were using the concept. Mike, and I agreed, that we need to forge a new understanding; employing inclusion instead of integration in order to capture the alternative meaning offered by Ken, Vic and Steve.

Making this shift, of course, is not without its own problems and issues.

How is inclusion being articulated?

I have already stated the importance of providing context therefore I see the need to do this in relation to considering the strengths and weaknesses of employing ‘inclusion’ as a concept. It is always difficult to strike a balance between being honest as to what is required to produce meaningful social change and what is achievable at a specific moment in time. There is a danger that we can put the ‘bar’ for social change too high and in the process halt any progress towards our ultimate goal.

Alyx, a Staff Writer for the Afrikan Black Coalition in the USA wrote:

“Without revolution we cannot remove a traditionally oppressive government overnight, not when it took hundreds of years for this same government to establish and sustain its oligarchic systems with the goals of keeping a prototypical ‘elite class’ in place. ‘A system cannot fail those it was never meant to protect’ and it also won’t change for those it was designed to oppress. 

So what is the balance between reform and revolution? I don’t know that there is a balance, I feel as if we need reform first to make room for revolution. While revolution is what we need, it can’t be done under the circumstances of a lack of unity or true consciousness. Then what is the tangible solution and what can the individual person in America do to change the system today, right now? There is no answer. The solution is as complex, if not more than the problem, and maybe this is a cop out – but my suggestions is to recognize that the system is broken, find your lane of change, exercise your vote locally and nationally, and ensure that what you’re doing is working towards making revolution possible.” (29)

What I take from what Alyx is saying is we need to create the conditions – make the room – whereby people can come together and develop a transformative agenda. Act 4 Inclusion, for example, came out of a campaign to address the crisis within Social Care. In the early days it simply saw the agenda as one of reversing the privatisation agenda and increasing resources. It was only through dialogue that we saw disabled people argue that the system was not simply broken, but in fact it was never fit-for-purpose in the first place and therefore trying to mend it was not really providing people with what they needed or wanted. To a certain degree, I see the discussion around the difference between integration and inclusion in a similar light.

In the first blog, I noted that integration within mainstream discourse was usually understood to be ‘a dynamic and principled process of promoting the values, relations and institutions that enable all people to participate in social, economic, cultural and political life on the basis of equality of rights, equity and dignity.’ As we have just seen in Oliver’s use of Biko, this notion of ‘integration’ can have two conflicting approaches and often than not the prominent approach is one of assimilation and acceptance of established set of norms and code of behaviour which ultimately results in disabled people facing unequal and differential treatment.

The alternative approach towards ‘integration’ as advocated by Biko sounds more like a form of ‘inclusivity’. I say a form of inclusivity because I believe inclusive practice can operate within either reformist or transformative agendas. The United Nations as we saw previously, sees inclusion as ‘a process by which efforts are made to ensure equal opportunities for all, regardless of their background, so that they can achieve their full potential in life. It is a multi-dimensional process aimed at creating conditions which enable full and active participation of every member of the society in all aspects of life, including civic, social, economic, and political activities, as well as participation in decision-making processes.’

Key to either reformist or transformative agendas is the idea that inclusion involves ‘creating conditions which enable full and active participation of every member of the society in all aspects of life’, therefore, the focus needs to be on how these conditions are created.

Before considering how disabled people and their allies have begun to develop their application of the notion of inclusive practice, let us reflect upon how inclusive practice is viewed within the mainstream. As indicated above, inclusion is seen as a universal human right. It is argued:

“The aim of inclusion is to embrace all people irrespective of race, gender, disability, medical or other need. It is about giving equal access and opportunities and getting rid of discrimination and intolerance (removal of barriers). It affects all aspects of public life.” (30)

This aim could, because of its breath, fit within the ICF framework, the

existing eco-social model of disability, and a myriad of current social models as well. It is largely reformist in nature as it counterposes ‘giving equal access and opportunities with getting rid of discrimination and intolerance; however, it still implies the current structures and systems can be made ‘nicer and fairer’. No activist should be opposed to seeking to improve services, living or working conditions; however, reforms and improvements alone will not change disabled people’s overall social situation. Social change more often than not is a means to an end rather than an end in itself. One way inclusive practice is seen as being operationalised is through the development of inclusive design. It is in this area where I believe disabled people and their allies can have in the short to medium term challenging impact upon the status quo. Campaigning for a radical inclusivity programme employing an eco-social approach lays the basis for a new system that can create community based services. It is argued that:

“Inclusive design is about making places that everyone can use. The way places are designed affects our ability to move, see, hear and communicate effectively.

Inclusive design aims to remove the barriers that create undue effort and separation. It enables everyone to participate equally, confidently and independently in everyday activities.” (31)

In the above context, inclusive design, is about buildings and environments. I believe the principles of inclusive design can be extended to include systems and structures. The development of an eco-social approach is about addressing the interconnectedness, both in a positive and negative ways, of systems and structures. My reading of both Ken’s and Vic’s work is that their understanding of ‘integrated living’ corresponds to my notion of inclusive living and the development of power-sharing through coproduction. I have deliberately not included a critique of ‘coproduction’ in this series of blogs because it is a method of working rather than a goal, however, I acknowledge coproduction is a political area of debate. It is a contested concept and we have witnessed forms of coproduction employed within Neoliberal social policy and practice however, this alone should not deter us from having a dialogue around developing progressive versions of coproduction. (32)

Ken’s critique of existing modes of ‘independent living’ needs to be part of the dialogue as well, The elephant in the room is how capitalism links power, choice and control with both individualism and the idea of self-reliance. Extending choice and control to the users of publicly funded services was a cornerstone in the personalisation agenda. It was assumed that giving service users greater choice and control will promote users’ independence. Disabled people and their allies are often divided on how successful this assumption has proved to be. These are massive social and political issues which split the disabled people’s movement during the 1990s and they remain problematic today.

There is more than one reason why this situation occurred, however, in the context of the blogs I have written, I would argue as a result of following the narrow ‘rights agenda’ and consequently the drift towards accommodational politics, the disabled people’s movement failed to politically address the introduction of the Care in the Community policy introduced in 1990. Once again, I believe Vic explains why inclusive living ought to be pitched as the way forward:

“‘Care in the community’, as a policy philosophy, is firmly rooted in able-bodied assumptions about disability. A person with an impairment may need care, and disabled people, too, can have impairments of body and mind. But what disabled people need, just like their able-bodied peers, is

community based support systems . For able-bodied people this takes the form of public utilities – like the electricity supply service, postal service, etc., and of course, public transport. These utilities have emerged in the course of a long history involving the struggle of human beings to control and mould the world according to their lifestyles, culture, etc. Disabled people, until very recently, have had no say, interpretation or impact on what this world might be when constructed from the perspective of our lives and culture.” (33)

The above quotation needs to be understood in terms of how community care reforms worked against the interests of disabled and older people.

The community care reforms outlined in the 1990 Act came into effect in April 1993. Hadley and Clough (1996) claim the reforms ‘have created care in chaos’, and that the reforms have been inefficient, unresponsive, and have offered no choice or equity. Means and Smith (1998) also claim that the reforms:

• introduced a system that is no better than the previous more bureaucratic systems of resource allocation
• were an excellent idea, but received little understanding or commitment from social services as the lead agency in community care
• the enthusiasm of local authorities was undermined by vested professional interests, or the service legacy of the last forty years
• health services and social services workers have not worked well together and there have been few ‘multidisciplinary’ assessments carried out
• in reality little collaboration took place except at senior management level
• the reforms have been undermined by chronic underfunding by central government
• the voluntary sector was the main beneficiary of this attempt to develop a “mixed economy of care” (34)

Very little has changed since the 1990s and the central focus has always been on personal support. As previously stated, disabled people have differing opinions on the ways Direct Payments operate. In my opinion, they fail to break with an individualistic approach which does not address the oppressive system as a whole.

I believe adopting a radical approach towards inclusive practice would enable us to challenge the existing practice and thinking surrounding service delivery within the Social Care system. Currently, there are a thousand and one takes on what needs doing to change or improve the system however the majority centre upon the delivery of personal care.

A glance at how the Trade Union Congress sees what needs undertaking compared to Reclaiming Our Futures Alliance’s outline for a National Independent Living Service (NILS), sees both similarities and huge difference. (35)

In 2019 the TUC published an article by Kam Gill which argued solutions to the social care crisis require a rethink in three key areas:

1. Rethinking Commissioning
2. Rethinking industrial strategy
3. Rethinking funding

At no time does Gill question the nature of the system or consider the needs and interests of those who require social support. Gill treats older and disabled people as simply passive recipients of ‘caring services’. Hence the TUC and Labour are calling for a National Care Service. (36) Mark Harrison and Peter Beresford’s SOCIAL CARE IS BROKEN BEYOND REPAIR – SO WHAT SHOULD REPLACE IT, makes the case for a National Independent Living Service. They write:

“So we are proposing to co-create a new universal right to independent living, enshrined in law and delivered through a new national independent living service managed by central government, led by disabled people, but delivered locally.

This local service will be shaped and delivered by user-led disabled people’s organisations, co-operatives and social enterprises. It will be for need not profit and will not be means tested. It will be independent of, but sit alongside, the NHS and will be funded from direct taxation. There is a much bigger job to do in helping the NHS move to adopting a social model of disability, distress and ageing. It will also demand an end to current discriminatory and cruel approaches to ‘welfare reform’ and instead advocate a new independent living based approach.

It will be about independent living in the broadest sense, not just social care and health. It will therefore need to be located in a cross-government body which can oversee implementation plans, whether it be in transport, education, housing, or social security.” (37)

Aspects of this proposal share common ground with A4I’s but there are major differences as well. I would argue Harrison and Beresford offer a muddled vision which refers to a social approach towards disability, but at the same time undermines the radical social model. They wrote:

“The social care element will need to have its own identity in a national independent living service. This will build on and learn the lessons from the Independent Living Fund, closed by the Coalition government in 2015. It will also learn from the experiences of user-led disabled people’s organisations (DPOs), user-led social enterprises and co-ops which have innovated and developed exciting models of self-organised and self-directed care through personal budgets and peer support. It will work with non-disabled allies who share the critique of the existing system and who work to the social models of disability and distress.” (38)

In my opinion this is repeating some of the mistakes Finkelstein criticised. I am in favour of a radical National Independent Living Service, but with the clear understanding that:

“Elevating ‘independent living’ into a principal (rather than seeing it as an element within a model) in my view avoids in-depth debates about campaigning aims – for example: should we aim at the right (civil rights law) to be independent (independent living services) or should it be for the nationalisation of appropriate social services under our control (integrated living services)?

It, surely, is only by emphasising that ‘rights’ and ‘independent

living’ are no more than ‘components’ of the social model of

disability that makes clarity in the dynamics of our quest

possible.” (39)

I totally agree with Vic, and I will keep pushing for the type of debates he saw as necessary. There is an urgent need to consider how the developing of inclusive practice, that is addressing how to facilitate people’s engagement in mainstream social activities, would feed into creating a new eco-social system capable of delivering community based services, sits in relation to the proposal for ‘integrated living services’. What are the differences and similarities?

Understanding the transformative nature of the eco-social approach

By arguing for an eco-social approach to system change, we are not abandoning the foundations of the emancipation struggle of disabled people but instead, it is building upon them. Social ecology has to be viewed as an additional component of the radical interpretation of disability.  An eco-social approach to system change would employ inclusive practice through adopting coproduction within design, planning and implementation of service delivery. Sharing the power at national and local levels of society would be a progressive way to exercise choice and control. Our ability to construct an inclusive society turns on how to feasible it will be to transform social relations. To end disabled people’s social oppression requires us to address their ‘unequal and differential treatment’ and this cannot be done in isolation. Perhaps at a pollical rather than at a social level, there is a difference between what disabled people really want and what they actually need. This said, I believe the debate over what disabled people really want, can only be concluded when the majority of society acknowledges:

“The allying of service development with community-based aspirations requires substantially different worker attitudes and guidelines for providing professional assistance. Setting up CIL services transforms the way disabled people think about themselves and the public identity they wish to cultivate. In my view this is the beginning of a journey in which a whole new cultural matrix of human relationships is waiting to

be discovered.” (40)

The last twenty five years have seen a reverse in providing ‘what disabled people really want’, therefore these words are as true as when they were first written.

“It is still at the earliest stage of speculation to consider what will be the future of services for disabled people when informed by the social model of disability. This is when the untravelled road from fantasy to reality is at its most confusing and daunting but, nevertheless, challenging, stimulating and exciting.” (41)

I was drawn into disability politics through reading Apart by F. J. Miller and G. V. Gwynne and speaking with Paul Hunt, therefore I will end this blog on a positive note by quoting Paul:

“What seems to me undeniable is that one of the factors in any progress towards a better society is the willingness of people to take theoretical and practical ‘leaps’ which sceptical common sense regards as

unrealistic and idealistic. This is not to say that hard thinking, painstaking research and cautious experiment are not indispensable. The point is that they become sterile without imaginative vision and commitment.” (42)

Notes

1. Davis, K. (1984) NOTES ON THE DEVELOPMENT OF THE     

 DERBYSHIRE CENTRE FOR INTEGRATED LIVING (DCIL) page 1

Click to access DavisK-earlydcil.pdf

• Millington, P.; Wood. H. (2010) Forward: The History of Birmingham Disability Resource Centre, Birmingham: BDRG

•  Davis, K. (1984) page 11

•  Davis, K. (1984) page 1

•  Davis, K. (1984) page 2

•  Williams-Findlay, B. Human Rights Laws and anti-discrimination     legislation: part of the struggle and part of the solution? https://www.inclusionlondon.org.uk/campaigns-and-policy/act-now/human-rights-laws-anti-discrimination-legislation-part-struggle-part-solution/

•   Davis, K. (1984) page 2

• Finkelstein, V. (2007) The ‘Social Model of Disability’ and the Disability Movement, page 10

•   Davis, K. (1984) page 2

1. Davis, K. (1984) page 3

1. Davis, K. (1984) page 3

1. Davis, K. (1984) page 3

1. See the A4I Vision and strategy.                                          

Vision and strategy

1. Within the A4I Vision a ‘holistic approach’ is referred to.

1. Davis, K. (1984) page 2

1. I believe this was evident in the A4I discussion.

1. ROFA’s vision paper has contraposed positions with it.

1. Davis, K. (1984) page 3

1. Finkelstein, V. (1999) Professions Allied to the Community

Finkelstein, V. (1999) A Profession Allied to the Community:  

The disabled peoples Trade Union

Finkelstein, V. (1998) Re-thinking Care in a Society     

Providing Equal Opportunities For All

• Finkelstein, V. (1998) page 26

https://disability-studies.leeds.ac.uk/wp-

         content/uploads/sites/40/library/finkelstein-finkelstein2.pdf

• Finkelstein, V. (1998) page 26

• Davis, K. (1984) page 3

• Davis, K. (1984) page 5

• Vislie , L. (2003) From integration to inclusion: focusing    global trends and changes in the western European societies,

European Journal of Special Needs Education, Vol. 18, No. 1 (2003), pp. 17–35, page 18

• Finkelstein, V. (1998) page 26

• Finkelstein, V. (1998) page 26

• Oliver, M. (1996) UNDERSTANDING DISABILITY: FROM

                   THEORY TO PRATICE, Macmillan Education UK, page 92

• Biko, S. (1978) I Write What I Like, Harmondsworth, Penguin

• Afrikan Black Coalition (2016) Finding the Balance Between                        Reform and Revolution

https://www.afrikanblackcoalition.org/news/finding-the-balance-between-reform-and-revolution

• Martin, L. (Undated) Promoting Social, Economic, and Political Inclusion

https://storymaps.arcgis.com/stories/5b60e6ceefeb4949b7684d3aa3eb77f5

• Inclusion Me network (2008) What does Inclusion mean?

https://www.inclusion.me.uk/news/what_does_inclusion_mean

• https://www.involve.org.uk/resources/methods/co-production

• Finkelstein, V. (1992) Transport implications of care in the community, page 3

Click to access finkelstein-Transport-Inclusive-Living.pdf

• Hadley, R. and Clough, R. (1996) Care in Chaos: Frustration              and Challenge in Community Care, Cassell,

          Means, R; Smith, R (1998). Community Care: Policy and Practice (2 ed.). London: Macmillan Press

• Gill, K. (2019) The social care system is in crisis. Here’s how to fix it

https://www.tuc.org.uk/blogs/social-care-system-crisis-heres-how-fix-it

                   Campaign for a National Independent Living Service (NILS)

NILS

• Towards the National Care Service – LABOUR’S VISION

https://labour.org.uk/wp-

                    content/uploads/2019/09/12703_19-Towards-the-National-

                    Care-Service.pdf

• Harrison, M. and Beresford, P. (2017) SOCIAL CARE IS BROKEN BEYOND REPAIR – SO WHAT SHOULD REPLACE IT

https://labourbriefing.org/blog/2017/11/24/ayugootu1ts3hj752d342uv1wn9778

• Harrison, M. and Beresford, P. (2017)

•  Finkelstein, V. (2007), page 11

• Finkelstein, V. (2007), page 9

•  Finkelstein, V. and Stuart, O. (1996) Developing New Services. Hales, G. (ed) (1996) Beyond Disability: Towards an Enabling Society. Sage.

•  Paul Hunt (1972) Parasite People. Cheshire Smile (Autumn 1972) Vol. 18 (3). A critique of A Life Apart by F. J. Miller and G. V.

Gwynne. Tavistock Publications and Lippincott. 1972.

Introduction

During my time as Chair of the British Council of Disabled People (BCODP), the National Centre of Independent Living broke ranks and joined up with the newly formed Disability Rights United Kingdom (DRUK). I opposed this move as I believed in would be harmful not only for the Disabled People’s Movement, but also for the emancipation struggle of Disabled people as a whole. Nothing has altered my opinion on this. At the time I was of the view that there were Disabled people better placed than I was to develop Independent Living however as the years have progressed, I have come to realise this was a mistaken position to hold.

It is true that I was not directly involved because I did not require personal support and I shared the narrow view that this was the core element of Independent Living, however, my own political development has led to a reappraisal of what should be understood by this term. Like many concepts associated with disability politics, Independent Living is open to interpretation and it is also a fact that it is not always possible to characterise these interpretations from left-right or reformist-revolutionary perspectives. This said, I believe that within the mainstream political arena, Independent Living was being held hostage by perspectives which were open to accommodation by the British State via existing social policy and this situation has helped de-politicalise the concept.

In 2015, I published an article called, ‘Personalisation and self-determination: the same difference’, which considered the central ideas that informed disability politics within the United Kingdom over the last thirty years to see to what extent they had informed the personalisation agenda. (1) I put forward the view that the tensions between dominant ideologies and practices associated with disability and the alternative social oppression approach had not been resolved, but hidden by the process of transforming radical ideas into ones that can be absorbed into the status quo. I still maintain the opinion that the chameleon characteristics of the personalisation agenda have allowed it to appear attractive to the more accommodating sections of the disabled community. Six years on, I believe this willingness to compromise has now spread into the activist agendas because things have become so desperate.

In the first part of this blog I want to ground the debate around the ‘crisis within Social Care’ (sic) as a contribution to a discussion on the question of reform or transform the system of support that older and Disabled people require. The distinction I am making here between ‘reform’ and ‘transform’ is that the former is about changing, but also maintaining, what exists, whereas the latter recognises the need for a complete system change. The second part I will primarily drill down into emerging positions that raise massive issues for Disabled people and their organisations. A key issue for me is the shift right in the thinking around how to address the position of older and Disabled people in society. It is my opinion that the question of Independent Living has fallen off the agenda; not only because aspects of it were replaced by the Neoliberal concept ‘Personalisation, but also because the public narrative on Social Care is solely about ‘looking after the elderly’ (sic). The way Social Care is perceived currently ignores other service users and is a disabling barrier to furthering the struggle for an inclusive society.

Whilst I acknowledge there are issues with speaking of ‘service users’, I have elected to do so here in order to distinguish between people who are currently within the existing system and groups of people who require social support for independent living.

Addressing the ‘Crisis within Social Care’ from a Human Rights perspective

There is broad agreement that there is a crisis within the system called Social Care however there are vast differences of opinion in terms of its causes and what is required to develop strategies to bring the crisis to an end. During the Age of Austerity we have seen massive cuts to Local Authorities’ budgets, the undermining of the NHS and, for example, the dismantling of both children and mental health services. All of these have contributed to the crisis, but this is not the full picture.

There is still a stereotyped perception that ‘Social Care’ is simply about ‘looking after the older people’ which means other groups of people in need of social support are either ignored or subjected to inappropriate services. Another major problem is that there is much confusion and disagreement over what is understood by ‘Social Care’ and as a result, differing interests are being played off against each other. ALL the major political parties have misrepresented the crisis within so-called ‘Social Care’ due to the stereotyping of people in need of support via a crude collapsing together of health and social issues, hiding the impact of the implementation of cuts e.g. focusing on ‘risk management’ within criteria and undermining advocacy and independent living. People seeking services are finding their support needs are no longer considered to be significant enough to merit support or that the services they need no longer exist.

Disabled people, for example, argue Adult Social Care and Independent Living needs to be addressed other than through an outdated ‘one size fits all’ approach that has been adopted by both the National Health Service and local authorities over the last forty years. I want to employ a series of quotations from Ken Davis to connect the past with the present. (2)

“In Britain, the controllers of disability policy, building on the work of generations of their ablebodied predecessors, have defined disability in terms of the ‘medical model’. Such definitions locate the cause of the problems we face in us and our individual impairments. For as long as these people are able to maintain the idea that it is our bodies that are at fault, the social structure they have created can be protected. By the simple device of focussing on our bodies, these definitions draw attention away from their discriminatory society. Such definitions underpin the dominant hegemony of ideas these people have constructed to support their vested interests.”

Ken follows this up by saying:

“It was to some extent the notion of ‘independent living’ that provided the stimulus for thinking about DCIL’s eventual services in a rational rather than a reactive or ad hoc way. Independent living has been described as being about the process of improving the quality of life, by having access to the help necessary for disabled people to identify and pursue their own life choices. The process of comparing local experiences of de-institutionalisation with the independent living philosophy forced a careful analysis of the elements involved.”

This is what I refer to as disability praxis – theory, reflection, action, and reflection around addressing encountered social restriction. Ken put it this way:

“It was out of this kind of analysis that the step-by-step schema, later to be dubbed the ‘seven needs’, emerged. From the point of view of disabled people who were setting out to achieve full social integration from the extremity of social deprivation in segregated residential institutions, these seven elements were encountered in the following logical order:

� information

� counselling

� housing

� technical aids

� personal assistance

� transport

� access

The identification of these areas for practical action at once underpinned the operational framework for DCIL and put flesh on the social model of disability.” (3)

This final sentence, I would argue is crucial for understanding the relationships that exist between the social model of disability, independent living philosophy, our emancipation struggle, and the direction of travel needed to develop a transformative system. Our starting point has to be that those who require social support come from a range of service users with differing support needs – not everyone needs ‘health care’ or even ‘health and social care’ – to conflate them can lead to inappropriate assessment processes and service delivery; denial of any support whatsoever and this can have oppressive consequences. All people require ‘health care’ at different points in their lives and chronic illness or impairment reality may increase the need for health interventions. A considerable number of people within and outside the current system have significant personal support needs which ought to interact with their wider social support requirement. How these three types of interventions interact depends upon individual lifestyles and practices within Health and Social Care regimes. This is called ‘Personalisation’ however it is anything but because ‘the focus on the individual’ is mediated through assessment of ‘needs’ as defined by ‘well-being’ appraisals as set out in the Care Act  2014. Thus:

The duty to carry out a needs assessment applies regardless of the authority’s view of—

(a) the level of the adult’s needs for care and support, or

(b) the level of the adult’s financial resources.

(4)A needs assessment must include an assessment of—

(a) the impact of the adult’s needs for care and support on the matters specified in section 1(2),

(b) the outcomes that the adult wishes to achieve in day-to-day life, and

(c) whether, and if so to what extent, the provision of care and support could contribute to the achievement of those outcomes.

(5) A local authority, in carrying out a needs assessment, must involve—

(a) the adult,

(b) any carer that the adult has, and

(c) any person whom the adult asks the authority to involve or, where the adult lacks capacity to ask the authority to do that, any person who appears to the authority to be interested in the adult’s welfare.

(6) When carrying out a needs assessment, a local authority must also consider—

(a) whether, and if so to what extent, matters other than the provision of care and support could contribute to the achievement of the outcomes that the adult wishes to achieve in day-to-day life, and

(b) whether the adult would benefit from the provision of anything under section 2 or 4 or of anything which might be available in the community.

What exactly are the matters specified in section 1(2)? The Act states:

The general duty of a local authority, in exercising a function under this Part in the case of an individual, is to promote that individual’s well-being.

(2) “Well-being”, in relation to an individual, means that individual’s well-being so far as relating to any of the following—

(a) personal dignity (including treatment of the individual with respect);

(b) physical and mental health and emotional well-being;

(c) protection from abuse and neglect;

(d) control by the individual over day-to-day life (including over care and support, or support, provided to the individual and the way in which it is provided);

(e) participation in work, education, training or recreation;

(f) social and economic well-being;

(g) domestic, family and personal relationships;

(h) suitability of living accommodation;

(i) the individual’s contribution to society.

(3) In exercising a function under this Part in the case of an individual, a local authority must have regard to the following matters in particular—

(a) the importance of beginning with the assumption that the individual is best-placed to judge the individual’s well-being;

(b) the individual’s views, wishes, feelings and beliefs;

(c) the importance of preventing or delaying the development of needs for care and support or needs for support and the importance of reducing needs of either kind that already exist;

(d) the need to ensure that decisions about the individual are made having regard to all the individual’s circumstances (and are not based only on the individual’s age or appearance or any condition of the individual’s or aspect of the individual’s behaviour which might lead others to make unjustified assumptions about the individual’s well-being);

(e) the importance of the individual participating as fully as possible in decisions relating to the exercise of the function concerned and being provided with the information and support necessary to enable the individual to participate;

(f) the importance of achieving a balance between the individual’s well-being and that of any friends or relatives who are involved in caring for the individual;

(g) the need to protect people from abuse and neglect;

(h) the need to ensure that any restriction on the individual’s rights or freedom of action that is involved in the exercise of the function is kept to the minimum necessary for achieving the purpose for which the function is being exercised. (4)

Reading through this, one could not be blamed for thinking that the approach outlined here couched in terms of ‘well-being’ corresponds with the philosophy of Independent Living and Article Nineteen of the United Nation Convention on the Rights of Disabled People, but the manner in which these assessments are conducted fail to respect people’s opinions or lifestyles too many times as we see being argued later. Disabled people reject the view that ‘protecting an individual’s well-being’ is identical to ensuring their human and civil rights.

It is why I believe community based social support through independent living, should replace the old fashioned ‘social care’ model in order to change the relations between health, local authorities, other professionals, service users and communities. I recommend reading Ken’s paper in full.

It is vital, of course, to acknowledge different perspectives among service users;  hence: “…the words ‘care’ and ‘carer’ are regarded by the disabled people’s movement as paternalistic and dependency creating when used with reference to disabled people. Social ‘support’ is currently considered the more appropriate phrase for disability related services. Adult disabled people require …. ‘support workers’ or ‘personal assistants’”

Teppo Kroger writes:

Due to their aversion to care, disability scholars have developed alternative concepts. Tom Shakespeare (2000) talks about help, referring primarily to reciprocal relationships among peer groups where help is provided on a mutual basis. Vic Finkelstein (1998) and several other disability activists use the term support when speaking about the needs of disabled people. Assistance is another concept, used widely in current disability studies, particularly in connection to the work of personal assistants. Nick Watson et al. (2004: 336–7) have commented that these alternative conceptualisations aim to transform care, based on an unequal relationship and including an emotional dimension, into a less personal, contractual relationship. From the employer position relative to a personal assistant, the disabled person is said to acquire power over her/his own life and become ‘protected from the pejorative, symbolic and practical elements of caring relationships. (5)

Promoting a Human Rights perspective

Sandra Daniels and I have been putting forward the ideas found within the Reclaiming Our Futures Alliance’s position paper on “Independent Lives for the Future” in many of the forums we operate within however it should be noted that some of the proposals within the paper are at odds with the views held by others within the campaigns and various political tendencies within wider society. (6) Our own political activism has led us to question how grounded Reclaiming Our Futures Alliance’s position paper is in the final analysis. I will return to this question in my second blog.

We fully stand by the view that there is an urgent need to promote a Human Rights perspective on Independent Living to both disabled and non-disabled people but this is becoming more complex each day. Among the things that complicates the issue is that there is not only the historical relations between how governments, NHS and local authorities on “Social Care” and their inadequate understanding of disabled people’s perspective on Independent Living, but also the fact that many of our allies or potential allies are equally spellbound by the way social support has hitherto been planned and delivered. Reclaiming Our Futures Alliance’s critique of the failings of existing services and the overall framework developed, especially since the 1990s and Community Care is understood by many Disabled activists, but it the wider audiences are still not onboard with it. Like so many other things Community Care began as a radical approach, but soon it became a victim of Neoliberal social policies. While there is such confusion and ignorance around Social Care and Independent Living it is hard to see how the Reclaiming Our Futures Alliance’s critique and proposals for the future will get a fair hearing and my fear is that this will result in them seeking ‘compromises’ in an attempt to get a foot in the door.

What are we up against?

I believe the push for a Human Rights perspective is undermined both by the policies and positions being promoted by various agencies and the lack of awareness among our allies or potential allies. It is clear that people are still confused as to why Disabled activists are distrusting of local authorities and NHS. It is not that we do not take health or what should be covered by “social care” seriously; nor do we claim to have all the answers within the social approaches we promote. What we do understand is the oppressive ideologies and practices that currently exist and are in the pipe-line.

Many disabled activists view the Local Government Association and the Social Care Institute Excellence, along with Think Local Act Personal, as very much part of the problem and anything other than part of the solution at this moment in time. Further, it needs to be recognised that there are both individuals and some organisations who believe it is possible to have their feet in both camps – work with the existing structures and policies while claiming to support radical alternatives. This position creates distrust and it does demand greater transparency from those involved. The Labour Party is a prime example of this, but they are not alone. Many decent people remain confused as to why the agenda of integration of NHS and Social Care structures is so dangerous and oppressive.

The only way to address the ‘Crisis within Social Care’ and promote Independent Living from a Human Rights perspective is to plea for people not to buy into the fake hard sell that emerging. Disabled people and their organisations have a wealth of material, knowledge and experience that can be drawn upon to develop democratic structures, policies and practice which is capable of delivering good quality services to all communities. We are all for ’shifting the centre of gravity’ by placing people at the centre of decision making with the capacity of agenda setting. This is why we favour new national and local structures that would change how the NHS, local authorities, voluntary and service user groups worked together but this cannot be a piecemeal approach. What is required is a transformative system change alongside new national and local structures.

Everything I have written to date attempts to focus upon seeking a way out of the current crisis within Social Care, but this crisis cannot be addressed in isolation; it needs to be understood from within the context of the social oppression of Disabled people. Disabled people’s social oppression revolves around our relations with the rest of society. In simple terms Disabled people want to be included in structures, systems, and practice which are managed by powers that have no desire whatsoever, unless pushed, to accommodate us as this would threaten the status quo. The Disabled People’s Movement has always been confronted by a huge contradiction: we want to end our oppression by entering a society created in ways that reject us at every turn. Historically, two approaches have been used to address this contradiction: seek improvements within the system versus seeking to transform the system into a new one.

In 2001 Vic Finkelstein argued Civil Rights were about individuals or groups of people – it was a legalistic approach. In the ‘rights’ approach, he said, parliament grants legal rights to those it defines as ‘disabled’. The focus is on identifying characteristics of the individual, rather than the nature of society, and then making selected ‘concessions’ to those so defined. (7)

 

How do we make sense of the fact there are people who believe the DDA was a victory for disabled people? This goes against all the evidence that exists. In my opinion the DDA was a political defeat because it would not or could not deliver on our demands. The mid 90s saw the first indication of a fundamental split within our Movement with a tendency emerging focused on accommodating to the service sector and solely engaged with protecting disabled people from ‘discrimination’ and/or making life better. This was at the time when Neoliberalism was about to roll back the progress our Movement had made and disabled people’s organisation were in decline. (8) Again, I believe Finkelstein hit the nail on the head when he said:

The ideological problem facing the ….movement….from the 1990s onwards was whether the social model ….was still relevant in guiding our struggle or whether social changes had advanced so far that the original model no longer reflected the social context in which it had been created? Is the ‘rights’, or ‘potpourri’, model of disability now more in tune with the market economy expanding into the health and social services sector of society? Was the social model….really understood? These are a sobering set of questions which are still relevant today, twenty years on. I have my own take on them however, I am raising them here because I believe they also force us to consider not only Disabled people’s social oppression in terms of Disabled people’s relations with society, but the relations they have with the Capitalist state. In both situations, unequal and differential treatment has historically been employed to create and maintain Disabled people’s exclusion from and marginalisation within mainstream society and the system of Social Care lies at the very heart of this. Given this, how do Disabled people respond? Are they engaged in an emancipation struggle or do they simply want choice and control over the redecoration of their prison cells? (9)

From where I sit currently, most of the ‘solutions’ to the crisis in Social Care fit into various reformist agendas, hardly any are really transformative and that includes those coming from Disabled people’s organisations. In the second part of this discussion, I wish to critique various positions and statements that have emerged over the last few years and months.

 

Part Two

A critique of current positions on resolving the Crisis within Social Care

In this section I want to highlight issues that exist in key position papers. I have only selected those which pose questions for Disabled people and their organisations. Policy papers written on this subject by the Labour Party and trade union Unison are ignored here because both fail to engage with our issues and their content are in my opinion, ageist and disablist. (10) My intention is to employ quotations from position papers and comment on them. The quotations are used to raise issues that I believe merit discussion and resolution, but also to challenge some of the opinions being expressed.

Reclaiming Our Futures Alliance – Independent Living for the Future

‘The language of independent living has been appropriated by Government and public bodies to justify the cuts they are making. Policy documents at national, regional and local government levels repeatedly refer to “helping people to stay independent for as long as possible”, often while simultaneously claiming to be in accordance with Article 19 and yet demonstrating a clear failure to comprehend a concept of independent living based on Disabled people’s right to exercise choice and control over our everyday lives and to access the same chances in life as non-Disabled people on an equal footing. It is common practice for essential support to be removed from Disabled people through social care assessments under the justification of “helping” them to “improve their independence”. Article 19 rights have thus been co-opted and subverted in order to facilitate the retrogression of Disabled people’s rights.’ (11)

There has been recent debate about whether it is useful to still use the language of independent living. We would argue that it is. With certain audiences we are seeking to influence it may be expedient to tailor language in order to be better understood and to convey our messages more effectively, for example referring to cuts to “social care” rather than “independent living support services”.’

There are issues with this in my opinion as it sends out mixed messages and risks undermining the arguments for independent living. Personally, I am weary of speaking in terms of ‘…. to access the same chances in life as non-Disabled people on an equal footing’ as in my opinion it can present an unhelpful idealistic picture of what is being championed – it is dangerous to imply “equality” means “sameness” – Disabled people want to participate in mainstream social activities however that means their lifestyles, incorporating their needs and interests, have to be respected and addressed. The Union for Physically Impairment Against Segregation’s social interpretation of disability is clear on this point. (12)

I also believe there is a problem with the proposal that with ‘certain audiences we are seeking to influence it may be expedient to tailor language in order to be better understood and to convey our messages more effectively’. Again, whilst grasping the logic behind this pragmatic thinking, it has some serious risk factors. Disabled people must be careful not to underestimate the power in the language that maintains and protects the status quo. As I will argue later, if we compromise on presenting our argument in appropriate terms, the outcome could be disastrous. I do not feel comfortable with the notion of being “expedient” because I have passed experience within the Disabled People’s Movement of people being expedient and as a result allowed New Labour to shaft us.

‘Disabled people have long called for the radical overhaul of both the social care and mental health systems in order to better fit a human rights approach to disability.’

Again, I am troubled by the language being employed here; am I being too pedantic when I question what is meant by ‘a radical overhaul’? In my opinion, we ought to be seeking new systems altogether. Social care in particular needs to be replaced not simply “overhauled”.

‘By building on what was most successful about the Independent Living Fund which had considerably lower overheads than local authority administered support, it could also be more cost effective and achieve much better outcomes than the current system.’

What does this actually mean? I am not against incorporating what was ‘most successful about the Independent Living Fund’ into any new service or system, but the Fund was limited in its function and who it supported. I totally dislike the financial ‘justification’ ROFA present here – not only could it be regarded as misleading, but it also has the same whiff as Neoliberal policies connected with Personalisation. (13) I worry about some of the articulations around ‘direct payments’ because they DO accommodate Neoliberal values and this is politically dangerous because some of the arguments around ‘direct payments’ I have heard do risk setting up the vision for Independent Living up to fail. Vic Finkelstein was extremely critical of this area of debate and in many arenas this debate has ALREADY been used against us. (14)

‘The social care element of Disabled people’s right to independent living will be administered through a new national independent living service managed by central government, but delivered locally in co-production with Disabled people.

It will be provided on the basis of need, not profit, and will not be means tested. It will be independent of, but sit alongside, the NHS and will be funded from direct taxation.’

I dislike this formulation utterly: ‘ a social care element’. Not only is it confusing, I believe it once again undermines the fact Independent Living is a holistic approach. As I said previously, personal support tends to be viewed as toileting, washing, dressing, and feeding, but I believe it would be a grave error to articulate this as being the ‘social care element …. administered through a new national independent living service’. Personal support would be integral to what the new service provided, but it surely must be expected to do more than this? I agree with the view that the new service would, ‘be administered through a new national independent living service managed by central government, but delivered locally in co-production with Disabled people’, however, the next quotation I use paints this slightly differently and in doing so, causes concern for me.

‘It will build on and learn from the success of the Independent Living Fund, closed by the coalition government in 2015, and the failures of the local authority care and support system. It will also learn from the experiences of user-led Disabled people’s organisations (DPOs), including those run by people experiencing intersectional discrimination and disadvantages, user-led social enterprises and co-ops which have innovated and developed exciting models of self-organised and self-directed care through personal budgets and peer support. It will work with non-Disabled allies who share the critique of the existing system and who work to the social models of disability and distress.’

This paragraph is too abstract and clumsy; it will need mapping out. My experience suggests there is a high level of ignorance or misunderstanding about the concept “intersectionality”. Not only is there a lack of understanding in terms of its meaning; there is also a need for it to be understood as a methodological tool as well – how to address diversity of experience among disabled people and how differing oppressive ideologies and practices intersect.

The following two quotations are problematic in my opinion. They are messy, both ‘idealist’ and prescriptive in places. What I need to ask after reading this section of ROFA’s vision for the future is: what exact is the nature of this new National Independent Living Support Service? From my perspective and I believe many other Disabled people and our allies, NILSS has to be far more than a ILF mark II.

The vision paper states that at the national level:

‘The national independent living service will be responsible for supporting disabled people through the self-assessment/assessment process, reviews and administering payments to individual Disabled people. Individuals will not be obliged to manage their support payments themselves if they choose not to.’

Then at a local level:

‘Alongside establishment of the national independent living service will be investment in local service provision so that within each area Disabled people will be able to choose from a range of peer support options delivered by user-led Disabled people’s organisations and co-operatives wherever they live. These services will support them to exercise choice and control over the support they receive and to manage their financial, administrative and employment responsibilities including legal duties as employers. Local Disabled people will be meaningfully involved in investment and commissioning decisions, as well as in researching and monitoring how well provision is meeting need. Disabled people who are involved in these processes will also be demographically representative.’

I am fully supportive of having NILSS, but I have real concerns about this proscriptive vision. Just how realistic and desirable is this picture the above quotation paints? Let me be clear: I am not querying the functions that will need undertaking or the need for direct involvement of Disabled people in all areas of planning, development, implementation, and management; what  I am questioning the bold claim that: ‘within each area Disabled people will be able to choose from a range of peer support options delivered by user-led Disabled people’s organisations and co-operatives wherever they live’. As a longstanding Disabled activist, I believe this picture is fraught with problems and requires sober discussions among those who are supportive of the overall vision.

There are many other issues in the position paper that need unpacking and exploring; I will refrain from outlining my take here. A major barrier I do see, and have already indicated, is how does ROFA and other like-minded forces such as Act 4 Inclusion mediate between “the orthodox language of our welfare system” and the language and concepts associated with our Movements? I am specifically thinking about concepts such as needs, assessments, etc. as I see this issue as being problematic. This issue will come into sharp focus when we consider the language employed in the Disability Rights UK’s statement.

 

ACT 4 INCLUSION

A small number of people organised a very successful national Health Campaigns Together Conference in Birmingham in November 2018, which was called Reclaim Social Care and later this was adopted as the name of the organisation. The uniqueness of the group was that it involved activists and campaigners, professionals, academics, trade unionists, and most importantly disabled people.  Lively debates both at meetings and by email exchange eventually led to agreement on a set of objectives which are incorporated into the constitution in the summer of 2019. Reclaim Social Care saw itself as a non-party political, coalition of individuals and organisations campaigning for all social support, independent living and care services to be:

• Free at the point of use
• Fully funded through progressive taxation
• Subject to national standards based on article 19 of the United Nations Convention on the Rights of Disabled People, addressing people’s aspirations and choices and with robust safeguarding procedures.
• Publicly and democratically run, designed and delivered locally and co-productively involving Local Authorities, the NHS and service users, disabled people and carers
• Underpinned by a workforce who have appropriate training, qualifications, career structure, pay and conditions.
• Committed to giving informal carers the rights and support they need. (15)

On the 22^nd of May 2021, Reclaim Social Care held an AGM at which it adopted a new name and strapline: Act 4 Inclusion – choice, control and independence. At the same the campaigning organisation agreed a vision and strategy for the future. What lay behind the idea of a new vision? Their new vision emerged from discussion, research, changing circumstances, development, lived experience, and the recognition of the need to go beyond reclaiming, fixing or integrating the failing current system of Adult Social Care.

The launch of a campaign for a National Care, Support and Independent Living Service (NaCSILS) and their involvement in helping to shape and develop that campaign required them to reassess the role of Reclaim Social Care so the two bodies could sit alongside and complement each other.

They recognised the need to resolve increasing dissatisfaction with their name which many people believe suggests that they wanted to return to some ‘good old days’ that never existed and it was their hope that by clarifying their vision, having a framework for action, and coming up with a new name would better reflects our mission. The organisation had held a series of discussions that had resulted in the recognition that the crisis within Social Care was beyond fixing and therefore what was urgently needed was the development of not only a new national service but a completely new system altogether.

Act 4 Inclusion want to see the development of a new national service framed by a community based eco–social system which needs to work for all disabled people, of all ages, with all types of impairment, and for everyone in society. A community based eco–social system would take an intersectional approach towards policy making, considering the differential impact of universal and targeted policies across the diversity of disabled people (e.g. people with different types of impairment, older people and younger disabled people, disabled women and from other oppressed groups.)

Developing an eco–social system would involve making physical environments, housing, transport, information technologies, etc. more accessible to disabled people whilst at the same time benefiting families, communities, and society as a whole.

Act 4 Inclusion believe Independent Living can be developed through a community based eco–social system ensuring civil and human rights. What do they mean by an eco–social system? Let us consider how these two things are defined. Ecological means: of or relating to the environments of living things or to the relationships between living things and their environments. It can include the need for sustainability. Social, on the other hand, means relating to society or its organisation.

An eco–social system would involve consideration of how people interact with their immediate and distant constructed and natural environments. A community based eco–social system of delivering services would therefore take a holistic approach using coproduction to put individuals and groups at the centre of identifying and addressing barriers to independent living. Act 4 Inclusion seeks to argue that Independent Living is possible through addressing a combination of various environmental and individual factors thus allowing disabled people to have greater control over their own lives. This includes the opportunity to make real choices and decisions regarding where to live, with whom to live and how to live.

What do Act 4 Inclusion see as needing to be done to further their vision?

They want to see a strengthening the resistance to cuts and that all resistance struggles should be based on coproduction with the users of the service under attack at the fore, along with families, friends, front line workers and local communities.

The Covid-19 pandemic has also brought to the fore the need for safeguarding and deinstitutionalisation. Act 4 Inclusion support the relatives and friends campaigning not just for visiting rights to their loved ones in residential care but also to be regarded as valuable partners for care workers. They want the transform the entire sector from market based to community based. Crucial for Act 4 Inclusion is the need to initiate a dialogue on deinstitutionalisation.

Developing the future strategy involves challenging all moves to “integrate” Health and Social Care, campaign against Social Care Charges and promoting what is a radical vision – to build inclusive communities and services through genuine coproduction.

Using a community based eco-social approach for understanding the basic relationships between service users and their environments moves away from traditional need-led assessment procedures towards addressing how to create inclusive participation in both local communities and wider society. Having support to make decisions, exercising choice and control are all aspects of inclusive participation. Effective inclusive participation enables individuals and communities to work together to build capacity in shaping and engaging in decision-making processes through coproduction and the development of confidence, skills, knowledge, and experience.

Act 4 Inclusion asks the bold question: Why would striving towards a community based eco-social system be transformative? They draw their inspiration from the words of Maria Barile, disability activist, feminist, researcher, visionary:

“We cannot achieve social change by using the same structures that exclude people. Rather, it can be achieved by replacing these, with more egalitarian structures.” (16)

I am biased because I have played a major role in shaping Act 4 Inclusion’s new vision. In comparison with other positions being put forward it is without doubt the most radical and ambitious. Promoting community based eco–social system of delivering services is unlike anything being proposed and it is not without risks. Firstly, it may be too advanced given the current socio-political climate, but it is necessary to pursue it because the crisis within the present system is not the only one that impacts upon Disabled people’s lives. The growing ecological disaster has to be factored in as well. Secondly, advocating an eco–social system is also fraught with problems because there are already models which operate within an eco–social approach towards disability but these employ a bio-psycho-social understanding of disability. Act 4 Inclusion acknowledges that these existing models could be adapted, but they want to avoid being connected to the bio-psycho-social understanding of disability. Act 4 Inclusion is an extremely small organisation, so its success or failure will be measured by its ability to draw others such as ROFA and NaCSILS towards them.

National Care. Support, Independent Living Service

The original ‘project’ initiated by a number of Keep Our NHS Public (KNOP) and the Socialist Health Association (SHA) members who wanted a knee-jerk reaction to the terrible events that were unfolding during the early stages of the Covid-19 pandemic. It was thought that existing campaigns were acting too slow. They sought to set up a loose network to campaign for demands which simply mirrored many of those formed by Reclaim Social Care, but also  followed the Labour Party’s ‘solution’ to the crisis within Social Care by calling for a National Care Service. There was no reference to Independent Living nor any intention to engage with Disabled people’s organisations.

Angered by this move that had the support of KONP and SHA, Disabled activists in RSC and ROFA challenged the ‘project’ and demanded negotiations. The result was the adoption of a new set of demands:

1. National Care Support and Independent Living Service (NaCSILS)

The Government shall have responsibility for and duty to provide a National Care and Supported Living Service to provide care, independent and supported living, adopting into English Law Articles from the UN Convention on rights of disabled people that establish choice and control, dignity and respect, at the heart of person-centred planning.

2. Fully funded through government investment and progressive taxation, free at the point of need and fully available to everyone living in this country.
3. Publicly provided and publicly accountable:

The NaCSILS will have overall responsibility for publicly provided residential homes and service providers and, where appropriate, for the supervision of not-for-profit organisations and user-led cooperatives funded through grants allocated by the NaCSILS. A long-term strategy would place an emphasis on de-institutionalisation and community-based independent and supported living. All provision will deliver to NaCSILS national standards. There will be no place for profiteering and the market in social care will be brought to an end.

4. Mandated nationally, locally delivered:

The Government will be responsible for developing within the principles of co-production, a nationally mandated set of services that will be democratically run, designed, and delivered locally. Local partnerships would be led by stakeholders who are delivering, monitoring, referring to or receiving supported services or budgets, e.g. organisations representing disabled people (DPOs), older people, and people who use mental health and other services, in partnership with local authorities and the NHS.

5. Identify and address needs of informal carers, family and friends providing personal support:

The NaCSILS will ensure a comprehensive level of support freeing up family members from personal and/or social support tasks so that the needs of those offering informal support, e.g. family and friends, are acknowledged in ways which value each person’s lifestyles, interests, and contributions.

6. National NaCSILS employee strategy fit for purpose:

The NaCSILS standards for independent and supported living will be underpinned by care and support staff or personal assistants who have appropriate training, qualifications, career structure, pay and conditions to reflect the skills required to provide support services worthy of a decent society.

7. Support the formation of a taskforce on independent and supported living with a meaningful influence, led by those who require independent living support, from all demographic backgrounds and regions. This would also make recommendations to address wider changes in public policy.

Whilst this was a welcomed step forward, Disabled activists involved from RSC and ROFA remained cautious because many of the bodies and individuals associated with NaCSILS had or have positions on finding solutions to the crisis within Social Care which focus on “care services” and KONP/SHA were insistent that “care” was included in the service title. Reclaiming Our Futures Alliance and Reclaim Social Care compromised on this point, but it remains an elephant in the room.

It is questionable whether or not the supporters of NaCSILS understand the deep rooted feelings “care” triggers. This has ramifications in terms of trust on two levels: firstly, the vast majority of the solutions to the crisis within Social Care involving calls for a National Care Service only refer to older people and then only as passive receivers of “care”! All too often those on the receiving end of Social Care are totally absent from the narratives – as things stand, people say they support the seven demands, but flatly refuse to discuss the ‘differences’ that may exist. Secondly, if there are fifty seven interpretations of what a National Care and Supported Living Service might be, where does the power lie in this situation? The Disabled People’s Movement historically has numerous scars from being screwed over by the charities and do-gooding people.

The refusal to discuss how the demands are understood by participants also has implications for the manner in which NaCSILS campaigns. Apart from stating what the seven demands are, what more can be said? In a steering group meeting they could not even agree a stance over the integration of health and social care. Do those associated with NaCSILS even know what the UN Convention on the Rights of Disabled People says or are even bothered? There are also different positions on the fourth demand with some appearing to advocate a return to Community Care delivered by local authorities.

So when NaCSILS is asked, what makes care, support, and IL different from each other or are they one and the same; what will the answer be? When NaCSILS is asked about independent living, inclusivity, coproduction, the relationships between the seven demands; again, what will the answers be? A consistent theme within this blog has been the need to address  how “Nothing About Us, Without Us” acts as a principled position within campaigning around the seven demands or working alongside other campaigns? Do we ignore the stereotyping or absence of service users voices in order to achieve ‘unity of purpose’? Does NaCSILS have a set of agreed principles or just a lumpy carpet where difficult issues are swept under? Recently a dialogue was opened up inside NaCSILS in order to address these questions.

SOCIAL CARE FUTURE

I want to turn my attention to a letter sent by those who claim to be ‘leaders of organisations that represent adult social care nationally’. This body is known as Social Care Future. (17) As with the ROFA’s position paper, I will limit my comments to selected paragraphs of the letter.

Unlike Act 4 Inclusion, Social Care Future does not find the notion of ‘Social Care’ problematic and they are willing to speak about ‘providing care to the most vulnerable within society’ (sic). I acknowledge from the beginning that there are sentences that could sit comfortably within other position papers, but elsewhere what is stated makes it clear that we are far from being on the same page.

SOCIAL CARE REFORM

‘We are writing as leaders of organisations that represent adult social care nationally to urge the Government to act now on reform of England’s social care system and publish its proposals before the Summer Recess. In common with all people who draw on care and support, and colleagues working across social care, we are clear that the time to deliver reform is now.  Reform must be underpinned by a positive vision: “We all want to live in the place we call home with the people and things that we love, in communities where we look out for one another, doing the things that matter to us”, as Social Care Future put it.’

Firstly, there is always a debate to be had about what the nature of ‘reform’ looks like. Usually it is mainly concerned with changing things within the existing system. In my opinion, the government has already indicated its direction of travel with the publishing of the Health White Paper which talks about the Integrated Care Services. Social Care Future, again unlike Act 4 Inclusion and NaCSILS, seem to support an integrated system which calls into question to next two paragraphs of their letter.

‘Transforming social care so that it is sustainable and helps enable people with care and support needs to be fully included in their communities matters in its own right. More broadly, as we look to recover from the pandemic, we need to see social care as a key part of the solution and a key part of our infrastructure.

The vision we share cannot be achieved by social care or even wider public services alone. Public resources need to be targeted to support and supplement the efforts and activities of citizens, community groups, voluntary organisations and local businesses, building on the best of what we’ve seen in our local communities over the last fifteen months. The social care sector, working alongside other council services and the NHS, can shift its practices to enable a much-increased level of preventative activity, freeing up resources for personalised support to local people requiring long term care.’

Their vision doesn’t break with the idea of a mixed market facing approach towards services. It is important to note exactly where their focus of attention lies – ‘to enable a much-increased level of preventative activity, freeing up resources for personalised support to local people requiring long term care’. This is such narrow a focus.

‘Policy on social care, including funding reform, should be guided by and tested against this vision – with a single shared ambition across health and social care which puts people’s expectations for their lives at the centre. This can be measured using TLAP’s Making It Real framework. (18)

This is not the time or place for me to discuss Think Local Act Personal and their Making It Real Framework. It is a discussion that needs to be had because it does have implications for how we understand and address what ‘choice and control’ means, the perceived relationship between personalisation and independent living, and coproduction. I personally find the methodology of TLAP contradictory and not an adequate basis to shape policy or practice on, however, neither am I willing to throw the baby out with the bathwater – expectations I believe need to be placed in context.

‘Addressing longer term funding and co-producing a ten-year plan for social care will help enable successful implementation of the forthcoming Health and Social Care Bill and the revision of the Mental Health Act.  We recognise that helping people to avoid catastrophic care costs and selling their home to pay for care are important dimensions of the reform debate. But action on these issues alone will not suffice.’

I find the above paragraph extremely disturbing for many reasons. It isn’t just weak, there’s a whiff of accommodation and it reminds me of the Disability Big Six Charities who offered to jump into bed with the Tories around the Disability Discrimination Bill. The real crunch however lies with their three priority areas for action – everyone, I would contend, feathers their own nest.

‘We have collectively agreed that the priority areas for action are therefore as follows:

1. Funding for short-term stabilisation

As a first step, the government must urgently address short-term funding challenges, which have been worsened by Covid, to prevent further deterioration in the access to and quality of care. An immediate injection of funding is needed to enable short term stability and avoid serious risks to support during the next phase of the pandemic and beyond. Work by our organisations and others has identified the most serious challenges to support which will require funding.

“This may look reasonable, but it doesn’t really square with the realities that have deteriorated at a faster rate due to Covid and government policies. The injection of funding, I would argue, would in no way create short term stability – the patient is critical.”

2. Urgently bringing forward investment and reform proposals needed to ensure the sustainable long-term future of social care

The government should bring forward proposals for longer-term investment and reform as an immediate priority to create a simpler, fairer system. However, any additional funding that is made available to social care, should not simply be used for ‘more of the same’ and the pre-COVID-19 status quo. It should be targeted on action to shift towards the above vision, such as more home, housing and community focused, asset-based, inclusive and preventative models of care.

“When they speak of funding being ‘targeted on action to shift towards the above vision, such as more home, housing and community focused, asset-based, inclusive and preventative models of care’, we should be demanding to know exactly what this means in relation to the government’s pending proposals. As a statement, Act 4 Inclusion, wouldn’t disagree but of course the devil is in the detail.”

3. Investment in the short term to speed the shift towards a system of social care that is both sustainable and fit for the modern age.

This includes:

A targeted fund enabling councils and their partners to make a rapid shift towards prevention.

A new deal for the care workforce, including personal assistants and other non-traditional workforce roles.

Funding support for action on inequalities and levelling up.

An innovation fund to enable local authorities to harness the true potential of technology.

Transformation and improvement support to councils and providers and to ensure a new funded transformation and improvement framework for adult social care.

Each of these actions is essential for creating the conditions in which social care can be a full and equal partner with the NHS and enable more people to remain independent, living in their own home or in their community.’

This third priority area really lays bare the nature of the growing consensus that’s emerging – they can employ the word ‘transformation’ as many times as they like, but any close scrutiny of these priorities will show that this is not an actual transformative agenda but a re-run of ground covered during the mid-1990s when New Labour set out its stall for Adult Social Care – Personalisation: the great Con.

‘We would welcome the opportunity to discuss our concerns with you and stand ready to work with the Government to ensure that our future social care system is best able to support people to live their best lives.’

Sorry, but I do not trust Social Care Future to further the long-term interests of Disabled People because I believe just like the Disability Charities, they would stab us both front and back.

DISABILITY RIGHTS UNITED KINGDOM (DRUK)

The statement issued by Disability Rights United Kingdom on the 21^st of June 2021 is probably the most disturbing of the positions and statements I have so far referred to from a disability politics perspective. (19) The reason I say this is because within the statement there are views and sentiments expressed that I fully endorse, but it is also true to say that there are also views and sentiments expressed within it I have serious issues with. To make matters worse, the statement is signed by organisations I am a member of or have worked for; I understand why this statement  has been written and signed, but I believe it is a strategic mistake.

Disabled people’s organisations have not a great track record when it comes to acting in a strategic manner. This was an issue just post the passing of the DDA and setting up the Task Force by New Labour. I felt DPAC often lacked a strategic plan and had an over reliance on spontaneity.

I am growing deeply troubled by a number of political blocs that are being formed around demands or pleas to the government around ”social care” reforms (sic). Many of the statements that are appearing are ’compromised’ positions using language from both Disabled people’s organisations and mainstream social policies. Some of the signatures are from forces who are not in support of the various views held by Disabled people and, in my opinion, this should raise alarm bells as we have been here before.

The United Kingdom Disability Right’s statement refers to Social Care reform and I fully acknowledge that this is the mainstream agenda, but as Disabled people we need to be open about what we want, not trying to sneak it in under the carpet. UKDR’s statement makes no mention of Independent Living and it glosses over how Personalisation has distorted key concepts from our Movements.

Why were only certain Disabled people and organisations made aware of this statement and others kept in the dark prior it becoming a done deal? (20)

I do not want Disabled people to be ignored or excluded from developing a way forward obviously, but our power of influence is limited and needs to be used both wisely and strategically. Getting a seat at the table is one thing, sitting at the table in a straight-jacket and being compromised by stronger voices is another. If one lies down with dirty dogs then picking up fleas is a real possibility.

As previously, I will break the statement down into quotations, then offer a critique of the content and where appropriate, context.

DISABILITY RIGHTS UNITED KINGDOM – Social Care Reform; improving Disabled people’s lives

‘The biggest goal of any social care reform should be to improve the lives of people who draw on it. We are a coalition of organisations led by Disabled people and supported by allies. We are the direct voices of Disabled people who draw on social care support to lead our lives. We want Disabled people to be central to shaping Government reforms to social care.’

Call me cynical, but why would the Government at this eleventh hour suddenly change its approach? The relationship between governments and Disabled people’s organisations has radically changed since the 1990s and since New Labour’s engineering of the unprincipled ‘Disability Movement’ – an unholy alliance of disability charities and neoliberal market facing Disabled people’s organisations – which assist in the marginalisation and exclusion of voices from the Disabled People’s Movement, especially those on the Left. It is worth noting that in the last few weeks DRUK has broken its historical links with the ‘Disability Movement’ and I am wondering if I am reading too much into this, however, I could see this statement as acting as a form of rehabilitation and forgiveness for past sins. (21)

Two issues stand out regarding wanting ‘Disabled people to be central to shaping Government reforms to social care’ – firstly, do Disabled people want to give credibility to the idea that it is both possible and desirable to reform social care? Secondly, what are the risks involved in asking for a seat at the table?

The following quotation relate to the issues I have raised.

‘These are the basic rights we want the Government to adhere to in the reform of social care:

Disabled people should have the right to thrive, not just survive.

The role of care and support in today’s society must be to provide care, support and connections that enable people to live the life we choose within their community.

Social care must provide support to people to live, learn, work, participate and connect, on an equal basis with others.

Reform must be fully informed by the experiences, expectations and aspirations of Disabled People who draw on it.’

Who could disagree with these so called ‘basic rights’ (sic); is that not an issue in and of itself? But more fundamentally, are these four ‘desires’ as I would define them, really basic rights if they are so open to vastly different interpretations? Exactly what does ‘fully informed by the experiences, expectations and aspirations of Disabled People who draw on it’ mean in material and practical terms? I am asking about this in relation to legislation and policy development, not simply in terms of service delivery. I am in no way dismissing the experiences, expectations, and aspirations of Disabled People, but I am questioning how these would be collectively articulated. This concern I have links directly with the methodology Mike Oliver saw applying to the Social Model of Disability. He wrote:

‘Using the generic term [Disabled people] does not mean that I do not recognise differences in experience within the group but that in exploring this we should start from the ways oppression differentially impacts on different groups of people rather than with differences in experience among individuals with different impairments.’ (22)

Do the authors and supporters of DRUK’s statement really understand this vital political issue?

Moving on, the statement speaks about principles for reform. I will target my comments around specific issues.

‘1. Any reform should implement the UK’s obligations under the UN Convention on the Rights of Persons with Disabilities to ensure Disabled people’s right to live independently and be included in the community. This means people should have a real choice of where and with whom to live, and have all the necessary support provided to live in the community.

2. Social care must support the choice, control and inclusion of the people who draw on it. Processes must allow the voice of Disabled People to be heard and their choices respected. It must enable people to achieve their potential and have equal life chances to others.’

In the United Kingdom the Disabled People’s Movement’s disability politics are grounded by the social interpretation of disability which established the political identity, Disabled People. This is a crucial aspect of our politics; even the United Nations acknowledged from the outset our right to speak of the UN Convention on the Rights of Disabled People, so why these organisations undermining the framework of British disability politics? I do not regard this to be a small pedantic point; the social interpretation of disability is being undermined at every turn currently and it is vital that British disability politics challenges disablism which is rooted in all government policies. This relates directly to these so called, principles for reform. The UK signed up to the UKCRDP, but what is needed is not the implementation of “the UK’s obligations” which the government has already claimed it is doing, but the development of new legislation which grounds Disabled people’s human and civil rights within all future policy development. The basis of this new legislation has to be Independent Living. (23)

‘3. Social care support should enable people to live an ordinary life. High quality personal care is essential as well as support to get out and about, build connections with others and enjoy open spaces.

4. People should receive and experience social care support based on their needs not on geography, impairment, age, race, ethnicity, gender or income.
5. Relying on social care support must not put people at risk of increased poverty.
6. People, especially those with complex support needs, should have access to good quality support in the community. Reform must accelerate the deinstitutionalisation of care and support provision towards more responsive, flexible, varied and self-directed support within the community.’

I believe “the third principle” is supposed to reflect the UNCRDP and to a degree ROFA’s position but it is extremely poorly articulated and therefore dangerous. Some of the language is highly questionable and panders to dominant thinking. There are sentences here that simply left me bewildered, such as ‘Social care support should enable people to live an ordinary life.’ Is this saying that Disabled people should have the appropriate  support to be able them to develop good quality lifestyles? What is an ‘ordinary life’ and for whom?

There are real problems with how “the fourth principle” is articulated. How is the concept of ‘their needs’ being understood here? If the authors are opposing the postcode lottery of provision, the medicalisation with the assessment processes, the employment of assumptions around impairment, age, race, ethnicity, gender or financial ability; then they ought to have been more upfront.

I am also critical of “the fifth principle” as it lacks real context, ‘Relying on social care support must not put people at risk of increased poverty. It is unhelpful for two reasons: firstly, the language panders to the ‘dependency’ narrative found within Finkelstein’s ‘Administrative model of disability’; and secondly, it does not openly oppose existing mean testing and charging policies. (24) It is weak and risks being divisive. Personally, as a long standing disabled political activist, I find this whole approach embarrassing and detrimental to our struggle.

The statement then goes through a catalogue of things which the authors of the statement see as ‘progressing the reform agenda’. I would take issue with its approach towards “Nothing about us without us” because I believe it distorts Disabled people’s encountered experiences over the last thirty years. The statement says:

‘Making change happen

To make change happen there must be:

Nothing about us without us

Changes that led to radical improvements for those who use social care, such as person-centred planning, personal budgets and direct payments were developed by Disabled people ourselves.  The viability of any reform proposals and their likely success should be judged by those of us who draw on social care.  Disabled People’s Organisations have already developed solutions which should be considered. (22) This is why we urge the government to engage directly with people who use social care and organisations that are led by Disabled people.’

Exactly how radical has ‘person-centred planning, personal budgets and direct payments’ been? Is it not the case, as Jenny Morris and others including myself have argued, these concepts have been transformed to comply with status quo ideas and methodologies since the late 1990s for example via Personalisation? (23)

‘Long term funding

People should receive the care and support we need to lead full lives. Social care must be put on the same footing as the NHS, free at the point of use and funded through general taxation.  There must be a long term plan for social care, as there is for the NHS. Funding must be based on robust evidence of current and future needs and provide a sustainable solution.

Funding reform must ensure that the experience of people who draw on social care continues to improve. In line with expectations laid out by the UNCRPD the Government should take concrete and targeted action to ensure year on year improvements in the achievement of independent living.

Developing good social care infrastructure is an investment, not only in the potential and future of people who need the support, but in good, green jobs and wider economic prosperity. A vibrant, diverse and innovative social care sector could play a vital role in our economic recovery after the Covid-19 pandemic.’

Apart from the first two sentences in this quotation above which I fully agree with, I have considerable reservations about the line of travel that is advocated. As stated, I want a new system altogether and social care as currently constituted, brought to an end. The third paragraph in particular is written in language I am really uncomfortable with as I am totally in favour of removing the market-place.  (24)

‘Reform of the law to give more power to Disabled people and support inclusion

The Care Act has failed Disabled people. It has not prevented severe cuts to support, or the imposition of needless red-tape on those using direct payments. People are denied the power to make decisions about their own needs, support and wellbeing, with councils often making life-changing decisions with very little accountability and with few opportunities for decisions to be challenged.  The law must be strengthened, in line with UNCRPD

• to guarantee Disabled people the right to choose where we live and who we can live with
• to get the care and support we need to lead full lives
• to be supported to live in the community
• to access community activities like everybody else.’ (25)

This is one aspect of the statement where I totally agree with the sentiments expressed. Nonetheless, as with ROFA’s position paper, I believe there is a need to discuss the role of direct payments because the landscape has changed since they were first spoken about. (26)

‘Funding to meet needs and reduce waste

It is critically important to ensure that money is spent on services that Disabled people of all ages want and need – services that move the UK forward towards standards set out in the UNCRPD. Currently, money is often wasted on services that do not support choice, control and inclusion. (27) This must stop. The reform must put maximum available resources into direct support, allowing people to control their support and have real choice and power. There should be reductions in money spent on administration, decision-making and rationing processes.

Understanding current and future needs

When the NHS does not have enough resources to meet the needs it encounters we are able to see this through the existence of waiting lists and then policymakers can respond accordingly. There is no similar measure of shortages in social care. Local authorities should record the needs that they are currently unable to meet to provide similar information. This will make it possible for the Government to work towards filling the gap.’

The framework and resources allocated to Social Care are not fit-for-purpose which is why a complete system change. Talking about measuring the ‘shortages in social care’, and ‘Local authorities should record the needs that they are currently unable to meet’ without placing them in the context of ageist and disablist assessment processes and delivery mechanisms is dishonest and not in the best interests of Disabled people.

‘Abolish charges for social care

Social care should be free at the point of use. It is completely unacceptable that people on means-tested benefits have to pay a significant proportion of their already small income for social care support. The system is particularly unfair towards young Disabled People with high support needs. Reforms must address this problem and stop pushing people into poverty. Charging for social care should end.’ (28)

The system is oppressive and unjust FULL STOP.

‘Enabling Disabled people to innovative

Disabled people often feel as if care is done to us and decisions are made for us. Professionals do not always view themselves as enablers and often regard providing care and support as the end goal. This can lead to high levels of bureaucracy, lack of trust of Disabled people to make ‘good’ decisions, and rigid frameworks with limited options and over the top monitoring systems.

The experience of people who use direct payments is a particularly troubling example of this. Over the past few years, the bureaucratic burden and increasingly rigid requirements imposed by local authorities have left people with additional responsibilities. At the same time, these have removed the freedom and control associated with direct payments.  Innovation is not possible without choice and control and therefore reform must promote a radical change in the approach, ensuring that restrictions are removed so that people are truly able to self-direct their support.’

The first part of my blog touches on many of the points found in this quotation, however, I dislike the presentation of the issues here. I believe it has been written in a style designed to side-step the political and ideological realities, thus ‘blaming’ professionals and local authorities rather than the nature of the system itself and its relations with disablement. Promoting self-determination is something I have done for forty years however I always argued that ‘choice and control’ is dependent on existing power relations – we live in an oppressive society that socially restricts us.

Those Disabled people who are reformist in their politics have replaced the struggle for emancipation with the demand for accommodation. They hide their reformist agenda behind the call for “Rights” and pleas for ‘choice and control’ so they can fit in alongside their nondisabled peers. Independent Living as a philosophy and practice can adopt one of two routes. It can be reformist and seek accommodation into the status quo or it can become a platform for transformative social change. Talking about ‘innovation’ cuts on ice with me.

Conclusion

In this piece I have tried to outline the difficult twists and turns that are unfolding and link them back to the roots of disability politics. It is obvious that the situation is dire and there is no unified movement of Disabled people. I am an old school Disabled activist and I believe the current agendas being cobbled together will once again end up betraying our people. Figures show that this is no small beer we are talking about. (29) Much of the nondisabled Left are ignorant of the core issues and the Disabled Left are extremely marginalised. If the Conservative government does put forward a reform strategy for Social Care, I believe my picture shows a very sorry state of affairs. Only by raising the radical vision for social change will any resistance or transition be even remotely possible.

Notes

(1) Williams-Findlay, B. (2015)  Personalisation and self-determination: the same difference? Critical and Radical Social Work, Policy Press

(2) Davis, K. A SOCIAL BARRIERS MODEL OF DISABILITY: THEORY INTO PRACTICE  The Emergence of the “Seven Needs”

Paper prepared for the Derbyshire Coalition of Disabled People: February, 1990

(3) The seven demands have been expanded into twelve or even fifteen however the framework offered by DCIL in my view has been altered and what are now seen as the ’twelve pillars of Independent Living’ have been watered down. This is material for a separate blog.

(4) The Care Act 2014

https://www.legislation.gov.uk/ukpga/2014/23/contents/enacted

(5) Kröger, T. (2009). Care research and disability studies: Nothing in common? Critical Social Policy – CRIT SOC POLICY. 29. 398-420. 10.1177/0261018309105177.

Kröger’s references

Shakespeare, T. (2000) Help. Venture Press: Birmingham

Finkelstein, V. (1998) ‘Re-thinking Care in a Society Providing Equal Opportunities for All’, Discussion Paper prepared for the World Health Organisation. Milton Keynes: Open University.

Watson, N., McKie, L., Hughes, B., Hopkins, D. and Gregory, S. (2004) ‘(Inter)dependence, Needs and Care: The Potential for Disability and Feminist Theorists to Develop an Emancipatory Model’, Sociology 38(2): 331–50

(6) See footnote 22 and later my critique of ROFA’s position paper.

(7) Finkelstein, V. (2007) The ‘Social Model of Disability’ and the Disability Movement – here Vic is talking about what I call the Disabled People’s Movement

Click to access finkelstein-The-Social-Model-of-Disability-and-the-Disability-Movement.pdf

(8) Resist the Punitive State – Grassroots Struggles Across Welfare, Housing, Education and Prisons, Edited by Emily Luise Hart, Joe Greener, Rich Moth – The Disabled People’s Movement in the Age of Austerity: Rights, Resistance and Reclamation – Bob Williams-Findlay (British Council of Disabled People, UK)

(9) Finkelstein, V. (2007)

(10) People must come before profit in reformed social care system: Social care provision must mirror the structure and ethos of the NHS

https://www.unison.org.uk/news/2021/03/people-must-come-profit-reformed-social-care-system/

(11) Independent Living for the Future – Reclaiming Our Futures Alliance

(12) In Fundamental Principles of Disability (1975) and UPIAS wrote: Thus the Union’s approach to disability …. leads the way to a truly integrative struggle to bring physically impaired people into line with the general, social situation and away from ‘special’ struggles, etc. Whereas the traditional segregationist approach, which treats our problems as a ‘special’ case, has always left us isolated and weak, the struggle for full integration will develop our strengths and bring us into contact with many groups who also have an interest in influencing social change. This is the realistic alternative which the Union proposes to the incomes scheme of the Alliance’s “experts” which still seeks to tie down physically impaired people with tape measures and inflict on us the probing, prying, interfering, dominating control that we have all experienced and struggled against.

(13) Kendall, S. Cameron A. (2013) Personalisation of adult social care: self-directed support and the choice and control agenda – British Journal of Learning Disabilities, Volume 42, Issue 4, Pages: 251-336, December 2014

(14) Finkelstein, V. (2007)

(15) Reclaim Social Care

https://e-voice.org.uk/reclaimsocialcare/

(16) Maria was ahead of her time in her vision of disability rights activism. “We cannot achieve social change by using the same structures that exclude people. Rather, it can be achieved by replacing these, with more egalitarian structures” she said at Action des femmes handicapées Montréal (AFHM)’s 25th anniversary conference in 2011.

(17) ‘#socialcarefuture is a growing movement of people with a shared commitment to bring about major positive change in what is currently called “social care.”  It’s for those who want to take part in imagining, communicating and creating together a future where what we currently call social care makes a major contribution to everyone’s wellbeing and which, as a result, will enjoy high levels of public – and hence political – support.’

https://socialcarefuture.blog/

(18) See:

https://www.thinklocalactpersonal.org.uk/_assets/MakingItReal/TLAP-Making-it-Real-report.pdf

(19) See: https://www.disabilityrightsuk.org/about-us and

https://www.disabilityrightsuk.org/news/2021/june/social-care-reform-improving-disabled-people%E2%80%99s-lives?fbclid=IwAR3pJ6sH5MBOgFHRT1NUtP7I1YmDwkFiCHK-N7d3-46JWMmpzRbLy4Z-0Us

(20) I was alerted to the statement via ROFA’s Newsletter. The reason I am annoyed is that I am one of ROFA’s representatives on NaCSILS and in my opinion it was disrespectful not to provide me with prior knowledge about this. Other central activists were caught unaware of this as well.

(21) See: https://dpac.uk.net/2012/12/a-question-of-intent/

(22)  Oliver, M. (1994) Capitalism and ideology: A materialist critique of the Normalization principle

(23) See for example Independent Living for the Future – a proposal developed by Reclaiming Our Futures Alliance – https://www.inclusionlondon.org.uk/wp-content/uploads/2019/06/NILSS_final.pdf

(24) Morris, J. (2011) Rethinking disability policy

https://www.jrf.org.uk/report/rethinking-disability-policy

Also see:

https://jennymorrisnet.blogspot.com/2016/03/self-determination-and-citizenship-out.html

(25) Effectively this means incorporating article 19 of the UNCRPD into UK law.  The Equality and Human Rights Commission has developed a legal model which we believe should be implemented as part of the reform.  https://www.equalityhumanrights.com/en/publication-download/strengthening-right-independent-living

( 26) Priestley, M. and Jolly, D. (2005) A Postcode Lottery? Explaining the uneven implementation of direct payments in the UK  Centre for Disability Studies

(27) For example evidence of how people with learning disabilities and autism are treated in ATUs: Joint Committee on Human Rights (2019), The detention of children and young people with learning disabilities and/or autism (DRUK)

(28) The picture of how much individuals are asked to pay for their care is different in the UK nations, for example, personal care is free in Scotland.  Local authority charging policies also vary a lot, which leads to a post-code lottery.  For example, Hammersmith and Fulham Council in London does not charge for homecare at all.

(29) Keep Our NHS Public inform us that: Local authority social care services involve a vast remit and £billions of annual funding with more spent on people aged 18-64 than on people over 65. A Health Foundation summary of local authority-funded social care services illustrates this:

In 2018/19 some 842,000 people were receiving long term social care support from their local authority. 548,000, (65%) of these are older adults. 293,000 (35%) are aged 18-64. Of those aged 18-64: 134,000 (46%) have learning disabilities as their primary disability; 94,000 (33%) have physical or sensory impairments; 59,000 (20%) have mental health needs, and 7,000 (2%) have other social support needs.

Only 10% of those with physical or sensory impairments, 18% of those with mental health issues and 19% of those with learning disabilities are supported in nursing or residential care homes, the rest receive their local authority support in the community. In contrast, 61% of older people who are funded by local authorities live in residential or nursing homes. https://www.health.org.uk/sites/default/files/upload/publications/2020/Social%20care%20for%20adults%20aged%2018-64_Analysis.pdf5

 

This is four out of four:

The radical materialist social model and critique of rights and the neoliberal agenda

I have argued the Disabled People’s Movement moved away from the radical materialist social model and the campaign for ‘rights’should be viewed as part of this legacy – the ‘right’ not to be denied access to participation in mainstream social activity. The logic of the individual legal ‘rights’ approach is that by modifying existing societal structures and dismantling barriers to increase equality of opportunity disabled people will be ‘freed’. This is based on the belief that entitlements to formal rights within the existing competitive market society would automatically confer ‘social acceptance’ or lead to an end to social oppression. However, as Russell and Malhotra explain the problem with this mode of thinking:

“Liberal anti-discrimination laws cannot end systemic unemployment and            individual rights cannot override the economic structure. Neither the market nor civil rights laws can end the exclusion of disabled people from the labour force.” (75) 

The individualised market-oriented approach spawned the idealistic notion of a ‘barrier free’ society which has been used to undermine the original social model.  I support the assertion that, consequently, this ‘approach diverts attention from the mode of production and the concrete social relations that produce the disabling barriers, exclusion and inequalities facing disabled persons.’ (76) The emergence of the tensions within the Disabled People’s Movement were to some degree underpinned by the differing theoretical assumptions about the nature of oppression. Moreover people with impairments come from a diverse array of socio-economic and political backgrounds. As a consequence of these differentiated class locations, disability activists may have divergent interpretations of disability and social oppression resulting in conflicting views regarding what campaigns for ‘rights’ could achieve.  Rather than seeing disabled people as automatically having a ‘shared agenda’, these distinct perspectives can be linked to the different social strata from which activists are drawn. The changing nature of capitalism cannot be ignored either.

I fully agree with Grover and Soldatic that:

“….there has arguably been a reassertion of the old Poor Law binary of the ‘deserving’ and ‘undeserving’ and, in turn, a reshaping of disability citizenship regimes with diminishing citizenship entitlements …. [which has been referred to as]…. an authoritarian coercion of a ‘positive citizenship’ that places obligations and responsibilities at the centre ahead of rights, respect and policies of redistribution. As our analysis suggests, while the ‘disabled body’ has changed little, the systems and processes that classify them as being capable/incapable of working has undergone a radical shift to limit the number of people categorised as disabled.” (77)

The restructuring of the welfare state through Neoliberalism has required a modification of seeing disability as a personal ‘tragedy’. Since the introduction of narratives promoting ‘look at the ability not the disability’ and talk of citizenship we have witnessed the reinforced the notion of self-reliance and an increase in the scrounger rhetoric around welfare reform. Owen and Parker Harris capture the ideological and material shift that has taken place:

“Neoliberalism has resulted in the destruction of the prior “divisions of labor, social relations, welfare provisions, technological mixes, ways of life, attachments to the land, habits of the heart, ways of thought, and so on” (Harvey). The impacts of the neoliberalism can be summarized by considering that neoliberalism embodies the recommodification of labor; that is, market participation is required for an individual to meet their needs and be considered a citizen. While governments have adopted this approach to varying degrees, individual needs are now the responsibility of the individual and they receive minimal government assistance. Where government assistance does exist it typically offers a minimal amount of protection and has been linked with the labor market through employment-related conditions. Neoliberal approaches require individuals to participate in the labor market in order to achieve a decent standard of living.” (78)

There is a need to acknowledge the impact this has on both disablement (structural) and disablism (ideological/cultural) and why it is folly to apply any static application of a social approach towards disability. This is why I have set out my blog the way I have as the four cornerstones are in my opinion the foundation of radical disability politics.

Resisting revisionism and rekindling the struggle

Since the mid-1990s the foundations of radical disability politics have been undermined, if not dug up altogether. Neoliberalism encouraged individualism and self-reliance and attacked collectivism. If we return to the question of personal experience of impairment, what we find is this has grown as a subject matter at both academic and political levels of discourse. Why is this? Bill Hughes argued:

“The growing fascination with the body in disability studies can be traced to the mid to late 1990s, when disabled feminists and the sociology of the body met with the social model distinction between impairment and disability and found it wanting. The linguistic, cultural and somatic turns in western thought have made it difficult for the social model of disability to continue to ignore or be indifferent to the body and impairment. The effort to sustain such an agnostic position has fragmented, particularly as the embodied differences among and between disabled people have become manifest in new social and political aspirations. (79)

As I have explained elsewhere, how people such as Hughes read the breaking of the causal link between impairment and disability is problematic. In the majority of instances their critiques of the social approaches towards disability completely distort its purpose and this has fed into collusion with centre-right thought. (80)

Unfortunately, in my opinion, Mike Oliver and Colin Barnes made a fumbling attempt to defend UPIAS’ core argument about the political necessity for making the breaking of the causal link between impairment and disability in The New Politics of Disablement. Between pages twenty-two and twenty-four there are a number of confusing statements which undermine the debate. Firstly, they state:

“Moreover, others argue that impairment and disability are social constructions and subsequently the division upon which the social model is based is fallacious and no longer valid. …. But to suggest that this distinction is anything other than a practical guide to action is false. Whilst such assertions may be of interest to philosophers, and some social theorists, they have little, if any, practical value in terms of research, policy and practice.”  (81)

Sorry, I disagree with this view. Yes, in my opinion the postmodernists have misinterpreted the purpose and nature of breaking of the causal link, but I suggest Oliver and Barnes also misrepresent the argument. The division is not just about providing ‘a practical guide to action’; it is also an ideological challenge to the foundations upon which the dominant social constructions of impairment and disability are based. I say this because the definition of a social construct is that they are “an idea that has been created and accepted by the people in a society.” (82) Antonio Gramsci spoke about ‘hegemony’ as being  the social, cultural, ideological, or economic influence exerted by a dominant group. (83)  The majority of societies therefore ‘accept’ the constructed views of impairment and disability that flow from the individual tragedy model of disability. It becomes our task to overthrow this oppressive way of evaluating and treating bodies and minds that do not conform to the hegemonic perception of impairment/disability as being  abnormality/dysfunction. I fail to understand why Oliver and Barnes did not question which social constructions of impairment and disability postmodernists are articulating for and against? Is it not the case that the definitions of impairment and disability developed by UPIAS are in fact counter-hegemonic social constructions? (84)

I want to develop this further by introducing a further confusing statement from Oliver and Barnes. They wrote:

“The distinction between impairment and disability is a pragmatic one that does not deny that some impairments limit people’s ability to function independently. Nor does it deny that disabled people have illnesses at various points in their lives and that appropriate medical interventions are sometimes necessary. …. Humans are social and no one, regardless of impairment, can function completely independently. (85)

I do not understand why Oliver and Barnes felt the need to introduce two unnecessary qualifications. The distinction between impairment and disability within social approaches in order to distinguish between the realities of impairment faced by either an individual or groups of people with specific impairments and the externally imposed social restrictions created by the social, cultural, ideological, and economic nature of given societies. Let us recall, the World Health Organisation used a triad definition of disability: impairment (the actual condition), disability (the negative impact of impairment on individual’s body/mind), and handicap (the social consequences of the impairment or disability). Each part was seen as being autonomous, but often causality was just assumed and established as ‘common sense’. It was seen that impairment/disability resulted in handicap. This is why the dominant way of viewing impairment and disability/handicap as inseparable is so culturally grounded in the majority of people who buy into the contours around what is or is not “normal” or “abnormal” (sic). (86)

UPIAS’ social interpretation of disability rejected the assumed causal link.

Over time the Disabled People’s Movement argued for a duo definition of disability: impairment (the actual condition which may restrict an individual’s body/mind) and disability (the imposed social restrictions caused by societal responses to impairment). Interestingly, Finkelstein maintained a triad definition for a while, swapping the intention behind disability and handicap around. (87) Maintaining that

impairment and disability/handicap are inseparable is a vital aspect of capitalism’s disciplinary power.

People with impairments have been historically blamed, punished and killed because of their non-conformity. People with impairments are transformed into disabled people by social relations that deny their humanness thus subjecting them to unequal and differential treatment. The breaking of the causal link between individual bodies lacking in degrees of functional capacity and imposed social restrictions has nothing whatsoever with whether or not certain impairments require medical interventions, result in chronic illness or anything else to do with dysfunctionality; it has always been about exposing the unnecessary and judgemental normative values that sustain capitalist interests.

Barile wrote:

“Inequity occurs when the social structures and spaces, social norms, culture and

the tools of social interaction are constructed without taking differences, and therefore, equity, into account. Inequity, or the application of uniform standards, results is a singleton society built on the premise that everyone is the same and

that those who are not must either learn to live within the structure established for the majority or perish. (88)

At no time did UPIAS or Finkelstein question the realities of impairment; what they argued was that society responded to these realities in oppressive ways. Finkelstein, for example, wrote:

“The reason why few individuals would willingly identify themselves as disabled until

recently is not immediately obvious. Perhaps this has to do with the general confusion of disability as a synonym for physical impairment (with negative associations) and as a term for those who suffer discrimination. The universal instinct of disabled people to separate their experience of discrimination (which should be opposed) from the experience of living with a body impairment (which has to be managed) may explain the general reservation about identifying oneself with a term which confuses both states.” (89)       

David Pfeiffer in his abstract to his ‘The ICIDH and the Need for its Revision’, wrote:

“The International Classification of Impairments, Disabilities, and Handicaps (ICIDH) published and used by the World Health Organization is currently undergoing a revision. Its conceptual basis is the medical model which leads to the medicalization of disability. From this point it is a short step to eugenics and a class-based evaluation of people with disabilities using the concept of ‘normal’. People with disabilities are found to be lacking and a burden. The language and the logic of the ICIDH are faulty. It is replete with biased, handicapist language. In its present form and even in its proposed revised form (ICIDH-2) it is a threat to the disability community world wide.” (90)    

Whilst I would employ different language to Pfeiffer, I broadly concur with his argument and warning. It is also why I found the quotation I used from Oliver and Barnes, especially the final sentence confusing and alarming. Stating, ‘Humans are social and no one, regardless of impairment, can function completely independently’ has little value unless placed in context. It is precisely this point that Finkelstein addresses so well, and I do not apologise for quoting at length:

“Independent living is a lie. Human beings are by nature dependent. That is why we live in societies. We are dependent upon assistance in gaining access to plentiful clean water, in-house electricity and gas, diversity in entertainment, a multiplicity of transport, support in maintaining our homes and care when we are ill, etc. In fact, life in modern society is inconceivable without being dependent on others for assistance. Disabled people, of all human beings, should know this and to pretend otherwise is to accede to a humiliating deception propagated by USA cultural imperialism. In my view disabled people will begin making their own unique contribution to the general well-being and knowledge about human nature when we fearlessly challenge the ‘independence lie’ championed by protagonists of the competitive market economy. Disability studies, if it is to become a civilising instrument for challenging the stupidity of bodily perfection at the expense of ‘ahimsa’ cannot blend into the dominant cultural landscape painted by people with capabilities. In this picture we will always stand out mutilated (crippled!), irrelevant and rather pitiful. We need our own set of standards based on our interpretation of the quintessential human paradox – that is, we are ‘able’ precisely because we are ‘socially dependent.” (91)

I have not addressed the movement for independent living in this blog because I question the extent it has shaped disability politics as opposed to being a component in the struggle for disabled people’s emancipation. Ravi Malhotra when outlining the history of the independent living movement hits upon its contradictory nature and reveals the grounding for the concerns expressed by Finkelstein. He wrote:

“The emergence of the independent living movement in the early 1970s in California, and soon thereafter nationally and internationally, marked a dramatic shift in attitudes on personal assistance services specifically and disability rights generally. The independent living movement is based on the idea that people with disabilities ought to have the same civil rights, choices and control over their lives as those without disabilities. It entails allowing disabled people to be empowered so that they may undertake the same risks as others and resist a paternalism that fosters oppression. The politics of the independent living movement are complex and even somewhat contradictory. While its origins are rooted in multiple social movements including largely untheorized campaigns such as the self-help social movements associated with Alcoholics Anonymous and other such support groups as well as conceptualizing disabled people as consumers with rights associated with their status as customers, it is apparent that the African American quest for civil rights that emerged in the 1960s has had a major impact in the development of the independent living movement. It is therefore closely associated with the social model of disablement which posits that it is structural barriers in society, from a lack of wheelchair ramps to a lack of attendant services and stereotypical attitudes, which are the fundamental problems faced by people with disabilities. At the same time, it has a very market-oriented and conservative individualist strain to resolving social issues which has implications for all issues that it seeks to analyze including the politics of attendant care.” (92)

The fact that ‘the politics of the independent living movement are complex and even somewhat contradictory’ make them problematic in relation to radical disability politics. The American version of independent living, what Vic called, “cultural imperialism”, was incorporated into the politics of the centre-right of the British movement and sat comfortably alongside elements of the Neoliberal market economy. (93) Given this, I believe there is an urgent need to battle to exert radical disability politics back onto the agenda and in so doing, attempt to prevent disabled activists from repeating the errors from the past. The reason I asked what might constitute the four cornerstones of British disability politics is that I see the need to revaluate disability praxis past and present. Without an exercise of this nature I cannot see disability politics being advanced in any radical and meaningful way. Without returning to the roots of disability politics where the cornerstones were laid, all we will be left with is revisionism and accommodation to the status quo. A number of basic ideas need to be rediscovered such as Abberley’s views on developing a theory of disability as oppression along the lines I outlined earlier. Thus I view disability politics as:

• understanding disability as a socially created product.

• rejecting seeing disability as ‘an individualised problem’ and acknowledging imposed social restrictions as the basis for people with impairments’ social oppression.

• engaging in the struggle to emancipate disabled people from an economic and social system – capitalism – which creates and maintains a form of social organisation which excludes and marginalises people with impairments thus transforming them into disabled people. Thus consciously engaging in critical evaluation of capitalist society and taking steps to create alternative models of social organisation via new praxis.

• embracing a politically based methodology that recognises the fact  differences exist in the ways in which specific groups of people with impairment experience disability as social oppression but that in exploring this we should start from the ways oppression differentially impacts on different groups of people rather than with differences in experience among individuals with different impairments.

• accepting that addressing both disablement and disablism increasingly requires an incorporation of ecological strategies into the struggle.

• articulating ‘disability rights’ not simply as the legal entitlement to civil and human rights law, but rather as “the collective action of disabled people to assert their right to end their social oppression” – this being an ‘unspoken’ understanding among the Left within the Disabled People’s Movement.

Returning disability politics to this understanding will not be easy in the current crisis torn climate, but certain steps can be taken in this direction. It will require raising the political consciousness of disabled people through establishing a fresh set of short, medium, and long term objectives. One step that is needed is reclaiming the radical social approach towards disability and I see this as being performed in the short-term through a critique of the strengths and weakness of the United Nations Convention on the Rights of Disabled People. This work has begun. (94) A more immediate activity could be the establishment of political demands to assist disabled people’s resistance to what is unfolding.

With this in mind, I was drawn to a blog entitled: Exploring Disability Politics And “Four Freedoms” For People With Disabilities, written by Andrew Pulrang, an American Activist. (95) I do see merit in adopting these four Freedoms as an immediate set of demands to organise around despite their obvious reformist nature. Pulrang wrote: “It may help to think about a version of Roosevelt’s ‘Four Freedoms’ for disabled people. What would they look like?”

I would quibble over his use of language and ‘definitions’ (sic) therefore I have reworded them for a British audience and from a social approach perspective. Thus:

1. Freedom of movement

Architectural accessibility — in our homes, communities, workplaces, businesses, and all public buildings and spaces. Access to well-being services and technologies that enhance our independent mobility, with affordability, choice, and minimal red tape.

The ability to choose where we live, where we go, and what we do — free of excessive or discriminatory restrictions, regardless of their benevolent intent.

2. Freedom from judgment and violence

Basic civility and reserved judgement in our everyday interactions — so we are free from unwanted judgement, belittling, and bullying, from strangers or those close to us.

The adoption of non-judgemental and respectful approaches toward people who have impairments whether or not they are visible or well established, whilst acknowledging the need for greater understanding of the origins and social implications of all forms of impairment.

Basic safety from physical and emotional attack and abuse, by anyone.

3. Freedom from normative evaluations

Creating the space to forge our own culture and social identity as an element of developing emotional support and philosophical frameworks that assists us to accept ourselves as we are, with strong inner confidence and pride.

Participation and representation in media and popular culture, including images of disabled people we can identify with, reinforcing the demand that we what to be full and respected members of society with stories to tell.

Social acceptance of the full range of our life choices and coping mechanisms, so we are not held to a narrow template for how disabled people should behave.

4. Freedom of decision making

Equal, age-appropriate legal status and agency based on the same criteria as non-disabled people, without imposed impairment or socially related restrictions preventing our social inclusion and autonomy.

Material conditions that allow for a wide range of practical choices, so that “choices” are meaningful, not narrowed or restricted solely by a lack of resources, infrastructure, or imagination.

Support, not control, for disabled people who need assistance to be able to make their own choices — ensuring that when needed, we have true partners and allies, not supervisors and disciplinarians. An end to imposed institutionalisation and imprisonment.

I wish to draw this blog to an end by using a final quotation from Vic Finkelstein:

“I believe the radical social model of disability can inspire initiatives to guide our struggle for emancipation in entirely new ways. The responsibility is on us to pursue such initiatives even when fiercely resisted by people with capabilities, or when the insight into the struggle ahead looks very daunting, or when the champions of ‘rights’ in the disability movement lead us astray into pressure group politics that feed futile demonstrations and sterile parliamentary lobbying. In my view we can enter the class struggle in our own right only when our needs and views are legitimately reflected in a section of the working class.” (96)

The final question this blog must ask is: are these things I have outlined worth fighting for?

Footnotes and references

(75) Russell, M., & Malhotra, R. (2002). Capitalism and disability. Socialist Register, 38, 211–228. P.222

(76) Op. cit. p.212

(77) Grover, C. & Soldatic, K. (2013) Neoliberal restructuring, disabled people and social (in)security in Australia and Britain

https://www.sjdr.se/articles/10.1080/15017419.2012.724446/

(78) Owen, R. and Parker Harris, S. (2012) ‘No Rights without Responsibilities’: Disability Rights and Neoliberal Reform under New Labour, Disability Studies Quarterly https://dsq-sds.org/article/view/3283/3110;

HHHhhgHhhHarvey, D. (2006). Neo-liberalism as creative destruction, p.146. Geogr. Ann., 88 B(2), 145-158.

(79) Hughes, B. (2009) Wounded/monstrous/abject: a critique of the disabled body in the sociological imaginary, Disability & Society Vol. 24, No. 4, June 2009, 399–410

See also: Hughes, B. (1999) ‘The Constitution of Impairment: modernity, and the aesthetic of oppression’, Disability & Society, 14 (2), 155 – 172

(80) Mawyer, R. (2005) The postmodern turn in disability studies.

\https://www.thefreelibrary.com/The+postmodern+turn+in+disability+studies.-a0170372819

(81) Oliver, M. and Barnes, C. (2012), p.22

(82) According to Merriam Webster, a social construct is: “An idea that has been created and accepted by the people in a society.”

theculturalcourier.home.blog/2019/03/27/everyday-anthropology-social-constructs/

(83) Gramsci, A. (1971) Selections from the Prison Notebooks, London, Lawrence and Wishart

(84) Goodley, D. (2016) Disability studies: An interdisciplinary introduction, Sage. p.11

(85) Oliver, M. and Barnes, C. (2012), p.23

(86) Wood, P. (1980) International Classification of Impairments, Disabilities and Handicaps, Geneva: World Health Organisation.

World Health Organisation, (2001), International Classification of Functioning, Disability and Health (ICF), Geneva,

http://www.who.int/classifications/icf/en/.

(87) Finkelstein, V. (1975) PHASE 2: DISCOVERING THE PERSON IN ‘DISABILITY’ AND ‘REHABILITATION’, Magic Carpet (New Year 1975) Vol XXVII (1) pages 31-38

(88) Barile, M., (2003), ‘Globalization and ICF Eugenics: Historical coincidence or connection? The More Things Change the More They Stay the Same’, Disability Studies Quarterly, Spring, Vol. 23, No. 2, pp. 208-223, http://www.cds.hawaii.edu/dsq.

(89) Finkelstein, V. (1993) Commonality of Disability, p.2

ttps://disability-studies.leeds.ac.uk/wp-content/uploads/sites/40/library/finkelstein-Commonality-of-Disability.pdf

(90) Pfeiffer, D. (1998) The ICIDH and the Need for its Revision, Disability & Society, Volume 13, Issue 4, pages 503-523

(91) Finkelstein, V. (2004) Phase 3: Conceptualising New Services

http://www.lancaster.ac.uk/…/2004/papers/finkelstein2004.doc

(92) Malhotra, R. (2006) Empowering People with Disabilities, New Politics issue 41

https://archive.newpol.org/issue41/Malhotra41.htm

(93) See: Finkelstein, V. (2007)

(94) See: Meekosha, H., & Soldatic, K. (2011). Human rights and the global South: The case of disability. Third World Quarterly, 32(8), 1383-1397.

Soldatic, K. (2013). The transnational sphere of justice: Disability praxis and the politics of impairment. Disability & Society, 28(6), 744-755.

(95) Pulrang, A.  (2002) Exploring Disability Politics And “Four Freedoms” For People With Disabilities

https://www.forbes.com/sites/andrewpulrang/2020/03/04/exploring-disability-politics-and-four-freedoms-for-people-with-disabilities/?sh=28d2be7619c4

(96) Finkelstein, V. (2001) p.5

Further reading:

Gleeson, B. J. (1997) Disability Studies: a historical materialist view.

Disability and Society, 12 (2), 179-202.

Hevey, D. (1992) The Creatures Time Forgot: Photography and Disability Imagery. London, Routledge.

Peters, S. (2000) ‘Is There a Disability Culture? A Syncretisation of Three Possible World Views’, Disability & Society, 15 (4), 583 – 601

Shakespeare, T. & Watson, N. (2002) The social model of disability: An outmoded ideology? Research in Social Science and Disability, 2, 9-28.

Titchkosky, T. (2003) Disability, Self, and Society, University of Toronto Press,

Thomas, C. (2004) ‘How is disability understood? An examination of sociological approaches’, Disability & Society, 19 (6), 569 – 579

This is part three of four:

Forging a new social identity – a route to empowerment and emancipation?

Central to those who advocate the development of disability culture is the idea of a new social identity. Because disabled people often were ‘forced’ to live and socialize together therefore it is common for disabled people to ‘distance’ themselves from others once free from institutions. (40) Many, however, have spoken about how their politicisation around the ‘rights agenda’ led to them seeing other disabled people in a new light. This dynamic is best captured by Finkelstein and Morrison when they argued:

 “A developing disability culture can not only increase insight into the progress of disabled people becoming active in the area of civil rights, but can provide important opportunities for individuals to gain confidence by forming a new and independent social identity. From this point of view the formation of a distinctive and vibrant disability culture is a vital component in the construction of an accessible route to empowerment. (41)

As I have already indicated, this idea of a new social identity raises a number of questions. It is not uncommon in the USA, for example, to see disability culture incorporated into a minority group perspective. Hahn  states:

“The minority-group perspective analyzes disability as a sociopolitical construction occasioned by the impact on … disabled people of an environment shaped by and for the dominant majority.” (42)

Barnes however is critical of this perspective because it opens up the possibility of disabled people being accommodated within the existing political and cultural framework where they would be viewed as one more special interest group or sub-culture. (43)This approach, I believe did lead to losing the anti-hegemonic nature of disability culture. In a similar fashion disabled people have differing views as to what ‘disability pride’ means and people, both critical and supportive of disability culture and the social model, have suggested some ambiguity remains. Swain and French sought to address some of these issues by advocating an affirmation model of disability, nevertheless their argument remains at the margins of the debate. (44)

Many post-modernists question the wisdom of not only the minority group perspective, but any attempt to construct a ‘disabled’ social identity. Leggett  argued: 

“.…the price of becoming politically active on their own behalf is accepting the consequences of defining disability within new perspectives, which have their own priorities and needs.” (45)

Writers such as Humphrey (1999) speaks of identity as a double-edge sword, whereas Galvin (2003) seeks to divorce the notion of disability culture from ‘identity’ by drawing upon the idea of community resistance as a means of dissolving oppressive identifications. (46) Shakespeare (2006), who has a different agenda to the post-modernists, presents the most damning attack when he writes of the ‘prison of identity politics, which leads to the politics of victimhood and the celebration of failure.’ (47)

When reviewing the post-modernist arguments there appeared to be some useful insights into the limitations and pitfalls of building disability culture on identity politics, however, none of those I have read adequately address the power relationships in terms of struggling against the cultural hegemony of dominant ideologies and culture. Shakespeare, on the other hand, appears to want to rehabilitate the dominant ideologies rather than combat them. Without a meaningful alternative pole of attraction it is difficult not to understand why disabled people have adopted the strategies they have in relation to identity politics and disability culture.

So can disability culture be viewed as an empowering force? Gill expressed the view that ‘we could oppose our social devaluation through developing a strong disability community-family and elaborating a proud disability culture.’ (48) Undertaking such a task would not simply confront non-disabled people, it would also challenge some disabled people as well. Simon Brisenden perhaps puts this in the sharpest of terms when he wrote:

“Some disabled people avoid the issues of disability culture simply because it touches areas of their lives that they would rather not think about. If you have carved out a life against all the odds as an alien in a non-disabled world, you do not want to think too hard about the price you have had to pay.” (49)

He suggests there is a struggle between those who seek acceptance and buy into non-disabled people views of how disabled people should think, feel and behave and those ‘who no longer need to build our lives on a denial and disavaluing of our background and the experiences of pain and triumph, sadness and joy, which form the reality of our upbringing.’ It is interesting to note that Brisenden here coins a new word, ‘disavaluing’ to capture the disabling appraisal he sees at work.

Brisenden stresses the fact that disability culture is built upon disabled people being ‘ruthlessly honest’ about ‘who we are’ and ‘our role within society’. I would link this back to Paul Abberley’s arguments about addressing disabled people’s oppression. It could be argued that this is a core element in making disability culture challenging and potentially empowering not only for individuals, but for groups of disabled people. Finkelstein and Morrison elaborate upon this when they write:

In order to participate meaningfully within the community members of this group must actively engage in the issues that confront them. In doing this they provide the material for their own cultural development that is self-determining and self-governing. (50)

In other words disabled people have to ‘interpret’ the world through their own eyes not just those of non-disabled people. This means looking afresh at perceptions of the world, how it is constructed and in whose interests it serves. This opens up the possibility of transforming ‘interpretation’ into ‘active participation’ which, in turn, not only acts as a challenge to the status quo, but also brings disabled people together ‘on their own terms’. In other words, creating disability praxis.

Disability culture can be viewed as contributing to the creation of social solidarity and the forging of a new social identity through the production of cultural activities. Disability art in specific contexts as we shall see is considered to be political, a tool to be used for social change. The production of art from this perspective becomes empowering because it allows the artist to challenge dominant presentations of disability and disabled people and often, as a consequence, create disabled people in their own image.  This ‘subversive’ activity could subsequently impact upon the viewer in an empowering way too.

Disability art and other cultural forms also has the potential of creating ‘space’ for disabled people to experience art, leisure and performance often denied them by mainstream culture. In a similar fashion disability art and culture can be empowering by ‘educating’ people to see themselves as disabled people in ways not available or accepted in mainstream circles. (51)

Galvin speaks of ‘a sense of connectedness that can break down the feelings of isolation and alienation’, this takes place according to Gill, by giving ‘definition and expression of our value as a community’ which ‘charges us up and enriches our lives, giving us energy and endurance against oppression.’ (52) Gill recognizes diversity among disabled people, but she is also aware of how society actively separates disabled people from one another, therefore she sees disability culture becoming a unifying and empowering force through the ‘expression of our beliefs and heritage in cultural activities’ which she believes ‘encourages mutual support and underscores our common values’. (53)

Disability culture is seen as contributing to giving disabled people a voice and a means of giving expression, including using symbols around the representation of both impairment and disability. It has already been noted that the notion of disabled people being ‘a distinct people’ or social group is considered as problematic for some, however, many disabled people view engagement in disability cultural activity as being a liberating experience; one of giving self-worth and validation through the celebration of difference.

Another example of disability culture empowering force, it is argued, is its ability to reach out to disabled people who might not immediately identify with the politics of disability or being ‘disabled’, however, by being exposed to disabled people’s stories or their ‘take on the world’, they can begin to engage with it ‘on their own terms’. It becomes a recruitment officer and organizer.

Given the nature of disabled people’s oppression, many have been disempowered by mainstream dominant culture; disability culture on the other hand, recruits, educates and equips disabled people to explore their own identities, differences, and values within environments they control and feel valued in. The exclusion and marginalization of disabled people within cultural production means that few role models exist or are known about, therefore many disabled artists break new ground.

What is evident from the research evidence is that growing numbers of disabled people are engaged in counter-culture activities on a daily basis. At the grass roots disabled people have been encouraged to ‘have a go’ and experiment which has given platforms to undiscovered talent and new art forms. This approach has led to some conflict and criticism. (54) However the importance of this kind of activity, which raises social, political as well as cultural implications, should not be underestimated.

In 2009 I questioned whether or not the direction of disability culture could maintain its radicalism, thus acting as a subversive edge against the oppressive nature of dominant culture, whilst at the same time giving disabled people progressive cultural forms to identify with. I want to briefly focus specifically on the British scene for a moment. Disabled people did become increasingly engaged in the production and distribution of a myriad of cultural and artistic forms. Tony Heaton in an interview for the BBC’s Ouch website explained:

“So I’d say disability art is art by disabled people which is informed either by their impairment or by the way society views disability; it’s part of a

developing culture and it’s a force for empowerment.” (55)

Art of course is only an aspect of culture, but the way Tony presents an either / or presentation of ‘disability art’ here returns us to the problematical areas spoken about earlier because there appears to be a certain ambiguity at work. Perhaps drawing upon an interchange that took place between Linda Rocco and Tony in 2019 we can gain some insight into how disability art is or at least was viewed:

“LR: Nowadays, do you think there is still the same drive to make art political and politics through art, as it was during the golden age of the Disability Arts Movement? Are the current generations still involved in the debate or they somehow remain fairly passive towards societal change? ….

TH: The drive back then was part of a wider push for an end to discrimination against disabled people, focussed creative, political and social action based on the notion of ‘equal opportunities’. The ensuing DDA legislation changed the energy, I think we waited for the legislation to create the change, the reality is that the legislation is largely weak, toothless and regularly breached, neutered even further now that it is subsumed into the Equalities Act 2010. If anything it was a pyrrhic victory as we are still waiting for true inclusion and our current politics, austerity and social disintegration mitigate against that. If we describe disability art as art made by disabled people drawing upon a lived experience of disability then we can see that there are still many disabled artists making very interesting work that falls into the canon of disability arts….” (56)

The points Tony makes about the impact of legislation echo my own observations, although I saw the DDA as a political defeat rather than a pyrrhic victory because I never subscribed to the idea that anti-discrimination legislation would enact social change; it was a means to an end. The false hope that legal rights would lead to ‘true inclusion’ assisted to dissipate the movement for social change, whilst at the same time, undermined the possibilities of forging a new social identity. What I see as being significant about what Tony said to Linda, is the last sentence: ‘If we describe disability art as art made by disabled people drawing upon a lived experience of disability’.

Here is this ambiguity I spoke of: where does ‘lived experience of disability’ lie in relation to ‘art by disabled people which is informed either by their impairment or by the way society views disability’? I retain the view that both disability art and culture can be viewed as contributing towards the forging of a new social identity, which is why I see it as the fourth cornerstone of disability politics, but it is vital to have absolute clarity as to what we mean by the term ‘social identity’. I hold the opinion that this was never adequately addressed as part of disability politics and clarity of meaning does not exist at this moment in time. Before developing this further, I want to situate the notion of social identity into some kind of context and link it to the possibilities of unpacking what lies behind the ambiguity mentioned above.

Henri Tajfel and John Turner developed Social Identity Theory which proposes that group formation goes through three stages:

Social Categorisation: this is seeing yourself as part of a group. As well as a personal identity (who you see yourself as) everyone has a social identity (the groups they see themselves as being a part of). Social identity may involve belonging to groups based on your gender, social class, religion, school or friends.

Social Identification: once you have a social identity, you automatically perceive everyone else you meet as either part of your ingroup (the ones who share the same social identity as you) or the outgroup. You pay particular attention to ingroup members and adopt their values, attitudes, appearance and behaviour.

Social Comparison: this is viewing your social identity as superior to others; it comes from regarding the products of your ingroup (the things your ingroup does, their attitudes or utterances) as better than the products of an outgroup. This leads to prejudice and, if you have the power to influence the outgroup, it will lead to discrimination too. (57)

I have employed aspects of this theory when exploring unconscious bias. One problem with it, in my opinion, is that it does not address the fact that disabled people are involved with dual social identities – one imposed by dominant ideologies and the other based upon being free from social comparison. This distancing from dominant ideas and the forging of new ones is what makes disability culture so complex and so difficult to comprehend. The descriptions of disability culture, especially coming from America, are often contested. I need to quote a number of times more from Steven Brown interspersed with one or two others. He wrote:

“People with disabilities have forged a group identity. We share a common history of oppression and a common bond of resilience. We generate art, music, literature, and other expressions of our lives and our culture, infused from our experience of disability. Most importantly, we are proud of ourselves as people with disabilities. We claim our disabilities with pride as part of our identity. We are who we are: we are people with disabilities.”(58)

The first part of this quotation mirrors Tony’s articulation; but what of the second part? Brown addresses this by referring to Paul Abberley:

“Impairment must be identified as a bad thing, insofar as it is an undesirable consequences of a distorted social development, at the same time it is held to be a positive attribute of the individual who is impaired.” (59)

How should this statement be interpreted? I see context as vital here because Paul explained that within dominant ideas and language associated with disability there is:

“.the deeply entrenched rejection of `impairment’ as a viable form of life and to the `common sense’, `natural’ and `unconscious’ nature of ideologies of impairment, disability and handicap. This rejection of the authenticity of impaired life forms is exhibited both in the obvious form of what Dartington, Miller and Gwynne (1981) call the “less than whole person” view, and its inverse, the “really normal” ideology, which finds its expression in everyday life in the exceptionalism of `but I don’t think of you as disabled’, denying a key aspect of a disabled person’s identity in what is intended as a compliment.” (60)

There is a relational reality here that is often overlooked, negated, or conflated within both dominant and subordinate ideas associated with impairment/disability. How and why impairments exist or are created, needs to be viewed as occupying a difference space to the social evaluations of the lives and lifestyles of people with impairments. Abberley himself stated:

“What is required is essentially an attitude of ambivalence towards impairment, that is ‘co-existence in one person of love and hate towards the same object’ Concise Oxford Dictionary (1964).” (61)

In other words we may seek to address the causes or origins of impairment, whilst at the same time, valuing and adopting a non-judgmental attitude those who live with an impairment. We cannot ignore the fact that ‘impairment’ is socially constructed, often ‘imagined’ through imposed values, and for many there is also a material reality to consider. The differential nature of impairment reality has to be factored into our appraisals of ‘lived experience of disability’, taking into account intersectional issues and cultural diversity. (62)

In my opinion there has not been an attitude of ambivalence towards impairment, and as a consequence, we witness how disabled people and their allies have sought to address the relational reality I spoke of earlier. This is not a shared agenda as there are differences and similarities across cultures. In Britain I believe we failed to engage with the implications of UPIAS correctly breaking the causal link between impairment and disability. Dominant socio-political and cultural representations of disability conflate personal bodily ‘restrictions’ with social ones. Thus impairment itself is viewed as the direct cause of all our social disadvantages. (63) When Brown, for example, states that many writers have emphasized “enabling aspect of disability”, I would suggest he is not referring to ‘disability as social restriction’ but rather, impairment reality and interconnected lifestyles. (64)

The right for individuals to feel ‘comfortable’ or ‘positive’ about living as people with impairments is something that we are demanding societies to acknowledge and accept, whilst ourselves acknowledging and accepting that not everyone who is significantly impaired will share this outlook. (65) I refrain however from endorsing Abberley’s view that impairment can automatically be “held to be a positive attribute of the individual” as it risks imposing external evaluations on how individuals may wish to see their own relations with their impairment. This reluctance to endorse Abberley’s view does not to negate the need for external ‘acceptance’ of a person’s impairment as part of who they are and, in turn, this being viewed an aspect of their social identity as a disabled person when articulated as such. What I believe disability politics and culture should be concerned with is the necessity to challenge the ways in which societies impose external oppressive generalised appraisals of who and what disabled people are and the devaluation of our lifestyles.

Again, I turn to Vic Finkelstein who expressed the view “that the willingness of disabled people to present a clear and unashamed self-identity and our ability to organise our own effective organisations for social change will greatly help the development of a disability culture.” (66) He identified two important elements:

“(a) Self-identity

Firstly, we must be clear that it is essential for us to create our own public image, based upon free acceptance of our distinctive group identity, before we can participate in the multicultural world. Such a cultural identity will play a vital role in helping us develop the confidence necessary for us to create the organisations which we need to promote the social change that we all want.

(b) Collective identity

Secondly, it is essential that all disabled people join together in our own organisations so that there is a creative interaction between disabled people who are involved with the politics of disability and disabled people involved in the arts. It is this interaction which can be particularly fruitful in helping us to take the initiative in developing a new disability culture.”  (67)

There is no fundamental disagreement between Vic and me here accept the question of self-organisation has become highly problematical. If we consider the quotation that I opened the blog with from UPIAS, we can see that it shows a constant throughout British disability politics, namely, the encouragement to “seek pride in ourselves, in all aspects of what we are.” Acceptance of ourselves and our own lifestyles; the experience of living with impairments within a disabling world, is at the heart of disability politics. Interestingly, Vic goes on to say:

“Nevertheless, for the first time in the history of humankind there is the real possibility of making the world fit for disabled people and consequently we need to encourage a real change in the way we present our identity to ourselves and others. The development of our own distinctive culture to express a rounded picture of the reality of our lives will help us gain a place of our own choosing in the multicultural society. The celebration of difference, we will then discover, is the celebration of humanity, of being members of the human family.” (68)

I view Finkelstein’s call for the development of our own distinctive culture to express a rounded picture of the reality of our lives as part of the recognition of human diversity – acknowledging the complexities of social relations. To what extent this mirrors the definition of disability culture across the globe, I am not sure. There is enough evidence to suggest disabled people world-wide have been expressing themselves in cultural as well as political terms. Whether or not it is possible or desirable to speak of a distinct disability culture remains open to debate. For disabled people who do identify as individuals who belong to an oppressed social group, then the impact of disability culture upon many of their lives can be described as empowering. If there are questions as to whether or not it is possible or desirable to speak of a distinct disability culture, then we would also need to question the extent disability culture is part of disability politics. A clue exists in part in the belief that the development of disability culture can aid disability politics in forging both an anti-hegemonic social identity and paradigm for defining disability. This however is not without consequences. Brown for example writes:

“Though life with a disability is valuable, what makes is difficult is handicap. The priority, therefore, should be on the removal of attitudinal, social, economic, educational, linguistic and cultural barriers and disadvantages our societies have created against disabled people. For too long, these oppressive aspects have not been taken seriously, if not completely ignored. [Thus] …. disabled people themselves as agents [of change] have taken the bold and historic initiative of changing the paradigm of disability from “the medical”, charity and tragedy to rights, culture and pride.” (69)

Is it adequate or correct to define the shifted paradigm of disability to be about rights, culture and pride? Personally, I regard this to be leaning towards a liberal reformist interpretation of disability politics. Of course, addressing the nuances or differing socio-political interpretations among disabled people’s movements has proved increasingly difficult over the last thirty years. Shifting the paradigm of disability from dominant ideologies and practice to alternative social interpretations or approaches has not been straight forward. In Britain, since the mid-1990s, I believe the decline of the Disabled People’s Movement not only led to increased rightward thinking on disability politics and culture, it also resulted in an influx of imported ideas from America and elsewhere which ultimately changed how disabled people viewed their own struggle. Our ‘movement’ was rebranded ‘the civil rights movement’ and we saw the ambiguous notion of ‘disability pride’ land on the scene. I wrote a poem called, ‘disability pride’, that sought to create the juxtaposition – taking pride in opposing disability. Such an approach seems at odds with Brown’s take to a degree which is largely American based, but it also seems at odds with aspects of Mike Oliver’s thinking as well.                                    

In Understanding Disability, we find Oliver writing on page five that:

“Throughout I shall attempt to remain within the distinction between impairment and disability developed by UPIAS…. Following from this, my definition of disabled people contains three elements; (i) the presence of an impairment;  (ii) the experience of externally imposed restrictions; and (iii) self-identification as a disabled person.” (70)  

The only difference between Mike and myself is that I would say: ‘the actual or assumed presence of an impairment’. As both can result in imposed social restriction. Whilst Oliver may have sought to stay loyal to UPIAS, I would suggest he slipped, because on page one hundred and fifty seven he stated:

“….cultural representations of the disability movement (Morrison and Finkelstein, (1993) provide a challenge in the stigmatisation of difference in its insistence that disability is a cause of celebration.” (71)

Sorry, I disagree totally with this assertion, believing it to misrepresent the argument forwarded by Morrison and Finkelstein.  If you see disability as the imposed restrictions as UPIAS did, why would you see it as ‘a cause of celebration’? What was being argued by Morrison and Finkelstein was that in order to create a new social identity, one that valued the lifestyles of disabled people, it is necessary to reveal the ‘culture’ that surrounds living with impairments in a disablist society. This is the recognition that impairment reality is part of who and what we are; it is the duality of accepting ourselves as we wish to be, whilst at the same time, throwing off the oppressive representations created by dominant ideologies and cultures. It is also about embracing the idea that impairment reality is part of the lifestyles of disabled people because it helps to shape and inform the strategies and activities which we employ to conduct every aspect of our lives: including shared cultural experiences.  

Morrison and Finkelstein wrote:

“The arts can have a liberating effect on people, encouraging them to change from being passive and dependent to being creative and active. We may not all want to be ‘artists’, producing and performing work, but arts events can provide another accessible route for looking at the world in relation to disabled people. Meeting together at a Disability Arts event can also provide rare opportunities for disabled people to exchange ideas. Having someone on stage communicating ideas and feelings that an isolated disabled person never suspected were shared by others can be a turning point for many.

However, unless there is a flowering of cultural activity new artists will not be inspired to develop more sensitive presentations of our place in society and to inform future generations. One of the ways of understanding long gone societies is to look at their ‘cultural artefacts’. If historians only uncover images of disability in charity advertising and stories of helplessness or courage, with no alternatives, what will that mean for a future population of disabled people?” (72)

This view supports how I juxtapose disability to arts, culture, etc. There is a need to address the ambiguity and conflation that exists in order to give disability culture an emancipatory role in disabled people’s lives. It is not uncommon to see certain disabled scholars and activists speaking of  “a more positive disabled identity”, but what do they mean? Is this the collective social identity defined by the social model as opposed to the oppressive “the disabled” (sic) i.e. individual abnormal freaks? What would a positive disabled identity, let alone a ‘more positive’, one look like?  Even if one moves away from the distinction between impairment and disability, it still makes no sense. As I have always argued, disability culture is a challenge to disablism and the dominant ideologies it works from. Our culture stems from our struggle with living disabled lives and actively opposing ‘able-bodied normality’ as the basis upon which ‘humanity’ is valued.

As I have previously stated, our impairments are part of who and what we are. Disability culture is about our shared experiences and encounters in a disabling world; this certainly is not viewing either impairment or disability as anything to celebrate. Why would we celebrate being oppressed or having to continuously   address the subjective evaluation of ‘impairment’ in cultural or political terms? I am not, for example, proud to have cerebral palsy; I am however proud as a person with CP to challenge how people like me are seen, treated and oppressively portrayed culturally. Proud to be part of a counter-culture that values our lifestyles, including our cultural expressions. No way would I want to be part of any movement which was insisting that disability is a cause of celebration. A movement that values diversity of being, respecting people’s own evaluation of their bodies/minds and lifestyles, is another matter altogether. Our culture is there to bury disability, not to celebrate it. This is what I gleamed from Morrison and Finkelstein’s argument.

Disability culture is therefore counter-hegemonic as articulated through this explanation:

“Discrimination against people on the grounds of ‘non-normal’ bodies or intellectual capacity places them outside the mainstream of social life. In order to participate meaningfully within the community members of this group must actively engage in the issues that confront them. In doing this they provide the material for their own cultural development that is self-determining and self-governing. This activity is an affirmation of existence despite insistent illustrations all around us which portray what we will never be!? For example, a deaf person goes to the theatre and experiences a hearing writer being translated; or a wheelchair user finds art gallery paintings endlessly drawn from the shoe using artist’s point of view. The struggle against disabling barriers, however, is an active and creative engagement. From this point of view the struggle to remove barriers could be regarded as the seed bed for human arts. For us, the only difference is that the barriers which we have to address are dissimilar to those faced by able-bodied people.” (73)

I both agree and disagree with the final sentence because there are common and dissimilar social restrictions facing disabled and nondisabled people. The emancipation struggle of disabled people has to be placed in a meaningful context and I see Vic Finkelstein providing this when he said:

“I believe that we cannot understand or deal with disability without dealing with the essential nature of society itself. To do this disabled people must find ways of engaging in the class struggle where the historical direction of society is fought, won or lost. It is in this arena that the boundaries of knowledge that have put disabled people aside from the ‘normal’ can and have to be openly questioned. For me repossessing the social model of disability means searching for openings in the structures of society where we might effectively contribute with others in the restructuring of society so that it is neither competitive nor disabling for all people.”  (74)

I have written this extensive blog because I believe that it is not possible to take back into our hands the radical social model of disability without disabled people grasping the cornerstones of disability politics.

Footnotes and references

(40)  Williams-Findlay, B. (2005) Speaking for Ourselves, (Oral history project), Scope: Time to get equal, Interview Williams-Findlay, B. (2005) Speaking for Ourselves (Oral history project), Scope: Time to get equal, Interview http://www.speakingforourselves.org.uk/index.php/interviews/williams_findlay Accessed 19/05/08

(41) Morrison, E. & Finkelstein, V. (1994) ‘Broken arts and cultural repair:  the role of culture in the empowerment of disabled people’. In J. Swain et al., Disabling Barriers – Enabling Environments, London, Sage Publications in association with the Open University. 122 – 128 p.126

https://www.independentliving.org/docs3/finkelstein93a.html

(42)  Hahn, H. (1985) ‘Towards a Politics of Disability: Definitions, Disciplines, and Policies’ The Social Journal 22: 87 – 105 p.87

(43) Barnes, C. (1997) ‘A Legacy of Oppression: A History of Disability in Western Culture’, in Disability Studies: Past Present and Future’, Barton, L. and Oliver, M., Leeds, The Disability Press, pp. 3 – 24 

(44) Swain, J. & French, S., (2000). Towards an Affirmation Model of Disability, Disability & Society, 15 (4), 569-582.

(45) Liggett, H. (1988) ‘Stars are not born: An Interactive Approach to the Politics of Disability’, Disability, Handicap & Society 3 (3) p.189

(46) Humphrey J. (1999) ‘Disabled people and the politics of difference’, Disability & Society, 14 (2), 173 – 188; Galvin, R. (2003) ‘The Paradox of Disability Culture: the need to combine versus the imperative to let go’ Disability and Society, 18 (5), 675 – 690 p.688

(47) Shakespeare, T. (2006) Disability Rights and Wrongs, Oxford, Routledge p.82

(48) Gill, Carol J. (1995) Research on urban planning and architecture for disabled persons in Iran

https://www.independentliving.org/docs3/gill1995.html

(49) Brisenden, S. (1988) What is Disability Culture? Disability Arts in London Magazine, December. 

(50) Morrison, E. & Finkelstein, V. (1994) p.120

(51) Marmiteboy, (2005) Marmiteboy On Toast

http://marmiteboy.blogspot.com/2005_09_01_archive.html

(52) Galvin, R. (2003) p.676

(53) Gill, Carol J. (1995)

(54) Cribb, S. (1993) Are disabled artists cotton-wooled, Disability Arts Magazine, 3/2, Summer: 10-11.

(55) Heaton, T. (2006) ‘Art of the matter: the National Disability Arts and Heritage Archive’, BBC Ouch website http://www.bbc.co.uk/ouch/closeup/artarchive/  

(56)  Rocco, L. (2019)  Reflections on the Disability Arts Movement

https://weareunlimited.org.uk/an-interview-with-tony-heaton-david-hevey-jo-verrent-members-of-the-disability-arts-movement/

(57) Henri Tajfel and John Turner, (1979) Social Identity Theory

http://www.age-of-the-sage.org/psychology/social/social_identity_theory.html

(58) Brown, S. E. (2002)

(59) Abberley, P. (1987) p.9

(60) Op. cit. p.165

DARTINGTON, T., MILLER, E. & GWYNNE, G. (1981) A Life Together (London, Tavistock).

(61) Ibid.

(62) John Lawson (2001) Disability as a Cultural Identity, International Studies in Sociology of Education, 11:3, 203-222

(63)  Barnes, C. and Mercer, G. (2005) Understanding Impairment and Disability: towards an international perspective

Click to access Barnes-EMW-Chapter-1.pdf

(64) Brown, S. E. (2002)

(65) Hambrook, C. (2009) Further towards an Affirmative Model of Disability

Further towards an Affirmative Model of Disability

Ikäheimo, H., (2009), ‘Personhood and the social inclusion of people with disabilities: a recognition-theoretical approach’, in Arguing about Disability: Philosophical Perspectives, edited by: Kristiansen K., Vehmas S., Shakespeare T., London: Routledge. http://hdl.handle.net/1959.14/87043.

(66) Finkelstein, V. (1987) Disabled People and Our Culture Development, Published in DAIL No. 8 p.4

Click to access finkelstein-Cultural-Development.pdf

(67) Ibid.

(68) Ibid.

(69) Brown, S. E. (2002

(70) Oliver, M. ( 2009) Understanding Disability: From Theory to Practice, Macmillan International Higher Education p.5

(71) Op. cit. p.157

(72) Morrison, E. & Finkelstein, V. (1994) p.127

(73) Op. cit. p.123

(74) Finkelstein, V. (2001) THE SOCIAL MODEL OF DISABILITY REPOSSESSED, MANCHESTER COALITION OF DISABLED PEOPLE p.5

Click to access finkelstein-soc-mod-repossessed.pdf

Here is the second part of four

The third cornerstone

As I have already stated, praxis can refer to the act of applying ideas. Therefore I view disability politics as being the way that disability praxis could be best realised. Manchester Coalition of Disabled People (MCDP) in 2010 produced a pamphlet entitled, A Brief History Of Disabled People’s Self-Organisation, and they correctly pointed out that:

“Many people do not realise that disabled people have led the way for around 100 years in campaigning for rights.

Since the first recorded organisation of disabled people formed in 1890 (British Deaf Association), disabled people have grown into a strong campaigning force.

Alongside the “action” of campaigning on the streets and lobbying in Council Chambers or the Houses of Parliament, there have been the “thinkers” of the emerging Disabled People’s Movement. Sharing experiences and ideas to work out a way to satisfactorily explain disabled people’s exclusion and how it can be overcome.” (27)

This is why I regard the self-organisation of disabled people as the third cornerstone of disability politics. It is why I got involved with Paul Hunt and other founders of UPIAS, the Liberation Network of People with Disabilities and assisted in the creation of the Birmingham Disability Rights Group before chairing the British Council of Disabled People. MCDP’s pamphlet explains that:

“The United Nations International Year of Disabled People in 1981 gave the opportunity for disabled people to find the funding to set up groups and organisations of disabled people.” (28)

The 80s witnessed a whole proliferation of self-organised groups of disabled people seeking to take control of their lives. BODP was established in 81 and had nine members as of November 82.

Local coalitions emerged in the first half of 80s and by the mid-90s BCODP had 122 members. BCODP was organised core at the heart of our Movement. We need however to strip back the mythology and look at where things were at back then. At the first Council meeting in 81, BCODP agreed to national action plans to – wait for it – tackle specific social barriers to our integration into the community. Standing committees were charged with assessing and campaigning for:

“Our housing needs and drawing up plans which will achieve our full integration; our educational needs, which will reduce by half the number of children attending special schools over the next decade and the growth of centres of independent living.” (29)

Was this politically naïve? You decide. Just over a decade later, as I have already indicated, some of the Movement’s founders were critical of its sole focus on obtaining ‘anti-discrimination legislation’ and how independent living, direct payments and rights were being viewed as detached from the social approach towards disability. In 2001 Vic Finkelstein argued Civil Rights were about individuals or groups of people – it was a legalistic approach. In the ‘rights’ approach, he said, parliament grants legal rights to those it defines as ‘disabled’. The focus is on identifying characteristics of the individual, rather than the nature of society, and then making selected ‘concessions’ to those so defined.

The mid 90s saw the first indication of a fundamental split within our Movement with a tendency emerging focused on accommodating to the service sector and solely engaged with protecting disabled people from ‘discrimination’ and/or making life better. This was at the time when Neoliberalism was about to roll back the progress our Movement had made and disabled people’s organisation were in decline. A number of things need to be drawn from this brief account of the Disabled People’s Movement.

The self-organisation of disabled people was always swimming against the tide because the essence for its existence was the struggle to overcome what was viewed as social barriers to our integration into the community. This presented a paradoxical situation where disabled people were attempting to self-organise in a society where they were being excluded and marginalised. The logistical difficulties facing disabled people’s organisations (DPOs) were immense.

At its height, BCODP was the umbrella for over a hundred and twenty DPOs, but many others remained outside and worked alone. Many DPOs, like Birmingham Disability Rights Group, sought to influence local conditions whilst at the same time being actively involved in national campaigning. What the relationship between BCODP and the Disabled People’s Movement was is open to debate. I spoke earlier about the Disabled People’s Movementbeing a social movement and I see this as being fundamental to the debate about the third cornerstone of disability politics: self-organisation.

A simplistic definition of a social movement is a ‘loosely organized but sustained campaign in support of a social goal, typically either the implementation or the prevention of a change in society’s structure or values.’ A more academic definition comes from Sidney Tarrow who defines a social movement as ‘collective challenges (to elites, authorities, other groups or cultural codes) by people with common purposes and solidarity in sustained interactions with elites, opponents and authorities. He specifically distinguishes social movements from political parties and advocacy groups.’ (30) Taken together there’s little doubt that in sociological terms – the Disabled People’s Movement fits the definition. I would suggest understanding the Disabled People’s Movement as a social movement helps us analyse its strengths and weaknesses. Oliver argued the Disabled People’s Movement was a social movement because:

•         it was peripheral to conventional politics

•         offered a critical evaluation of society

•         embraced ‘post-materialist’ or ‘post-acquistive’ values

•         had an internationalist perspective

Therefore what underpinned the disability politics of the Disabled People’s Movement was:

a) an emphasis on self-organisation;

b) a commitment to radical political action to promote change;

c) to improve the quality of disabled people’s lives and promote

    their full inclusion into society (31)

This returns us to the question of the tensions that existed between the pursuit of improving the quality of disabled people’s lives and the promoting of more radical interpretations of seeking ‘full inclusion into society’. These tensions increased I believe during the 1990s and beyond. In a previous blog, I wrote:

“By shifting the focus entirely on “Rights” the Movement lost sight of the bigger picture and halted any critical evaluation of capitalist society. As a result the ‘leadership’ through BCODP and Rights Now tied the Movement to a reformist agenda which centred primarily upon “Rights” as the key to unlocking the disabling barriers at the micro level of society. The disabling barriers at a macro level – the structures and systems of capitalist society itself were as a consequence played down. Suddenly ‘inclusive practices’ could remove disabling barriers and address disablism.” (32)

Is there a political shift between this position put forward by Vic Finkelstein in 1992 and the one articulated by Barnes and Oliver a decade later? Vic wrote:

“Living in space and time Human beings live by moving in space and time. However, these aspects of life are achieved not in the behaviour of individuals but by the collective will and action of many people sharing common goals. The modern city bus, no less than the sophisticated aeroplane, is the production of a collective will and shared experience. For many disabled people, however, these dimensions of our existence are suspended. What is undoubtedly needed, in the next phase of the movement of disabled people out of isolation in institutions, special education, special transport, unemployment, and so on, is the means to have a direct impact on the way our society plans and organises the delivery of public services and utilities. If living in the community is to have any serious meaning for disabled people then this must also mean having an impact on the shape of the community in which we live.” (33)

In their book, Oliver and Barnes stated that a ‘…key feature of the disabled people’s movement has been its focus on social exclusion and oppression. It argues that the barriers to disabled people’s inclusion are embedded in policies and practices based upon individualistic and medical approaches to disability.’ They however go on to write:

“The removal of these obstacles involves gaining control over material resources and the range and quality of services. Previously we suggested the aim of the movement was to be ‘consciously engaged in critical evaluation of capitalist society and in the creation of alternative models of social organisation … as well as trying to reconstruct the world ideologically and to create alternative forms of service provision.’” (34)

I respect both Mike and Colin, but this implies a shift, because to my mind it contains certain ambiguities; what does ‘gaining control over material resources and the range and quality of services’ add up in this moment in time? Exactly whom did Mike and Colin have in mind in terms of gaining control? Of course, I acknowledge that by the end of this particular chapter they state:

“Like Peters, Gabel and Symeconidon (2009) we agree that ‘notions of resistance are intended to offer hope and possibilities that inform and globalise the struggle to overcome the oppression of disabled people…However, we wish to add that the oppression of disabled people will only happen with major structural, economic, political and cultural transformation as well as resistance.” (35)

Perhaps I am making more of a meal of this than I should, but the positioning of self-organisation as a cornerstone of disability politics has huge ramifications because over the last twenty-five years both nationally and internationally, as  we have seen disability politics and self-organisation fracture with many DPOs and activists being incorporated into mainstream controlling agencies or adopting bio-psycho-social based policies and practices. (36)   

 From 1996 onwards BCODP and later UKDPC and the National Centre for Independent Living began to ‘re-invent’ the Disabled People’s Movement as a ‘rights based movement’ and in the process left radical disability politics behind. Where the left in the Movement saw the passing of the DDA as a defeat, the centre-right slowly but surely sought accommodation. The Movement began to lose sight of its aims and New Labour under Tony Blair isolated large sections of it whilst incorporating others into the “revisionist agenda” that stole the language and concepts of the Disabled People’s Movement but emptied them of their radical meanings and replaced them with watered down versions as a make shift position until the neoliberal agenda for welfare reform kicked in.

The significance of this is two-fold in my opinion. Firstly, it led to the Disabled People’s Movement becoming only a rump of its former self and, over time, it has lost sight of its original aims and methodological approach. What this means is it offers no leadership to the disabled community as remains in a static time warp. Many DPOs employ the same language they used in the 1990s but with little or no reference to the nature current struggles facing disabled people. The majority of disabled activists therefore fall into two broad camps – a radical resistance current who still hold onto a political perspective hewn from aspects of disability politics – and a reformist current which is a hybrid of disability charities and DPOs who employ ‘fusion politics’ which is basically a mixture of the dominant approach to disability coated with a reformist bastardised social model of disability. These people offer no serious challenge to the Government or disablism.

Secondly, it seems highly questionable to speak about a Disabled People’s Movement under these conditions because the original aims have been “lost” or placed upon a back burner and resources have dried up forcing many to close or turn to the dark side where they become reformist market-led service providers. Over the last decade and a half there have been calls from DPOs and activists to breathe new life into the Disabled People’s Movement but nothing concrete has emerged as a result. I still hold that the nature of disabled people’s oppression requires forms of self-organisation, but I‘m less inclined to believe this is best served through traditional DPOs. New forms of self-organisation are needed, but these must also have the capability of building alliances along the lines Vic suggested.

The final cornerstone I believe is the most controversial for many reasons. Some question the very existence of disability culture whereas others disagree of what it is. The issue of disability culture becomes a nuanced subject matter, hence its complexity. A number of factors co-exist to heighten this complexity and therefore in this blog, I cannot do justice to all of them. In an article entitled, ‘What Is Disability Culture?’, Steven E. Brown makes some important observations in relation to these factors:

“I have identified and shared example after example to demonstrate the existence of disability culture, but it is much more difficult to define the phrase. There are many reasons for this. The words, ‘disability,’ and ‘culture’ are each value-laden, charged with emotion in every culture I have encountered. Almost all of us identify with more than one culture.” (37)

Throughout this next section of the blog this issue raises it head time and time again, especially with how ‘disability’ is employed and how it is viewed in terms of the relationship between disability culture and disability politics. To explore this relationship, I believe it is necessary to drill down into a key assertion made by Brown, namely that:

“A disability culture acknowledges life with a disability as a way of life, which means that the life of disabled people is not necessarily tragic or devalued. The creation of a disability culture is a basis for the establishment and implementation of disability rights – a requirement for equality – without creating or deepening “dilemma of difference”. This is to say, the establishment of disability as a way of life ensures disability-conscious social organizations. Within this approach, Deaf people, with their distinct culture and language, could make a significant contribution. Disability culture is a creation of new values.”  (38)

The first problematical area is how to differentiate the meanings and usage of ‘disability’ and ‘impairment’ because, as we shall see, this impacts upon our perception of what is meant by ‘lived experience of disability’. (39) The second problematical area is to what extent there is a shared understanding and belief that the creation of disability culture:

“….is a basis for the establishment and implementation of disability rights – a requirement for equality – without creating or deepening “dilemma of difference”. This is to say, the establishment of disability as a way of life ensures disability-conscious social organizations.”

Both of these problematical areas will be addressed as far as is possible.

In a politico-cultural sense, I argued in 1994 that disabled people were experiencing a ‘dual identity’; one imposed from the outside through attitudes, practices and imagery associated with ‘the disabled’ (sic) and an emerging new identity that they are forging through their own cultural expression and politics. I will return to this in due course, however, in the meantime, I wish to express the view that the fourth cornerstone of disability politics is about the role of disability culture in forging a new social identity.

Footnotes and references

(27) See: https://historicengland.org.uk/content/docs/research/brief-history-disabled-peoples-self-organisation-pdf/ p.5

(28) Op. cit. p.11

(29) Williams-Findlay, B. (2017) Speaking at the National Disabled People’s Summit         

(30)  Tarrow, S. (2005) The New Transnational Activism Cambridge University.

(31) Oliver, M. and Barnes, C. (2012), The New Politics of Disablement, London: Palgrave Macmillan, p.173

(32) Reflections on Disability Politics  April 28, 2020 https://mtalf.home.blog/

(33) See: https://disability-studies.leeds.ac.uk/wp-content/uploads/sites/40/library/finkelstein-Transport-Inclusive-Living.pdf p.3

(34) Oliver, M. and Barnes, C. (2012), The New Politics of Disablement, London: Palgrave Macmillan, p.173

(35) Op. cit. p.176

(36) Williams-Findlay, B. (2019) p.

(37) Brown, S. E. (2002) What Is Disability Culture? Disability Studies Quarterly

Spring 2002, Volume 22, No. 2 pages 34-50 <www.dsq-sds.org> 

(38) Ibid.

(39) Personal experience of living with an impairment intersects with doing so in a disablist society.

“We do not organise because we are people first, nor because we are physically impaired. We organise because of the way society disables physically impaired people, because this must be resisted and overcome. The Union unashamedly identifies itself as an organisation of physically impaired people, and encourages its members to seek pride in ourselves, in all aspects of what we are. It is the Union’s social definition of disability which has enabled us to cut out much of the nonsense, the shame and the confusion from our minds.” Disability Challenge 1

Introduction

I wrote a Facebook post recently asking what might constitute the four cornerstones of British disability politics. The idea of a cornerstone is that it acts as an important quality or feature on which a particular thing depends or is based. A few people did respond; however I felt their suggestions were more to do with aspects of what disability politics should be rather than identifying the central foundations that had informed them.

After advice, I have divided my original blog into four parts where I will outline what I see as the four cornerstones alongside a critique of specific issues surrounding how they influenced the development of disability politics and praxis as they emerged over a twenty year period. The writings of Vic Finkelstein will feature heavily in this blog, but I also draw upon other scholars as well. What I am unable to do in this blog is to give any significant attention to the question of impairment and its positioning either inside or outside disability politics. Where I will introduce impairment is in relation to rejecting seeing disability as ‘an individualised problem’, but at the same time acknowledging impairment as the basis for people with impairments’ social oppression. This is along the lines of the arguments made by Paul Abberley. It is also a feature of my support for breaking the direct causal link between impairment and disability as advocated by the Union of Physically Impaired Against Segregation’s (UPIAS). I believe the distinction between impairment and disability (disablement) remains crucial to radical disability politics, but it is still an abused concept too often than not. The other consideration is in relation to how disability culture is articulated and its positioning within the debate.

At the centre of the debate is the relationship between theory and praxis; did the Disabled People’s Movement under-develop disability praxis by abandoning the foundations upon which disability politics were built? By praxis I mean ‘the process by which a theory or ideas relating to the struggle against disablement is enacted, embodied, or realized. “Praxis” may also refer to the act of engaging, applying, exercising, realizing, or practicing ideas.’ (1)

I wish to start our journey at the end rather than at the beginning by stating that in my opinion the Disabled People’s Movement, as a social movement, does not exist as it once did. I will consider the nature of our movement much later, but here I want to acknowledge that:

a) there are still elements of disability politics in play; b) there are still a number of disabled people’s organisations working away on various fronts; c) that resistance to the Age of Austerity has been going on for a decade; but I would argue there is no longer a collective consciousness around the four cornerstones of disability politics. Attempts to kickstart the Movement has failed but most importantly, I believe, is the fact that the radical ideas contained within UPIAS’ ‘interpretation’ of disability no longer informs disabled activists’ praxis. Further, I believe it is inadequate to try to reboot the movement via trying to reinvigorate Mike Oliver’s social model because, as I plan to argue here, it cannot be done without exploring the four cornerstones of disability politics. Consideration of theory, methodology and political action.

The social interpretation of disability 

In 2012 Mike Oliver and Colin Barnes informed us that to them the term ‘disablement’ “….refers to the economic and social processes that ultimately create both impairment and disability. It is of course mediated by personal experience of impairment and influenced by the politics of disability as well as societal responses ….” (2) I share this view of disablement however I will return to the question of personal experience of impairment much later in the blog. Linked to disablement is the notion of disablism and I share this view captured by A.J. Withers:

“Lisa, author of Lizy Babe’s Blog, writes: ‘If “racism” is discrimination on the grounds of race, surely it is logical that the word for discrimination on the grounds of disability would be “disablism”?’ She goes on to argue that ‘ableism’ is derived from the medical model of disability – the idea that a disability is something we have, that we are disabled by a lack of ability.” (3)

The only difference between Lisa and myself is the name given to the dominant ‘model of disability’ – medical, as opposed to, individual tragedy. It is vital to acknowledge that a number of definitions of disability exist and that within my writing, I share the definition the Union of the Physically Impaired Against Segregation and Vic Finkelstein put forward:

“Disability is something imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society. Disabled people are therefore an oppressed group in society”  (4)

Thus disability is the encountered externally imposed social restrictions created by disablement and maintained through disablism. To assist my understanding of how this grounds disability politics and praxis, I developed by own ‘disability lexicon’ where I view the terminology or definitions working through either the juxtaposition of disability as (social restriction) with whatever follows i.e. disability politics means ‘politics opposed to disability’ or that which results from disability as (social restriction) i.e. disability discrimination.

In this blog therefore disability politics are seen as: the theory and practice employed in action during the struggle to emancipate disabled people. The four cornerstones being what had underpinned the action thus shaping the praxis.

Why am I talking about cornerstones of disability politics?

Vic Finkelstein wrote in 2007:

“The ideological problem facing the disability movement in the UK from the 1990s onwards was whether the social model of disability was still relevant in guiding our struggle or whether social changes had advanced so far that the original model no longer reflected the social context in which it had been created? Is the ‘rights’, or ‘potpourri’, model of disability now more in tune with the market economy expanding into the health and social services sector of society? Was the social model of disability really understood?” (5)

By the end of the series of blogs I will have attempted to address these questions asked by Vic.

Francis Hasler once stated that the social model of disability was ‘the big idea’ of the disability movement. This is similar to something Mike Oliver claimed and was then challenged by Vic Finkelstein. Vic wrote:

“Mike maintains that these advances were founded on three big ideas: “the social model of disability, independent living and civil rights”. I don’t agree. I don’t see how ‘components’ of a model can be given equal value to the model itself!” (6) Why did Vic forward this view? Here is his theoretical logic:
“One underlying theme has remained the same throughout all my writing on ‘disability’ since I came to the UK – ‘disability’ should be understood and addressed as a social (i.e. comprehensive) and not as a personal (i.e. individual) phenomenon. Even when a single approach is emphasised for a given period, the UPIAS ‘interpretation’ of disability (and logically the ‘radical’ social model of disability) makes no sense if a one component (or attribute) is selected as providing the only route to emancipation. The ‘radical’ social model of disability provides an overarching view of disability and cannot be placed alongside selected elements as if they were of equal value.”  (7)
I support the argument being forward here by Vic. We could argue till the cows come home as to whether or not we are talking about models, interpretations, approaches or cornerstones, but what we are or should be primarily concerned with is the ideas and practices that further the emancipation struggle of disabled people. This has to begin with an understanding of ‘an overarching view of disability’. The question I was posing therefore was: on what basis has our understanding and, subsequently, the addressing of ‘disability’ been articulated within ‘disability politics’? I believe, as previously stated, the central foundations of disability politics had four cornerstones.

The first cornerstone

The first cornerstone was established upon the understanding that definitions of ‘disability’ are historically specific. Given this, when addressing disability as oppression, we are identifying particular social relations. As Gleeson explains:

“Disability in its current form is said to have emerged at the time of the industrial revolution, with the growth of the commodity labour market a key factor in the process of disablement … (thus) the fundamental relationships of capitalist society are implicated in the social oppression of disabled people.” (8)

With these fundamental relationships comes the nature of disabled people’s social oppression – carried via our unequal and differential treatment which led to and continues as our exclusion from and marginalisation within mainstream social activities. To legitimate our treatment disability became socially constructed around seeing it as an absence of functional loss and/or normality. Descriptions of the ideological purchase and practical application of this construction are found within the ‘medical’ or ‘individual tragedy’ models of disability.

Meike Alexandra Niess informs us:

“Oliver provides a detailed analysis of how the mode of capitalist production as well as the ideological mode of thought have created an individual understanding of disability. The organisation of wage labour and the free market economy have promoted an individualised notion of disability. Furthermore, the rise of scientific medicine has led to it being used as mechanism of social control and has played a major part in the creation of the oppression of people with impairments. This medicalisation has had major impact on the lives of disabled people as it has determined welfare policy, the provision of individual technical aids, education and the distribution of work.”  (9)

Within this quotation we have both the material and ideological underpinning of disabled people’s social oppression. The detailed analysis spoken of here employed a historical materialist approach however I share Paul Abberley’s criticism that neither Finkelstein nor Oliver adequately drilled down far enough into the nature of disabled people’s oppression. The absence of a social model of impairment has had, in my opinion, a profound impact upon disability politics because fundamental considerations were not incorporated into the social approaches towards disability. Paul argued:

“For a theory of disability as oppression however an important difference arises when we consider the issue of impairment. While in the cases of sexual and racial oppression, biological difference serves only as a qualificatory condition of a wholly ideological oppression, for disabled people the biological difference, albeit as I shall argue itself a consequence of social practices, is itself a part of the oppression. It is crucial that a theory of disability as oppression comes to grips with this `real’ inferiority, since it forms a bedrock upon which justificatory oppressive theories are based and, psychologically, an immense impediment to the development of political consciousness amongst disabled people. Such a development is systematically blocked through the naturalisation of impairment.” (10)

It is beyond the scope of this blog to address Paul’s concerns, but in my opinion, theorising of disability has been flawed because the ‘relations’ between impairment and disablement have never been adequately addressed. What he highlighted for me is how the first cornerstone connects with the second. The following quotations demonstrate how this works. Paul wrote:

“Some of the general effects of the oppression of disabled people are as follows.

(1) It discourages individuals from trying to take up the `privileges’, to use Stone’s …. somewhat curious term, of disability and thus exempt themselves from the work process.

(2) Because of negative stereotypes and material disadvantages connected to disability it encourages people, where possible, to normalise suffering and disease so as not to include themselves in a despised and disadvantaged sub-group.

(3) It helps to constitute part of a passive ‘sub-class’ of welfare recipients (Leonard, 1984) which serves as a powerful warning against falling off the achievement ladder.

(4) By presenting disadvantage as the consequence of a naturalised `impairment’ it legitimises the failure of welfare facilities and the distribution system in general to provide for social need, that is, it interprets the effects of social maldistribution as the consequence of individual deficiency.

I believe Stone’s use of ‘privileges’ resonates with the scrounger narratives seen within neoliberal capitalism.

Abberley has outlined how the individual tragedy model of disability has impacted upon the lives of disabled people. Later, I will return to these four points and explain why they became problematic under neoliberal capitalism. There is a logical progression here from identifying the hegemonic power of ‘the individual tragedy’ approach towards disability to the task of constructing a socio-political challenge as part of the emancipation struggle of disabled people. The link can be seen here when Paul says:

“In contrast to this, a theory of disability as oppression will attempt to flesh out the claim that historically specific categories of the `disabled people’ were constituted as a product of the development of capitalism, and its concern with the compulsion to work. This remained until the late nineteenth century largely the task of legal agencies, but the rise of scientific medicine resulted in the transfer of policing from legal to medical authorities. While this clearly led to certain transformations in the situation of disabled people, medical ideology too devalues the impaired modes of being, at the same time as it naturalises the causes of impairment.” (11)

When considering UPIAS’ and Oliver’s social approaches towards disability as forming the second cornerstone of disability politics, I believe it is necessary to consider Abberley’s belief that:

“A theory of disability as oppression, then,

(1) recognises and, in the present context, emphasises the social origins of impairment;

(2) recognises and opposes the social, financial, environmental and psychological disadvantages inflicted on impaired people;

(3) sees both (1) and (2) as historical products, not as the results of nature, human or otherwise;

(4) asserts the value of disabled modes of living, at the same time as it condemns the social production of impairment;

(5) is inevitably a political perspective, in that it involves the defence and transformation, both material and ideological, of state health and welfare provision as an essential condition of transforming the lives of the vast majority of disabled people. (12)

The second cornerstone

The task of constructing a socio-political challenge as part of the emancipation struggle of disabled people, I would suggest is the second cornerstone and the one which disability politics relies upon the most. I want to put forward the view that UPIAS’ interpretation and Oliver’s social model were massive contributions in developing our disability politics, but the work that needed doing was not completed because our Movement failed to use them correctly as part of our ‘disability praxis’ and, therefore as a Movement, did not recognise the fact they were but one component (or attribute) of the praxis we had to develop.

The radical nature of a vital part of disability politics was lost in the early 1990s. The roots of the demise of radical disability politics as I have discussed elsewhere was the development of alternative watered down versions of the social approach towards disability. (13) As with most social movements, and the Disabled People’s Movement was one, there is a coming together around broad aims which are open to interpretation. These broad aims over time were ripped from this crucial cornerstone of disability politics and surrounded by interpretations of Oliver’s ‘social model’ which were for the most part, free of employing a historical materialist approach to viewing disability and, as a consequence, no longer tied to an anti-capitalist transformative project. The radical social approach acknowledges that if ‘the fundamental relationships of capitalist society are implicated in the social oppression of disabled people’ then only by changing or dismantling these relationships will the emancipation of disabled people be achieved. Finkelstein stated:

“Our society is built on a competitive market foundation and it is this social system that disables us. From this point of view disabled people are forced to live in a social prison. While no one can object to campaigning for ‘rights’ so that the prison in which we live is made more humane it is only a political buffoon who believes that exploring prisoner experiences can lead to emancipation! Nothing less than dismantling the prison and replacing it with a non-competitive form of society can break-down the doors which bar our emancipation. From this point of view what happens to disabled people is an integral part of the way our society is organised and structured. In fact we can argue that what happens to disabled people exactly mirrors where humanity is going wrong.” (14)

The nature of capitalist societies creates and maintains disabled people – i.e. it disables people with impairments by excluding them from and/or marginalising them within mainstream social activities. UPIAS were clear:

“The Union’s eventual object is to achieve a situation where, as physically impaired people, we all have the means to choose where and how we wish to live. This will involve the phasing out of segregated institutions maintained by the State or charities. While any of these institutions are maintained at a huge cost, it is inconceivable that we will all receive in addition the full resources needed to provide us with a genuine opportunity to live as we choose. This point applies not just to residential homes, hospital units, hostels, villages and settlements, but also to other kinds of segregated facilities. As long as there are vastly expensive special schools, colleges and day-centres, heavily subsidised workshops and factories, and separate holiday camps and hotels, there can be no question of sufficient alternative provision being made to ensure that we all have a real opportunity of equal participation in normal educational, work and leisure activities.” (15)

The first sentence is of crucial importance as it contains the essence of disability politics, whilst at the same time casting a shadow over what followed. UPIAS’ aims and objectives focus solely on the needs of physically impaired people because this was their organisational base; they were not in a position to speak for other impairment or oppressed groups. They were a self-determined, radical ‘union’ of physically impaired people offering in the first instance, mutual aid. Their focus was to end segregation, (that required deinstitutionalisation), and to support the removal of obstacles preventing participation in standard mainstream activities.

Here is the rub; UPIAS spoke of their ‘eventual object’ which I read as being self-determination. In my opinion there is a certain ambiguity here because does this work within the framework of acknowledging that it is the current social system that disables us or not? I once wrote:

“Disabled people’s social oppression revolves around our relations with the rest of society. In simple terms we want to be included in structures, systems, and practice which are managed by powers that have no desire whatsoever, unless pushed, to accommodate us as this would threaten the status quo. Our Movement is confronted by a huge contradiction: we want to end our oppression by entering a society created in ways that reject us at every turn. Historically, two approaches have been used to address this contradiction: seek improvements within the system versus seeking to transform it.” (16)

Does UPIAS refer to ‘the eventual object’ because it can only be fully realised within a transformed post-capitalist society? I am asking this because over the years I have heard disabled people, including activists, talking about wanting ‘the same opportunities’ as nondisabled people. What does this actually mean? Does it fit in with either the UPIAS ‘interpretation’ of disability or the ‘radical’ social model of disability? I would suggest the answer lies in understanding the traditions that radical disability politics emerged from: Marxism and class struggle. The ambiguity stems from a political tension that is always there for those fighting injustice – are they seeking reform or revolution? A definition of the difference between reform and revolution would be that:

“A reform aims at improving the status quo by modifying laws, policies and practices, whereas a revolution aims at completely overthrowing the status quo, eliminating the existing order and reinstating a new and improved system.” (17)

I would argue that deinstitutionalisation, inclusive practice, civil rights, independent living, are all examples of ways of making the way we live more humane, but alone they do not make significant changes to the entire system and as a result do not fundamentally alter the oppressive ways in which disabled people are seen and treated. Further, I would state, radical disability politics therefore supports the ‘betterment’ of the lives of disabled people through “campaigning for ‘rights’ so that the prison in which we live is made more humane”, but they understand that:

“Nothing less than dismantling the prison and replacing it with a non-competitive form of society can break-down the doors which bar our emancipation.”

The two cornerstones of disability politics I have outlined so far stem from the radical interpretation of disability. As I eluded to earlier, with the emergence of the Disabled People’s Movement, more reformist facing interpretations and models came into being. When the British Council of Organisations of Disabled People (BCODP) came along, both UPIAS’ radical interpretation of disability and its agenda became both diluted and distorted. Within my own articulation of the social approach, I have always spoken of ‘the exclusion and marginalisation’ of disabled people from mainstream social activity because I believe acknowledging this distinction is vitally important however I believe it has been lost over time. We could debate whether or not deinstitutionalisation, a central plank of UPIAS’ agenda, was actively engaged with by the Disabled People’s Movement. With critical hindsight I would say it was not. In addition, I believe the failure to address how disablement and disablism operated from a radical social approach resulted in crude forms of disability equality training which undermined the development of disability praxis along these lines. Talking about ‘barriers’ led to generalised descriptions of what they were and at times underplayed the nature of the socialised restrictions disabled people encountered. What then happened was that as part of the training and, subsequently taken into policy making and campaigning, ‘disabling barriers’ were allocated to specific groups rather than adopting an approach that worked the other way around: exploring how specific groups encountered restrictions caused by the collective encountering of disablement.

To support my criticism of what became watered down disability politics and praxis, I want to return briefly to UPIAS’ argument. The core argument within the UPIAS interpretation of disability was:

“We as a Union are not interested in descriptions of how awful it is to be disabled. What we are interested in, are ways of changing our conditions of life, and thus overcoming the disabilities which are imposed on top our physical impairments by the way this society is organised to exclude us. In our view, it is only the actual impairment which we must accept; the additional and totally unnecessary problems caused by the way we are treated are essentially to be overcome and not accepted.” (18)
Personally, I still favour this articulation of disabled people’s social oppression – the social interpretation and radical model of disability have always been about ‘ways of changing our conditions of life, and thus overcoming the disabilities which are imposed on top our physical impairments by the way this society is organised to exclude us.’

What has been under-resourced is an exploration of, and strategies to address, other ‘disabilities’ encountered by groups of people with impairments that are not physical. Due to the hegemonic power of the individual tragedy approach to disability, the Disabled People’s Movement found the language problematic and shifted away from UPIAS’ usage of ‘disabilities’ [meaning social restrictions] to substituting in its place the term, ‘disabling barriers’ – I believe this is understandable because of the desire to make things easier to grasp, nonetheless, with hindsight, I believe it was a political error and became part of the undoing of the radical approach fostered by UPIAS. Call me a semantic, but ‘overcoming disabilities’ and ‘removing disabling barriers’ are not one and the same.

If the task of constructing a socio-political challenge as part of the emancipation struggle of disabled people is the second cornerstone of disability politics, then we need to confront an elephant in the room. Many people with a variety of impairments complain that the social model of disability excludes them. Nevertheless, I believe this is not the real issue; the root of the problem lies with the shift within disability praxis. We need to acknowledge that the UPIAS ‘interpretation’ of disability was only applied to people with physical impairments at its birth. I challenge anyone to inform me when and how this ‘interpretation’ of disability was extended to include other people with impairments or was it simply assumed when the BCODP was formed or when the Movement embraced other versions of the social model? Mike believed his social model included all groups of people because he wrote:
“Using ‘disabled people’ does not mean that I do not recognise differences in experience within the group but that in exploring this we should start from the ways oppression differentially impacts on different groups of people rather than with differences in experience among individuals with different impairments.” [emphasis added – BWF] (19)

Many times I have complained about how UPIAS’ interpretation and Oliver’s social model were watered down and rearticulated as ‘a rights model’ or simply spoken about as being concerned with ‘barrier removal’. I will return to the question of ‘disability rights’ later, but I want to stay with the issues around disability politics and praxis for the time being. Ellen Clifford’s recent book acknowledges the diversity of disabled people and correctly identifies the near absence within disability politics of the development of exploring the ways oppression differentially impacts on different groups of people. (20) In my opinion this challenge to disability praxis includes the need to understand how intersectionality is concerned with:

“the interconnected nature of social categorizations such as race, class, and gender as they apply to a given individual or group, regarded as creating overlapping and interdependent systems of discrimination or disadvantage” – applies to the radical social approaches to disability. (21)

This underdevelopment however should not be confused with the current practice found within mainstream institutions where work is often conducted within impairment based silos.

This underdevelopment coincides with challenges to ‘the’ social model and de facto disability politics and praxis. Once again, I have some sympathy with how Vic analysed some of these challenges when he wrote:

“By the year 2000 the ‘rectifiers’ were secure enough to state: ‘We need to produce an updated social model of disability that; includes a positive statement about us; recognises our diversity and difference; recognises institutionalised discrimination; talks about choice; recognises that not all the things that exclude us are about society’s barriers; and talks about barriers (attitudes and access).’ (22)

This statement is generalised enough to cover all human social behaviour and is quite useless as a ‘disability’ model – a real ‘shopping basket’ approach which enables people to pick and choose any interpretation which happens to suit their personal ambitions; and it perfectly matches the privatisation programme of new labour for a free market in health and social services.”  (23)

What Finkelstein is describing here is the death of the Disabled People’s Movement in my opinion and the emergence of a hybrid Disability Movement as Oliver and Barnes spoke of in 2012 and I wrote about in articles for Disabled People Against Cuts and a recent book chapter. (24) This hybrid Disability Movement was established by the disability charities, aided by New Labour and also included the market facing disabled people led organisations who had long abandoned what Emma Round spoke of in relation to my original post; the “liberatory principles, such as anti-capitalism, and in wider terms, anti-(unjust)-hierarchies of power.” (25)

I would also put forward the view that the simplistic approach to ‘barrier removal’ stunted the radical social understanding of disablement. As we have witnessed, the ruling classes often absorb and transform radical ideas into the status quo. Today, the World Health Organisation’s International Classification of Functioning, can offer a bio-psycho-social model that still has at its core the medicalisation of diverse bodies, but at the same time, offers a nod and wink at ‘removing disabling barriers’. (26)

I have made the second cornerstone and my critique of it the main element of this blog because constructing a socio-political challenge to the social oppression of disabled people is after all the driving force behind disability politics. This is why I also view the issue of disability praxis as being important. The radical social interpretation of disability needs to be placed in context – how and to what extent was it grounded within disability politics?

Footnotes and references

(1) https://en.wikipedia.org/wiki/Praxis_(process)

Freire, P. (1993) Pedagogy of the oppressed ( New rev. 20th-Anniversary ed.). New York: Continuum.

(2) Oliver, M. and Barnes, C. (2012), The New Politics of Disablement, London: Palgrave Macmillan, p.7

(3) See: https://stillmyrevolution.org/2013/01/01/disablism-or-ableism/

(4) See: https://disability-studies.leeds.ac.uk/wp-content/uploads/sites/40/library/UPIAS-fundamental-principles.pdf p.4

(5) See: Finkelstein, V. (2007) The Social Model of Disability and the Disability Movement

https://disability-studies.leeds.ac.uk/wp-content/uploads/sites/40/library/finkelstein-The-Social-Model-of-Disability-and-the-Disability-Movement.pdf  p.14

(6)  Op. cit. p.6

(7) Ibid.

(8) Gleeson, B. J. 1997: Disability Studies: a historical materialist view. Disability and Society, 12 (2), 179-202. p.196

(9)  See: https://disability-studies.leeds.ac.uk/wp-content/uploads/sites/40/library/neiss-MNiess-DissertationMeikeNiess.pdf p.11

(10) Abberley, P. (1987) ‘The Concept of Oppression and the Development of a Social Theory of Disability’ Disability, Handicap and Society, Vol. 2, no.1, 160 – 178; p.165

(11) Op. cit. p.176

(12) Ibid.

(13) See: https://dpac.uk.net/2012/12/a-question-of-intent/

(14) Finkelstein, V. (2001) THE SOCIAL MODEL OF DISABILITY REPOSSESSED, MANCHESTER COALITION OF DISABLED PEOPLE – p.4

(15) See: https://disability-studies.leeds.ac.uk/wp-content/uploads/sites/40/library/UPIAS-UPIAS.pdf p.4

(16) Williams-Findlay, B. (2017) Speaking at the National Disabled People’s Summit

Disabled people ‘will go into government alongside Labour’, says McDonnell

(17) Squadrin, G. Difference Between Reform and Revolution

Difference Between Reform and Revolution

(18) See: https://disability-studies.leeds.ac.uk/wp-content/uploads/sites/40/library/UPIAS-fundamental-principles.pdf p.5

(19) Oliver, M. (1999) CAPITALISM, DISABILITY AND IDEOLOGY: A MATERIALIST CRITIQUE OF THE NORMALIZATION PRINCIPLE

https://disability-studies.leeds.ac.uk/wp-content/uploads/sites/40/library/Oliver-cap-dis-ideol.pdf P.2

(20) Clifford, E. (2020) The War on Disabled People, Capitalism, Welfare and the making of a Human Catastrophe, Zed Books

(21) See: https://www.lexico.com/en/definition/intersectionality

(22)  See: https://disability-studies.leeds.ac.uk/wp-content/uploads/sites/40/library/finkelstein-The-Social-Model-of-Disability-and-the-Disability-Movement.pdf  p.3

(23) Ibid.

(24) Williams-Findlay, B. (2019) ‘The Disabled People’s Movement in the Age of Austerity: Rights, Resistance and Reclamation’ (128 – 148) in Resist the Punitive State: Grassroots Struggles Across Welfare, Housing, Education and Prisons Edited by Hart, Greener, Moth,  Pluto Press

(25) Comment by Emma Round on Bob Williams-Findlay Facebook page on 25/10/20

(26) See: https://www.cdc.gov/nchs/data/icd/icfoverview_finalforwho10sept.pdf

It is perhaps ironic that I struggle to recall the details of a day that I claim to be one of the days I will never forget. When recounting events of twenty eight years ago, the memory becomes an unreliable source for information, therefore photographs, TV footage, and texts offered by others act as triggers to unlock what has been buried or stored away as symbolic emotional ties. The apparent contradiction exists primarily because what I recall is not so much the blow by blow activities that took place, but my emotional scars which I have carried with me ever since. These scars are part of my consciousness, made up of good and bad responses, to the encountered social oppression I have lived through.

The Block Telephon protest was a marked watershed for the Disabled People’s Movement. For a decade, the movement had constructed its base and begun to forge a collective political identity, around seeing being ‘disabled’ as the oppressive outcome of ‘unequal and differential treatment’ encountered by people viewed as “tragic, dependent creatures who were ‘burdensome’” for society. As disabled people – disabled by society – our oppression had historically been maintained by ‘charity’ which was used to remove people with impairments from the ‘public gaze’ and ‘look after them’. Disabled people’s history does contain accounts of protests by specific groups about their living or working conditions, the benefits system or service provision, but Block Telephon was the first direct political intervention into the mainstream and against pillars of our oppression.

Brenda, my partner at the time, Dominic our six year old, and Lucy who was a friend’s daughter, travelled down in my car from Birmingham to London. Lucy was a young teenager and came to assist Brenda with Dominic. Our friendship with Alan Holdsworth and Barbara Lisicki meant that we were aware from the beginning about the protest and we mobilized other members of the Birmingham Disability Rights Group to attend along with the group’s banner. There are photos of the banner and me sporting a flat cap. It was a bright summer’s day, the journey down was fairly uneventful, but as soon as we arrived near the ITV complex, the excitement began to mount.

As a fairly seasoned activist, I was used to participating in protests, but this particular protest was different on many levels. Many of the people there were taking part in their first encounter; the protest was not about injustice faced by ‘people out there, somewhere’, South Africa or Chile, but it was about “us” and it was personal as well as political. Another difference was that among the first-time protesters were leading figures from right across the Movement ranging from the disabled scholars through to actors, poets, and singers. With this eclectic mix of people being present, I found myself wandering around trying to see who I could spot and chat with.

On that day, a slow fuse was lit, people begun to arrive and mingle; in hushed voices people discussed the strategy. This was no ordinary protest, the mood was unlike anything I had experienced before; those who gathered had a collective sense of purpose, a conviction and determination. That day the ITV building was our Jericho and as people arrived in numbers, we started to line-up facing its walls, ready and willing to bring them down with voices that had been for too long, silenced and ignored. Along with Mark, a fellow worker with BDRG, I attached our banner to a fence beside other banners from organisations and campaign bodies. As far as I can remember, the day had distinct elements to it, although they all blur into one these days. I do recall disabled scholar activist, Mike Oliver, addressing us and listening to speeches then songs from Mike Higgins and Alan Holdsworth aka Jonny Crescendo.
Another memory I have is lining up along the road opposite ITV and chanting slogans such as: “Rights not Charity” and “Piss on Pity”. During this activity, a slick black limo emerged from the building and as it got level with me and the other protesters, the back side window was lowered to enable a well-known actor from EastEnders to look me straight in the eyes and yell: “Why don’t you just **** off!” Yes, a very charitable act indeed. We were also buoyed at this time by whispers that a small number of us had managed to get inside and were disrupting proceedings.

One remaining powerful image I have is of hundreds of disabled people marching with their allies to the entrance. At the end of the march there was the first really significant symbolic piece of direct action performed by disabled people; an attempt to storm the building. This action almost caught the police and security off guard, but they quickly threw a cordon around the entrances. Despite some pushing and shoving, the gesture was done peacefully. I still have a few personal photographs of this incident.

Returning to the question of the distance between then and now; with the fading memories, I take comfort from seeing the photographs and TV footage still available. In my gaze however there is, along with pride, a deep sense of loss too; a loss not only of the Movement with its energy, but also in relation to those individuals who made up our Movement and who are sadly no longer among us.
Bob Williams-Findlay 18/09/20

What follows is an elaboration of a presentation I delivered at a webinar held by Reclaim Social Care on the 20^th August 2020. [1] The central difference between the two revolves around this blog offering greater context and reference to relevant sources. The core argument has not been altered.

Introduction

There is broad agreement that a crisis within what is known as Social Care exists but there are vast differences of opinion in terms of its causes and what is required to bring the crisis to an end. The Covid-19 pandemic and the government’s inaction to protect those at most risk brought home to the wider public the fragility of existing provision. In response, and recognising the need to seize the moment, an array of proposals have emerged that seek to in some manner address the crisis.

Considering many of positions put forward, I identified similarities and differences between them, along with pronounced tensions and contradictions. We are not all on the same page nor are we seeking identical solutions. There are many reasons why this is the case however in the time I have, I can only flag up some of the issues that exist and offer thoughts on how to navigate these difficult waters. I am conscious of the old saying: united we stand, divided we fall, but if we are unable to square the circle, what can we do?

Why Care? Revealing the tensions

The first tension is the notion of ‘Social Care’ itself; is there a shared understanding of what it is? What does ‘social’ cover as opposed to health or personal ‘care’? Then there is that word: ‘Care’ and the webinar heard from Bryony Shannon who addressed how care and other words reinforce stereotyping of older and disabled people. In her blogs she has stated:

Much of what makes me go hmmm about the term ‘care’ is encapsulated in the Department of Health and Social Care’s latest campaign to recruit more people to work in adult social care.

The campaign is called ‘Care for others. Make a difference’.

Let’s break that down.

‘Care for’ suggests ‘do to’. Look after. Protect. There’s no sense of any kind of reciprocity, or relationship, or choice. Care is a paternalistic one-way street. It’s provided and received.

‘Care for others’ perpetuates the ‘us and them’ narrative. The carers, and the anonymous, homogenous ‘cared for’. The helpless who must be helped. ‘Service users’. ‘Residents’. “Inmates’. The separate, different others. Not even acknowledged as people by our Secretary of State for Health and Social Care, just “the most vulnerable in our society”. “Our most vulnerable”. [2]

A little later she writes:

But the narrative of care is about them. Others. ‘The vulnerable’ who need to be cared for, in another setting. In another sector. A bureaucratic system, where decisions are made for and about ‘service users’, not by or with people.

The focus on care invariably concentrates on ‘personal care’: managing and maintaining nutrition, personal hygiene, toileting needs – and too often this becomes the focus of care plans. The life and limb care to ensure survival.

It also perpetuates the medical model – focusing on what’s wrong, grouping and labelling people by diagnosis and condition, prescribing solutions and looking after people in institutions. A narrative that convinces many that the answer to the ‘care crisis’ lies in further integration with health.

There is still a stereotyped perception that ‘Social Care’ is simply about ‘looking after older people’ which means other groups in need of ‘social support’ are either ignored or subjected to inappropriate services. Much of what Bryony wrote in her blog fits with my own stance. The word ‘Care’ is often associated with ‘protecting someone or something and providing the things that that person or thing needs’. [3] There is nothing inherently wrong with that, however in both her webinar presentation and her book, “NO LIMITS – THE DISABLED PEOPLE’S MOVEMENT”,  Judy Hunt backs up the points made by Bryony with reference to disabled people’s emancipatory struggle for social support. Judy wrote about the 1970s where:

Many people hoped the [Chronically Sick and Disabled Persons] Act would mark the removal of barriers and the start of progress towards a more integrated society. They were disappointed. For while there were some gains in terms of promoting community services …. It also furthered more segregated institutional provision …. there was an expansion of “special” segregated services to provide education, employment, transport, housing, and day centre facilities.

Crucially, however, Judy goes on to say:

Disabled people now found that, in setting up the services, professionals assumed rather than enquired about what help people wanted, determined rather than consulted about what services would be provided, and they, as disabled people, were expected to be passive in their acceptance of what was on offer. [4]

This in part helps to reveal how the narrative of care came about and its implications for today’s society, but in truth we need to look back to the Poor Laws where through the historical division of those deemed ‘fit for work’ and those cast as ‘Other’, society created, ‘them’ a process that set people apart.

Teppo Kroger writes:

Due to their aversion to care, disability scholars have developed alternative concepts. Tom Shakespeare (2000) talks about help, referring primarily to reciprocal relationships among peer groups where help is provided on a mutual basis. Vic Finkelstein (1998) and several other disability activists use the term support when speaking about the needs of disabled people. Assistance is another concept, used widely in current disability studies, particularly in connection to the work of personal assistants. [5]

I have taken this quotation from an article entitled, Care Research and Disability Studies: Nothing in Common? Due to the length of time I had to present, I was unable to explore the academic, theoretical and policy orientated differences that surround various notions of ‘care’. In the abstract to the article, Teppo Kroger explains that:

Disability researchers have voiced the criticism that the concept of care, together with research based on it, consists of the view that disabled people are dependent non-autonomous second-class citizens. The perspectives of disability studies and care research certainly are different from each other. Disability studies analyse the oppression and exclusion of disabled people and emphases that disabled people need human rights and control over their own lives. Care research focuses rather on care relationships, informal and formal care, care-giving work and ‘an ethics of care’. Nevertheless, it is suggested here that the two perspectives are not mutually exclusive and that the two groups could learn from each other’s approaches. For example, the relationship between disabled people and their personal assistants has much the same characteristics as the care relationship and requires a balancing of the needs and interests of the two parties. On the other hand, access to adequate care could be perceived as a basic civil and human rights. [6]

The idea that ‘the two perspectives are not mutually exclusive and that the two groups could learn from each other’s approaches’ is in my opinion worth exploring because I believe there are complex power issues that have not been adequately addressed within existing models of ‘supporter-supported’ relationships. I will return to this shortly, but before I do, I want to emphasise further the key problematic area disabled people see with the dominant ideology and practice around ‘care’. Teppo Kroger refers to Jenny Morris who stated:

Care – in the second half of the twentieth century – has become to mean not caring about someone but caring for in the sense of taking responsibility for. People who are said to need caring for are assumed to be unable to exert choice and control. One cannot, therefore, have care and empowerment, for it is the ideology and the practice of caring which has led to the perception of disabled people as powerless. [7]

Teppo Kroger then argues:

Jenny Morris and many other disability researchers have rejected the concept of care, claiming that the notion carries an understanding of disabled (and older) people as passive and dependent recipients and that this kind of perspective makes it impossible to really comprehend and promote empowerment and an independent life. Disability studies, based on the social model of disability, have to a large extent abandoned the concepts of care, caring, family care-giving, informal care and formal care. [8]

I believe these concepts have been challenged by both researchers and activists, however, addressing how and why they have, needs contextualising because without doing so, the majority of society would fail to comprehend what lies behind the challenges. The subjection to powerlessness, the creation of invisibility and the fostering of dependency are all factors at play. Perhaps this point can be best illustrated by the present situation where, due to Covid-19, the majority of people who are recipients of Adult Social Care have found themselves subjected to ‘the most vulnerable’ (sic) label. Bryony in one of her blogs wrote:

The vulnerable label tends to be used interchangeably with other objectifying labels like ‘the elderly’, ‘the disabled’, ‘the homeless’. It’s stuck on individuals (he was very vulnerable, she’s highly vulnerable), applied to groups (vulnerable people, vulnerable children, vulnerable adults) and combined with other labels (vulnerable service user, vulnerable customer, vulnerable case). Often there’s no context – no indication of what it is that the individual or group of people are vulnerable to. And increasingly it’s not obvious that we’re referring to people at all. [9]

It is vital to acknowledge different perspectives among service users; hence, I quote:

…the words ‘care’ and ‘carer’ are regarded by the disabled people’s movement as paternalistic and dependency creating when used with reference to disabled people. Social ‘support’ is currently considered the more appropriate phrase for disability related services. Adult disabled people require …. ‘support workers’ or ‘personal assistants’. [10]

Many of the ideological and material factors that created and maintained disabled people’s social exclusion and marginal status were subjected to scrutiny by the early Disabled People’s Movement and were the foundation stones for their emancipation struggles. The core aim in those days was to fight to be free from institutionalised living, segregation, and disempowerment.

Disabled people’s emancipatory struggle for social support

Disabled people in the USA, then the UK and across the globe coined the term Independent living. It is seen by its advocates as being both a philosophy and a set of practices which offer a way of looking at society and disability. The word, ‘independent’ here does not refer to being ‘self-reliant’ or rehabilitated to ‘live independently’, but rather to making decisions regarding one’s own preferences and lifestyles. John Evans, a founder of Independent Living in the UK, explains that it is ‘… the ability to decide and choose what a person wants, where to live and how, what to do, and how to set about doing it. These goals and decisions about a person’s life and the freedom to participate fully in the community have been and will continue to be the essence of what Independent Living is. It is also the taking and establishment of self-control and self–determination in the total management of a person’s everyday life and affairs. It is about ensuring that all disabled people have the equality of opportunity in the chances and choices of life like everybody else.’ [Emphasis added – BWF] [11]

The picture John paints is a broad one, based upon Independent Living’s philosophy and principles, but it has been open to misinterpretation. It is a given that impairment reality means some groups of people are not in a position to exercise the total management of their everyday life, but this does not mean they have to be denied support in making decisions. Independent Living is a holistic approach which centres upon people’s own lifestyles. Within Independent Living, anyone facing social restrictions encountered by societal responses towards age, impairment, or chronic illness, are viewed as ‘disabled’ people. Independent Living remains largely unknown, underdeveloped, and often distorted. It has its critics; and there are grounds for concern because like other radical concepts coming from the Disabled People’s movement, it has been hi-jacked by Neoliberal and more rightward thinking policy makers and activists. New Labour saw Independent Living as ‘personalisation’ and shaped it to fit a marketized ‘social care’ agenda. Similarly, the radical framing of ‘direct payments’ or ‘personal budgets’ offered by disabled people were subjected to commodification and slotted eventually into the Austerity onslaught.

Here we have a massive contradiction that many disabled people readily acknowledge. Whilst these alternative concepts emanating from the our movement sought to transform ‘care’ by shifting the power and freeing people from the rigidity of the system which ‘objectified’ service users through ‘need assessments’, etc. it resulted in creating other negative dynamics which have proved detrimental due to the fact that living independently now required operating within the social care market place. Reclaiming Our Futures Alliance’s vision for a new service seeks to find a way of taking disabled people out from being trapped between a rock and a hard place – the old fashioned paternalistic social democratic welfare state methods of service delivery, on the one hand, and the neoliberal marketisation of service provision, on the other.

Jenny Morris and others have spoken about how concepts from the Disabled People’s Movement have been stripped of their radical meanings and been subjected to interpretations that protect, promote, or reinforce status quo ideas and practice. I have written about this in connection with the ‘Personalisation’ agenda. [12 ] There are also tensions and contradictions surrounding the thinking and practices behind both ‘Direct Payments’ and ‘Personal Budgets’ and these have divided opinion among disabled people and nondisabled people alike. [13]

Teppo Kroger informed us that:

Nick Watson et al. (2004) have commented that these alternative conceptualisations aim to transform care, based on an unequal relationship and including an emotional dimension, into a less personal, contractual relationship.

From the employer position relative to a personal assistant, the disabled person is said to acquire power over her/his own life and become ‘protected from the pejorative, symbolic and practical elements of caring relationships. [14]

Whilst this may have been the intention, the operational nature of these concepts in the era of Neoliberalism, has unleashed a series of unforeseen dynamics. Peter Beresford wrote:

Since 2007, the study found councils have significantly increased staffing levels to administer this, while the volume of support delivered has reduced. The loss of productivity is as much as 20%, costing in the region of £400m a year, which can be added to the £500m spent on introducing this system.

But all need not be lost. If the government faces up to the failure of this strategy, it can set a new direction that will work. The RAS [resource allocation system], in all its forms, should be dropped, along with the consumerist philosophy that underpins the strategy. Most older and disabled people need to work with an infrastructure of advice, advocacy and administrative back-up to achieve the best approach to their support. The government must create the environment within which this can happen. While it is possible to pursue personalisation within existing resources, the government must accept that achieving the best outcomes requires people to have the level of resource that is right for them. [15]

In the same article, Julie Stansfield argued:

Personal budgets are just a mechanism; the principles of self-directed support are the critical thing. But this is also where the real problem lies. Our advice line is inundated with people telling us these principles don’t apply where they live. It is in these places we find the over-complex resource allocation systems; burdensome support planning approaches; rigid rules on spend; social workers not trusted to make judgments; people left without information, advice and advocacy. We share the concerns about too much process and bureaucracy, and we are afraid that the situation is getting worse. But these problems don’t result from the model of self-directed support itself, but from difficulties public services have in transferring power to their users. We need to make common cause and fight together for personal budgets that truly shift power to people. [16]

This why I fully support ROFA’s radical vision for a new National Independent Living Support Service. [17] Unfortunately, there are many forces who are genuinely concerned about the existing situation and what might lie ahead, but nevertheless seem unaware of or fail to recognised the trapped position disabled people find themselves in.

As previously pointed out, the pandemic and the government’s inaction brought greater awareness of the fragility of existing provision. We saw residents and staff treated like lambs to the slaughter; anger at the lack of safety equipment, pay and working conditions – all valid. What was less evident was consideration of the social and cultural environment that surrounds the proliferation of residential and nursing care settings, especially within the private sector. Surely, given what we have just witnessed, is there not a need to question whether or not these forms of institutionalized living are the solution to the numbers of people requiring supported living?  How can people talk about ‘Care’ without addressing the elephant in the room; namely, deinstitutionalisation. The European Network for Independent Living views this as a fundamental human right:

Deinstitutionalisation is a political and a social process providing the shift from institutional care and other isolating and segregating settings to independent living. Essential to the process is the provision of affordable and accessible housing in the community, access to public services, personal assistance, and peer support. It  is also about  ensuring that children are able to grow up with their families and alongside neighbours and friends in the community, instead of being segregated in institutional care. Where people live is a human right, we need ensure meaningful options are available. [18]

What these tensions and contradictions illustrate is that there are no quick fit solutions or ‘one-size-fits-all’ off the peg policies available. When planning this talk, I was  influenced by Rich Watts who wrote a SCIE [Social Care Institute for Excellence]  opinion piece in 2015. He said:

Our concept of social care as a cohesive ‘system’ can compromise our ability to understand how complex it really is. I think that the need to change social care, to meet all future demands, requires us to think in a much more sophisticated way.

His starting point, however, will possibly raise eyebrows – we should question ….whether social care is even a ‘system’ at all. The formal definition of a system includes ideas like having a fixed structure with a range of defined parts. I also believe he is correct to assert that:

This way of thinking has its attractions, not least of all to politicians, because it suggests that if only the right levers can be pulled, then the right sorts of changes will happen. But to me, social care feels like it’s too mechanistic. [19] Watts then proceeds to suggests that perhaps a better way of thinking about this is to recognise the complexity of what we might call the ‘social care ecosystem’. What does this mean? Well, an ecosystem is a biological community of interacting organisms and their physical environment. To my way of thinking this is exactly how we should be conceptualising the landscape; however, wait a minute, is this not the basis for Independent Living?

If we were to embrace the idea of an ecosystem of community based provision, then one of the essential tasks we have in the coming weeks, months and years ahead is to create spaces where the right mix of people, organisations, power, expertise, experience, styles, and cultures can be brought together. As SCIE would inform us, this is called, co-production.

Notes

[1] Reclaim Social Care

https://www.facebook.com/groups/ReclaimSocialCare

[2] Bryony Shannon

https://rewritingsocialcare.blog/2020/05/31/care/?fbclid=IwAR31MT73Ko-L9zRlEAjdqkjfeBJzh9jrY_DkSeXfpozW2PEB0g3Cyx-2xRU

Bryony’s references:

Adult social care recruitment care campaign launched to boost workforce, Department of Health and Social Care, 23 April 2020

Care home boss says hospitals are refusing to admit her inmates showing symptoms, Robert Preston, Twitter, 5 April 2020

Adult social care recruitment care campaign launched to boost workforce, Department of Health and Social Care, 23 April 2020

[3] Care – Definition

https://dictionary.cambridge.org/dictionary/english/care

[4] Hunt, J. (2020) NO LIMITS – THE DISABLED PEOPLE’S MOVEMENT, TBR Imprint p.74

[5] Kröger, T. (2009). Care research and disability studies: Nothing in common? Critical Social Policy – CRIT SOC POLICY. 29. 398-420. 10.1177/0261018309105177.

Kröger’s references

Shakespeare, T. (2000) Help. Venture Press: Birmingham

Finkelstein, V. (1998) ‘Re-thinking Care in a Society Providing Equal Opportunities for All’,

Discussion Paper prepared for the World Health Organisation. Milton Keynes: Open University.

Watson, N., McKie, L., Hughes, B., Hopkins, D. and Gregory, S. (2004) ‘(Inter)dependence, Needs and Care: The Potential for Disability and Feminist Theorists to Develop an Emancipatory Model’, Sociology 38(2): 331–50

[6] Kröger

[7] Morris, J.  (1997) Care of Empowerment? A Disability Rights Perspective

Social Policy & Administration, Volume 31 (1) – Mar 1, 1997

[8] Kröger

[9] Bryony Shannon

https://rewritingsocialcare.blog/2020/07/24/vulnerable/

[10] Kröger

[11] Evans, J. (President of European Network of Independent Living) (2003)

Disabled People in Europe are Demanding the Right to Independent Living

Presentation at Paris Disability Expo

[12] Williams-Findlay, B. (2015) ‘Personalisation and self-determination:

the same difference?’, Critical and Radical Social Work, Volume 3 (1) p. 67 – 87, Policy Press

[13] Direct payments, personal budgets and individual budgets

Direct payments, personal budgets and individual budgets

Direct Payments: Are they working well for people with learning disabilities or dementia who lack mental capacity to consent?

https://www.nationalelfservice.net/social-care/personal-budgets-and-direct-payments/direct-payments-are-they-working-well-for-people-with-learning-disabilities-or-dementia-who-lack-mental-capacity-to-consent/

[14] Kröger

[15] Slasberg, C., Beresford, P.,  and Schofield, P. (2012) How selfdirected support is failing to deliver personal budgets and personalisation

Click to access Slasberg-et-al.pdf

[16] Beresford, P. and Stansfield, J. (2013) Are social care personal budgets working?

https://www.theguardian.com/society/2013/feb/12/are-social-care-personal-budgets-working

[17] Independent Living for the Future

Independent Living for the Future

[18] European Network for Independent Living  – Definitions

Definitions

[19] Watts, R. (2015) Why social care is like a Jackson Pollock painting

SCIE opinion

https://www.scie.org.uk/opinion/why-social-care-is-like-a-jackson-pollock-painting.asp?fbclid=IwAR1Cd1DIlGkDkzZoB6rRy13U9Sz9BMCcG1FOAdTzVnyEHCJlhZxzI0WRKlw

Introduction

It is perhaps paradoxical that just at the moment Disabled people* were launching a new social movement, capitalism was about to enter a new socio-economic phase known as Neoliberalism. In Britain we witnessed the rise of Thatcherism which begun the assault on the welfare state; but it was New Labour that did for the social movement I refer to as the Disabled People’s Movement. The Age of Austerity introduced by the Coalition government in 2010 saw pockets of resistance emerge among d/Disabled people*, however, to what extent the politics of disability mirror the disability politics of the 1970s and 80s, is questionable. There are people, including me, who see a contradiction: while on the one hand radical disability politics have been lost, on the other, the landscape of disablism as also changed. Given this situation, we believe there is need for a fresh appraisal of disabled people’s social oppression however this is going to be difficult to achieve without either a social movement or an understanding of a collective political identity. Many existing Disabled activists mourn the loss of both community and culture. In their place they see narcissistic individualism and divisive forms of ‘identity politics’. In this piece I want to explore disability politics in relation to building communities. Disabled people often talk about a ‘disabled community’ but it is not always clear to what this refers or even if it is viable to do so. There are others who argue that it is more accurate to speak of ‘disabled communities’ because they are formed for a variety of reasons and are constituted in different ways. In this piece, I will consider the nature of the coming together of disabled people by touching upon disability politics and culture, a collective identity, the Disabled People’s Movement, language as well as various concepts.

Let us begin our exploration of what ‘disabled communities’ are or might be by considering what we mean by ‘community’, and our understanding of what is understood within specific contexts, to be ‘disabled’.  There are two definitions of ‘community’ that will be employed; sometimes separate from each other, but at other times in a combined manner. These definitions are:

• a group of people livig in the same place or having a particular characteristic in common

and:

• the condition of sharing or having certain attitudes and interests in common (1)

The key feature in both definitions is the idea of commonality. We will return to these definitions in due course and the question of what disabled people have or have not got in common. First, of course, we need to try and identify who it is that we are speaking of as this is complicated. Mike Oliver spoke about the need for an individual to self-define themselves as a Disabled person* and he identified three elements within this process. For Oliver, disabled people are defined in terms of three criteria:

(i)   they have an impairment

(ii)  they experience oppression as a consequence; and

(iii) they identify themselves as a disabled person.

In addition he wrote:

Using the generic term [disabled people] does not mean that I do not recognise differences in experience within the group but that in exploring this we should start from the ways oppression differentially impacts on different groups of people rather than with differences in experience among individuals with different impairments. (2).

We will consider how oppression differentially impacts on different groups of people in due course, but before we do, it is necessary to acknowledge that, in terms of having some form of socio-political awareness, self-identity as a Disabled person is an important element. The problem is that for the majority of disabled people / people with impairments this ‘identity’ is not the first one they encounter. For the vast majority of people with impairments, irrespective of when they acquire the impairment, their first encounter with ‘disabled identities’ tends to be through interaction with members of medical professions and therefore they are externally imposed as part of any assessment. It is vital from the beginning to recognise that more than a single ‘disabled identity’ exists. Here we are confronting the fact that there is often an intersection between the personal and the public recognition of someone being classed as ‘disabled’ (sic). It could be argued that this is where disablement enters an individual’s life. Oliver and Barnes inform us that disablement:

…. refers to the economic and social processes that ultimately create both impairment and disability. It is of course mediated by personal experiences of impairment and influenced by the politics of disability as well as societal responses to the ‘problem’. (Emphasis added – BWF) (3)

How individuals address the contested areas of personal experience, societal responses and the politics of disability varies greatly. People who acquire an impairment, for example in later life, are more likely to deny or reject an identity of ‘Disabled person’ because they both accept, and reject at the same time, the oppressive meanings attached to seeing ‘disability as a personal tragedy’. (4) Other people, for example, members of the Deaf community completely reject seeing themselves as either ‘impaired’ or ‘disabled’, but nevertheless “play-the-game” by using legal entitlements to claim Personal Independence Payment or Access to Work. I am not addressing Deaf people in this piece.

Then of course there are people with impairments who seek to ‘pass as normal’, (sic) thus rejecting any ‘disabled identities’ How these people see themselves however may not match up with the ‘public gaze’ that falls upon them. The exact opposite may also occur where people with impairments may accept a number of ‘disabled identities’ only to discover that these self-perceptions come to be denied by the ‘public gaze’ or through definitions used by the State. Finally, I would argue that it is possible to have situations where imposed ‘disabled identities’ are not static, and as a result, people can slip in and out of having ‘disabled identities’ depending upon the social situations they find themselves in. Often the person with the impairment has no control over or involvement with the processes they are subjected to. Taken as a whole, this complexity, makes it extremely difficult to identify the boundaries around what constitutes the ‘disabled community’ or should that be ‘disabled communities’? Given this situation, it becomes equally difficult to determine which individuals are identified as being included or excluded from defined ‘disabled communities’. Why does it matter? I would argue that it matters for a number of reasons relating disabled people’s experience of social oppression in general and, more specifically, in relation to their ability to mount a meaningful resistance to the current attacks upon their lives. How do we engage with others who are subjected to both disablement and disablism? (5)

Disabled communities and encountered social oppression

What needs to be asked at this particular moment in time is: what are the key factors for Disabled activists employing a social oppression approach to consider? The first thing that is required is clarity in relation to our understanding of social oppression because all too often it is viewed simply as being another term for discrimination. Paul Abberley, in my opinion, offered a helpful materialist approach towards understanding social oppression. He argued:

…. to usefully apply the notion of oppression to the complex of impairment, [functionality and social restriction] involves the development of a theory which connects together the common features of economic, social and psychological disadvantage with an understanding of the material basis of these disadvantages and the ideologies which propagate and reproduce them. Only such an account, specific and systematic, can move discussion beyond the level that it has reached so far…. (6)

I would argue the social model developed by Oliver, partly addressed this, but underplayed the nature of disabled people’s social oppression due to the lack of clarity as previously mentioned. What we need to acknowledge is that:

• Disablement is about the social exclusion and marginalisation of people with impairments within mainstream social activities

• Disability as a form of social oppression means people with impairments’ lives are often determined by an army of professionals and/or policy makers rather than being self-determined by them
• People with impairments’ experiences are extnally socially constructed as being ‘individualised problems’, therefore they are denied a collective identity that acknowledges the actual commonality of social experiences within and between specific groups of people with impairments
• The experience of social oppression transform people with impairments into disabled people
• Disabled people are a social oppressed group because the management of society’s structures, systems, cultures, and values which lead to their absence from decision making processes, socio-economic participation, consideration in terms of their lifestyles, and as a consequence, leaves them both powerless and voiceless

The political identity of being Disabled people – that is, the forging a collective identity through the identification of people with impairments’ “social situation” i.e. being disabled by society, is often lost because this particular meaning remains unknown to many, or because there is an ambiguity contained within the words. We cannot ignore the fact the term ‘disabled people’ is used in mainstream society to define “the disabled” (sic) in a more ‘politically correct’ manner. The notion of ‘disabled community/communities’ is therefore subject to ambiguity as well. Many people with impairments have argued they are part of the ‘disabled community’ but are not represented by the politics that informed the Disabled People’s Movement. In this paper, I speak about ‘Disabled People’s Movement’; many of the older scholar activists such as Vic Finkelstein and Mike Oliver used the term, ‘Disability Movement’. In terms of disability politics talking of the Disability Movement would be logical as I will demonstrate later, but to add a further complication, the 2000s saw the term hijacked by the disability charities.

How should we attempt to address the problem of ambiguity and conflicting meanings? I have elected to use a number of specific terms within the context of this blog to make a number of distinctions within what I call ‘the politics of disability’. Oliver and Zarb wrote in a paper for Disability and Society that:

…. the politics of disability has, so far, been narrowly conceived as part of the processes of party and pressure group activity. These approaches …. it will be suggested that they are unlikely to produce substantial political gains in terms of ensuring the full participation of disabled people in society or contribute significantly to improving the quality of their lives. Finally, it will be argued that the politics of disability can only be properly understood as part of the newly emergent social movements of all kinds and it is only within this context that their real significance can be grasped. (7)

The distinction between ‘the processes of party and pressure goup activity’ and the politics that were coming from ‘newly emergent social movements of all kinds’, was a valid one to make. The paternalism of the Labour Party, and the single issue pressure group politics of the Disablement Income Group, and the Disability Alliance, were counterposed by Disabled people’s organisations such as the Union of Physically Impaired Against Segregation (UPIAS) and the British Council of Organisations of Disabled People (BCODP) during the 1970s and 1980s. Key to the political differences was the development of the social model of disability and growth of Disabled people’s organisations. The emergence of the Disabled People’s Movement was an important development in forging new disability politics and the radical collective identity of Disabled people, but we must be honest and recognise that only a fragment of the population who had impairments were exposed to these politics. I also fully accept the view expressed by Campbell and Oliver that because the Disabled People’s Movement was a social movement and not a political organisation with a fixed agenda, it contained forces that had both revolutionary and reformist aspirations. (8)

Elsewhere I have traced the history of the Disabled People’s Movement and explained how the landscape has changed over the last twenty years as the self-organisation of Disabled people and awareness of disability politics has declined. The radicalism of the original social model of disability is rarely visible these days. (9) In their book, Oliver and Barnes, make a fresh distinction between the Disabled People’s Movement and the new hybrid alliance between some disability charities and some market facing disabled people’s organisations they refer to as the Disability Movement. (10) I have characterised the Disability Movement has having what I called, Janus politics; this is because they look back to the concepts of the old Disabled People’s Movement, but empty them of their original radical meanings and replace them with reformist ideas that sit comfortably with Neoliberal self-reliance and individualism. (11) As a result of the rise of the Disability Movement, I would make a sharp distinction between the broad ‘politics of disability’ that exist within society and disability politics which I see as the praxis coming from the historical materialists approach to defining disability. (12)

In my opinion there are now very few Disabled people or disabled people’s organisations who maintain disability politics similar to those in the 1980s. I would also suggest therefore that there is only a rump of the old Disabled People’s Movement still in existence and that we need to note here that there can be organisations of disabled people who straddle the politics of both the newer Disability Movement and the old Disabled People’s Movement. It is necessary at the same time to accept that within the Disability Movement there are disabled people who want ‘rights’ and oppose the ‘cuts to services’, but nevertheless hold views which correspond to the ‘individual tragedy’ approach towards disability.  The Disability Movement is not a social movement and has not been that active since the ‘Hardest Hit’ campaign. (13)

This diversity of opinion among disabled people cannot be ignored or pushed to one side. As a result of living disabled lives in the age of austerity, the political terrain within ‘disabled communities’ has changed. The term ‘disabled activist’, I would argue has a far wider meaning to what it did have twenty or forty years ago. The spectrum of the ‘politics of disability’ within campaigning is evident with bloggers discussing their own personal angst caused by benefit reforms for example. In the past the Disabled People’s Movement tended to share to a certain extent a common language and approach towards seeing disabled people and their issues; today, I would suggest the language and politics involved is far more fractured. This situation has result in some tensions existing among, for example, Disabled People Against Cuts where there is not always a clear understanding of disability politics within its membership. (14) The Disabled People’s Movement had always had to deal with questions around ‘who does it actually represent’ and with what ‘authority’ did it speak. By speaking of itself as an emerging social movement enabled the Disabled People’s Movement to cut itself so slack; but the climate has changed, the immediate needs of disabled people are the focus; talking about ‘rights’ and ‘inclusion’ no longer seem the priority upon the agenda, yet that is often the language we hear the most.

Under these conditions, those disabled activists who believe only a rump of the old Disabled People’s Movement exists, are having to face up to the prospect of having to create out of the ashes that remain, a new resistance movement. In order to do this they must develop an understanding of who it is they are working on behalf of and who they intend to work with. If there is an emerging new politically based social movement coming out of the struggles against the Government’s austerity measures, then I believe sooner or later it will have to ask itself:

Are we seeking to represent existing disabled communities or are we in actual fact articulating the political expressions of certain voices among disabled people from these communities?

I would argue disability politics is about defending the interests of members of disabled communities in relation to the experience of social oppression; even though some groups and individuals may have conflicting interests or reject these politics altogether. I have long held the view that it was a political error to assume that the social model could always discussed or used without reference to the individual tragedy model; in my opinion, it stunted the political education of disabled people and contributed to people’s confusion regarding the breaking of the causal link between impairment reality and disability. We will consider the implications behind this when discussing diverse communities.

As I have already indicated, disabled people are not part of a homogenous group; some people with impairments may belong to the upper layers of the class system and have the financial means to blunt the impact of disability and/or they may hold political views which distance themselves from other disabled people and their communities. (15)  This said, I also believe social movements represent specific groups and therefore accept the view that the old Disabled People’s Movement did not represent all of the ‘disabled community’(sic) in terms of political expression. Recognising both of these facts, I would prefer to use the term disabled communities to include any people with impairments who are defined as “disabled” via all of the definitions employed within British society; and as a consequence, this would include:

• any people with impairments who accept the label of “disabled” as defined by dominant ideologies and practice – either by choice or as a result of not being exposed to any alternative view of disability
• any peope with impairments who reject the label of “disabled” as defined by dominant ideologies and practice but either by choice or as a result of not being exposed to any alternative view of disability refuse to see themselves as ‘disabled’
• any people with impairments who may view disability as a political issue but do not necessarily embrace disability politics; and
• any people with impairments who embrace disability politics

Seeing people with impairments in this way raises all kinds of difficult questions. I believe it is necessary to do so, not only to avoid abandoning many of them, but also to acknowledge the need to find appropriate ways of trying to engage with them. Not all of these people with impairments, of course, fit into Oliver’s criteria of self-definition of being a ‘disabled person’. My decision to use the term disabled communities is a political one. Let me explain why I consider this to be important. When the time comes to attempt to forge a new social movement led by Disabled people, I believe it will be crucial to acknowledge, as I have already stated, disabled communities are not homogeneous for a variety of factors. The social and political diversity of these disabled communities were never adequately addressed by the Disabled People’s Movement in my opinion. Given the last decade where the Coalition Government began the process of attempting to re-define who is and who isn’t a ‘disabled person’, I believe it is time, more than ever, for d/Disabled activists to have a clearer picture of our relationship with others within these disabled communities. I believe, using the two definitions of community outlined earlier, it is possible to say that particular disabled communities do exist and have existed for a considerable length of time, however what relations they have or had with disability politics is extremely difficult to determine. There are many d/Disabled activists who believe we have lost a sense of community. To what extent this relates to the demise of the Disabled People’s Movement is something I believe needs exploring.

Up until now I have referred to the Disabled People’s Movement as a social movement, but what does this mean in concrete terms?

The Disabled People’s Movement: was it a social movement?

A simplistic definition of a social movement is a ‘loosely organized but sustained campaign in support of a social goal, typically either the implementation or the prevention of a change in society’s structure or values.’ A more academic definition comes from Sidney Tarrow who defines a social movement as ‘collective challenges (to elites, authorities, other groups or cultural codes) by people with common purposes and solidarity in sustained interactions with elites, opponents and authorities.’ (16) He specifically distinguishes social movements from political parties and advocacy groups. Taken together there’s little doubt that in sociological terms – the Disabled People’s Movement fits the definition. How important is this? I would suggest understanding the Disabled People’s Movement as a social movement helps us analyse its strengths and weaknesses; enabling us to decide what to maintain and what to change if a new movement is to emerge.

Oliver argued the Disabled People’s Movement was a social movement because:

• it was peripheral to conventional politics
• offered a critical evaluation of society
• embraced ‘post-materialist’ or ‘post-acquistive’ values
• had an internationalist perspective

What underpinned the disability politics of the Disabled People’s Movement was:

a) an emphasis on self-organisation                                                                                           b) a commitment to radical political action to promote change                                           c) to improve the quality of disabled people’s lives and promote their full inclusion into society

He stated recently that a ‘…key feature of the disabled people’s movement has been its focus on social exclusion and oppression.’ (17) I doubt many disabled activists would disagree with this broad picture, although some like myself might suggest that over the life of the Movement there were elements that moved away from these politics or have subjected them to ‘re-interpretation’. Similarly, there were and still are Disabled people who question the feasibility of gaining ‘full inclusion into society’ given the nature of it.

Where I believe a major schism in disability politics emerged can be traced to the idea that the Movement:

‘… argues that the barriers to disabled people’s inclusion are embedded in policies and practices based on the individualistic and medical approaches to disability.’

Nothing new there, this is accepting Oliver’s models, however they go on to write:

The removal of these obstacles involves gaining control over material resources and the range and quality of services. Previously we suggested the aim of the movement was to be ‘consciously engaged in critical evaluation of capitalist society and in the creation of alternative models of social organisation … as well as trying to reconstruct the world ideologically and to create alternative forms of service provision.’ (18)

I make no apologies for going into detail over this point because to me it is central to an analysis of where the Disabled People’s Movement divided and sections abandoned disability politics altogether. When we consider the political task of challenging disabling barriers it is necessary to recognise the role played by d/Disabled people who called for civil and human rights. I would argue this call should have been viewed as a means to an end rather than an end in itself. By shifting the focus entirely on “Rights” the Movement, I would argue, lost sight of the bigger picture which halted any critical evaluation of capitalist society. As a result, the ‘leadership’ through BCODP and Rights Now, tied the Movement to a reformist agenda which centred primarily upon “Rights” as the key to unlocking the disabling barriers at the micro level of society. The disabling barriers at a macro level – the structures and systems of capitalist society itself were as a consequence played down. Suddenly ‘inclusive practices’ could remove disabling barriers and address disablism.

An important turning point in my opinion was the establishment of New Labour’s Task Force and the willingness of the centre-right, at the exclusion of the left, to work with New Labour. From 1996 onwards BCODP and later UKDPC and the National Centre for Independent Living began to ‘re-invent’ the Disabled People’s Movement as a ‘rights based movement’ and in the process left more radical disability politics behind. Where the left in the Movement saw the passing of the DDA as a defeat, the centre-right slowly but surely sought accommodation. The Movement began to lose sight of its aims and New Labour isolated large sections of it whilst incorporating others into the “revisionist agenda” that stole the language and concepts of the Disabled People’s Movement, but in the process emptied them of their radical meanings and replaced them with watered down versions as a make shift position until the Neoliberal ‘third way’ agenda for welfare reform kicked in. (19)

The significance of this is two-fold in my opinion. Firstly, it led to the Disabled People’s Movement becoming only a rump of its former self and, over time, it has lost sight of its original aims and methodological approach. What this means is it offers no leadership to disabled communities as it became trapped within a static time warp until it fizzled out. UKDPC, for example, employed the same language used in the 1990s but with little or no reference to the current struggles facing disabled people. The majority of Disabled activists therefore fall into two broad camps – a radical resistance current who still hold onto a disjointed political perspective hewn from disability politics – and a reformist current that is a hybrid of disability charities and DPOs who employ ‘fusion politics’ which is basically a mixture of the dominant approach to disability coated with a reformist bastardised social model of disability. These people offer no serious challenge to the Government or disablism.

Secondly, it seems highly questionable to speak about a Disabled People’s Movement under these conditions because the original aims have been “lost” or placed upon a back burner. Over the last decade there have been numerous calls from DPOs and activists to breathe new life into the Disabled People’s Movement but nothing concrete emerged as a result until Disabled People Against Cuts, Inclusion London and Alfie established Reclaiming Our Futures Alliance which remains small. (20)

What do we mean when we speak of disability rights?

The idea of reclaiming our futures is a good one, but it requires greater clarity. Understanding and building disabled communities will be an essential element of this process, but another crucial part of the exercise of ‘re-claiming’ the ground secured by the original Disabled People’s Movement, I believe, has to involve the task of distinguishing between the broad self-defined meaning given to ‘disability rights’ by Disabled activists and the more specific meaning associated with the struggle to obtain civil and human rights. The latter, I would argue, should be viewed as a legal set of demands. In my view the two are not synonymous. I spoke earlier about how a reformist perspective that existed within the Disabled People’s Movement re-interpreted the social model of disability as a ‘rights based approach’ and this needs challenging. In my opinion the attractiveness of this approach stems from how many disabled activists have come to articulate their understanding of what is meant by ‘disability rights’. In an online discussion around this subject, one disabled activist wrote:

For me rights should be at every level all aspects of life so that individuals can choose how to use them in their own lives with support of communities and structures. We just have to lobby to get them right or at least hold on to what we’re got these days. (21)

I want to suggest this articulation combines the desire to have, and to hold onto, civil and human rights, with the drive for what I would call self-determination. The term self-determination is more commonly associated with ‘nation states’ and ‘peoples’, but in more recently times it has been used to mean: ‘the free choice of one’s own acts without external compulsion’, which would fit into what the disabled activist was articulating. (22) It is this definition of self-determination I want to work with in relation to exploring what is meant by disability rights. The immediate issue I need to confront is the fact that this definition can be applied to both an individual and a collective of ‘peoples’. I want to leave to one side the issue of the individual’s right to self-determination and concentrate fully on the question of self-determination in a collective sense.

It has already been argued that within mainstream society the label ‘the disabled’ (sic) represents disabled people as a collection of individuals rather than as an identifiable social group. I have also stated that in my view the term ‘disabled communities’ includes any people with impairments who are defined as “disabled” via any definitions employed within British society. In sociological terms, ‘the disabled’ would be classed as a social category because they would be viewed as a collection of people who do not interact but who share similar characteristics. Similarly, ‘disabled communities’ might also be regarded as a social category to a degree, however, within these broad ‘communities’ there are groups and individuals who do interact with each other and share similar characteristics and a sense of unity and, therefore as a result, could be considered as constituting a social group. McLeod writing from a psychological perspective in relation to social roles states:

We do not expect people to behave randomly but to behave in certain ways in particular situations. Each social situation entails its own particular set of expectations about the “proper” way to behave. Such expectation can vary from group to group.

One way in which these expectations become apparent is when we look at the roles that people play in society. Social roles are the part people play as members of a social group. With each social role you adopt, your behaviour changes to fit the expectations both you and others have of that role. (Emphasis added – BWF) (23)

UPIAS was quite clear in its belief that what united disabled people was not the actual existence of impairments, but rather the oppressive social relations people experienced as a result of having impairments. (24) Finkelstein suggested that an understanding of the psychology of disability must start from the principle that ‘we make sense of our world according to the way we experience it’. He goes on to say:

If disabled people are denied access to normal social activities, we will not only have different experiences to that of our able-bodied peers but we will interpret the world differently; we will see it, think about it, have feelings about it and talk about it differently. The question is, however, ‘from what stand-point should this psychological experience be interpreted?’ (25)

He went on to argue that as most things are ‘made sense of’ through the lived experiences of non-disabled people, this means the development of an understanding of the psychology of disability has been prevented. Disabled people’s own interpretations of the world have been ignored, not allowed to developed or simply denied because they are regarded as subjective and therefore not valid. (26) How is this relevant to understanding what disability rights are? Much of the discussion in recent years around disability has centred upon what has been described as ‘disabling barriers’ experienced in terms of social activity and this, in turn, has been reduced to a question of discrimination. I want to put forward the idea that this had resulted in a series of unhealthy interpretations of UPIAS’ original thinking and as a result produced reformist ‘social approaches’ that conflate a number of different issues. Do disabling barriers and social restrictions mean identical things? Are people thinking incorrectly when they see social oppression as being another way of articulating discrimination? It is not my aim to play down the significance of discrimination in disabled people’s lives, but I would argue that the social oppression of disabled people is far more than being an experience of various forms of discrimination. I want to suggest disabled people’s experience of ‘unequal and differential treatment’ goes beyond encountering barriers or discriminatory practices; it includes the denial of their social worth and often results in invalidating their existing social roles within society. The majority of disabled people outside of socially constructed stereotypes are invisible. To my way of thinking this brings together a number of ‘sites of struggle’ in terms of overthrowing social oppression.

When I consider UPIAS’ original thinking, I focus upon the idea that ‘disability’ is a “social situation” which is imposed upon people with impairments by the ‘social arrangements’ found within society. Personally, I believe this could be misleading, unless we recognise that these ‘social arrangements’ include existing social relations. It follows therefore that the imposition of social restrictions, often experienced as disabling barriers, results in people with impairments facing ‘unequal and differential treatment’. Disablement produces this unequal and differential treatment however, it is disablism that maintains it. In addition, I believe the Disabled People’s Movement by distorting the social model’s usage with an emphasis on ‘removing disabling barriers’, underemphasised the structural nature of ‘being disabled by society’ – how disabled people are materially excluded from and marginalised within capitalist societies. Our social situation means that the manner of our oppression – made invisible, externally defined, often actively excluded and marginalised – assists in disables our ability to combat it. By seeing ‘disability’ as a “social situation”, I believe we can construct concepts and language that supports a social approach towards disability. This means using these concepts:

Disability = the imposition of social restrictions on top of impairment reality created from disablement.

Disablement = is the negative result of economic, political, and ideological influences on the structures, systems, values, culture, and practice of given societies as experienced by disabled people.

Disablism = the acceptance and promotion of ideas and practice associated with dominant ideologies that present ‘disability’ as the absence of normality, a state of inferiority and the cause of perceived lack of social worth found within an individual – e.g. a burden on society, lacking in capacity.

Social oppression = the historical development of ‘unequal and differential treatment’ of people with impairments which has led to their exclusion from or marginalisation within mainstream societal activities.

It would follow then logically, the Disability Movement [Disabled People’s Movement] = a social movement in opposition to disablism and disablement.

I find it useful to employ the notion of ‘juxtaposition’ which is when two contrasting objects, images, or ideas are placed together or described together in order that the differences between them can be emphasised. Seeing disability as imposed via social restrictions enables us to articulate our opposition to it through the juxtaposition of emancipatory engagement of disability praxis. Hence:

Disability praxis = the processes of theory, reflection, action, reflection in relation employing disability politics.

Disability politics = the development, promotion, and practice of politics, i.e. “the set of activities that are associated with making decisions in groups, or other forms of power relations between individuals” which stand in opposition to disabled people’s social oppression.

Disability rights = sets of demands by disabled people to further self-determination and in opposition to their social oppression. Not simply the legal protection of their civil and human rights.

Disability culture = the cultures developed by disabled people in their struggle for emancipation from disability. It is therefore a political counter-culture which rejects ‘normality’ and societal evaluation of living lives with impairments

Disability pride = the expression of defiance (often as celebration of being who and what we are) against unequal and differential treatment and a demand for social justice, equality, and acceptance.

Disability art = production of material that recounts or challenges disabled people’s lived experience of unequal and differential treatment as part of the emancipation struggle.

For me then, these concepts work together and enable us to view disability rights as being primarily about self-determination and disabled people fighting to establish:

• control over defining who and what they are
• control over what is done to their own bodies
• the means to fully participate within social activities without confronting unnecessary restrictions
• that people with impairments are not seeking ‘sameness’, but rather recognition and acceptance of differing lifestyles

Disability rights is also about addressing ‘disabled identities’, internalised oppression and disabled people’s social status within a disablist society.

Disabled within society

This last point returns us to the question of the social roles disabled people have within society. The diversity of disabled communities means that disabled people’s engagement with mainstream society and therefore the social roles they have varies greatly. Finkelstein acknowledged that whilst Wood developed the ICIDH around locating ‘disability’ as a personal limitation, he nevertheless recognised that at the micro level of society – daily interactions – the social restrictions an individual experiences are caused by the negative outcome of the interaction between their personal restrictions caused by their impairment and their immediate social environment. (27)  Wood refers to this as a “handicap” and attributes the cause for the social handicap to be the nature and degree of the individual’s impairment. (28) Finkelstein rejected the view that the negative outcome is caused by the impairment and instead argues that the negative outcome is in fact the result of the actual interaction between the person with the impairment and their social environment – both sides being a contributing factor. What this means is the more significant an individual’s impairment is in terms of social interaction or relations, the more likely it is that their encountered social environment – created by and for people without impairments – will lead to negative interactions.

This is how disability is ‘imposed on top of people’s impairments’: the disabling factor being the negative outcome. Changing the nature of the interaction e.g. altering the social environment will reduce or remove the disabling barriers. (29) During the 1990s this ‘disabling barriers’ approach was popularised through Disability Equality Training and found predominance within the BCODP campaign for civil rights. (30) I am raising it here for three reasons: firstly, I believe the ‘disabling barriers’ approach underpinned the growing call for disability rights and the visualisation of what these “rights” might look like. Secondly, I believe it aids our understanding of how the understanding of what disability rights meant altered and, subsequently, how it contributed to the divided path within the Disabled People’s Movement. Thirdly, I believe the ‘disabling barriers’ approach does demonstrate how at the micro level of society members of differing groups of disabled people can be excluded or marginalised within mainstream social activities but it also neglects the macro level of capitalist society where fundamental changes have occurred under Neoliberalism.

Disabled people’s engagement with mainstream social activities is often determined by the disabling barriers or social restrictions they encounter and this impacts upon the social roles they may have, the actual or perceived social groups they belong to, and ultimately their considered social worth. People can, of course, belong to more than one social group and their socio-economic situation can be used to define them as a social group or class. In the 2001 census, for example, its Socio-Economic Classification (SEC) placed in eighth and final position: ‘people who never worked or long term unemployed’. Williams-Findlay reminds us:

Marxist Economist, Ernest Mandel by going back to Marx’s theory of absolute impoverishment, clarified Marx’s observation that capitalism “throws out of the production process a section of the proletariat: unemployed, old people, disabled persons, the sick, etc.” Marx described these groups as part of the poorest stratum “bearing the stigmata of wage labour.” Mandel reminded us, “…this analysis retains its full value, even under the ‘welfare’ capitalism of… (the post-war era).” (31)

As I have noted elsewhere, not all peple with impairments belong to the underclass, however, a sizeable number do. Many of these people have already faced the brunt of the Government’s austerity measures. The fact that disabled people come from diverse backgrounds is often used as a reason for questioning to what extent they can be regarded as a social group. Brown when exploring social groups and society, wrote:

The structure of any group is based on the existence of social norms. “A social norm is a way of thinking, feeling, or behaving”, which must be perceived by the group members as being appropriate. These norms are what defines the values of the group and provides a basis for determining what is good or bad. (32)

To my way of thinking, the idea that groups are baseon social norms corresponds with Finkelstein’s arguments about disabled people’s own lived experiences. Further, I would suggest that this links my broad definition of disability rights and the emergence of the Disabled People’s Movement. In Campbell and Oliver’s book, disability politics, Barbara Lisicki is quoted as saying:

I don’t think anyone knows for sure what a movement is but essentially what we are talking about is a set of ideas and an analysis which people can support in different ways. I always think of the movement as a set of people that have somehow made a connection with a set of ideas. (33)

Sixteen years later we found Oliver and Barnes speaking about the politicization of disabled people in the following manner:

Initially some disability scholars viewed the politicization of disabled people as a response to their common experience of oppression. …. This provided a unifying group identity and interest while identifying the source of these grievances in the structures and processes of market-led disabling society.

However, they go on to say:

For many people with impairments, engaging in collective action was liberating and empowering and a source of positive identity … (34)

When Lisicki spoke about ‘a set of ideas and an analysis’, I want to suggest she was talking about seeing disability as social oppression and the social model of disability. However, these are the thinking behind disability rights; the actual forging of disability politics came through disabled people’s self-organisation, the creation of disabled people’s organisations and campaigning for independent living and anti-discrimination legislation. This again is not the whole story either. Alongside disabled people’s self-organisation and development of disability politics came their desire to express their experiences, feelings and struggles within a cultural framework that has come to be known as disability culture. All of these activities I would describe as being based on the notion of self-determination. Where I urge caution is where Oliver and Barnes said is their articulation of this collective action as ‘a source of positive identity’ because it opens the door to an interpretation of disability rights as a particular form of “identity politics” which excludes rather than includes people.

The collective identity of Disabled people

I want to employ ideas from Nancy Whittier in order to explore what constitutes a collective identity and how that corresponds to activism within social movements. Whittier notes:

• Collective identity entails a sense of connection with others, beliefs about the nature of one’s group and its place in society, and associated actions in daily life.
• Viewed as three main components of collective identity boundaries, consciousness, and the politicisation of everyday life.
• Differs from social identity where an individual’s sense of self as a member of social groups, such as woman, Latina, student, daughter, etc.
• Collective identity is a group’s definition of themselves as a collective and entails shared beliefs, symbols, and rituals. (35)

Embracing a collective identity, therefore, often involves individuals engaging with processes that confirms their identity, e.g. as Oliver’s criteria sets out, seeking out contexts or interactions that confirm not only membership of the group, but also their internal sense of self. In this sense, the political identity of being a Disabled person corresponds to the collective identity which is operationalised as working as an oppositional group seeking to shape how they – Disabled people – are seen by others as part of seeking to change their group’s status.

Whittier argues that collective identities become politicized through power struggles, as groups define their shared grievances, assign blame for their position, and call for action. Crucial for her is the fact that the construction and politicisation of a collective identity is an important aspect in promoting participation in protest. This is what I believe Barnes and Oliver were alluding to. From her perspective then, the collective identity is what the “identity” in identity politics refers to and making collective identity visible is at the core of visibility tactics.

There are however major problematical areas that are rarely discussed. Being a Disabled person, in a political sense, requires acknowledgement of the oppression they face being coupled with the embracing of the collective identity. UPIAS argued that:

We do not organise because we are people first, nor because we are physically impaired. We organise because of the way society disables physically impaired people, because this must be resisted and overcome. The Union unashamedly identifies itself as an organisation of physically impaired people, and encourages its members to seek pride in ourselves, in all aspects of what we are. (36)

Is there a certain ambiguity in this message which makes it difficult to understand or articulate? UPIAS was not idealist, their motive was not to validate people with physical impairments’ “humanness”, nor did they self-organise on the basis of having common experience of physical impairment; the focus was on the implications of having physical impairments in a society that penalised people who have physical impairments. It is still a feature of the politics of disability that the position of impairment reality in social approaches towards disability remains contested. If people were not impaired or perceived as impaired, then they would not encounter associated social restrictions, but how impairment reality is factored into negative or oppressive interactions is still open to debate. Within the International Classification of Impairment Disability and Handicap, later replaced by the International Classification of Functioning, impairment is still implicated as the direct cause of social disadvantage. (37) Both UPIAS and Oliver, severed this direct causal link, but this does not mean impairment reality is not a factor at all. It is not impairment reality that is disabling in terms of social relations, but rather the societal responses to impairment reality. Having functional limitation, for example, in terms of mobility is an impairment reality and a personal restriction; but what transforms this into a disabling situation is how agencies within society respond to people who are mobility impaired.

Because in dominant ideologies and many post-modern discourses the relations between impairment, functionality and social restrictions are often conflated, how people can make sense of the identity of being “disabled” is hard to determine. Some reject both the oppressive label/identity and the collective political identity, others reject one or the other; however, I would argue most disabled people have never been exposed to the very idea of ‘disabled’ as anything other than a personal characteristic to be managed or be ashamed of. In my opinion for the majority of people with impairments who identify in some way as being ‘disabled’, this is through acceptance of dominant ideologies and their social situation. It is only with the raising of socio-political consciousness that this naturalised common sense becomes disturbed and the possibility of seeing one’s self and others differently.

The hegemonic power of dominant ideologies rests with the negative appraisal of impairment/disability. The social model was therefore part of a counter-hegemonic process which combined both politics and culture, but the lack of clarity in terms of where impairment reality sits, has distorted our understanding of who and what we are. I believe Paul Abberley offers a useful framework here. He argued that a theory of disability as oppression would:

• Recognise and, in the present context, emphasise the social origins of impairment
• recognise and oppose the social, financial, environmental and psychological disadvantages inflicted on impaired people

(3) sees both (1) and (2) as historical products, not as the results of nature, human or otherwise

(4) assert the value of disabled modes of living, at the same time as it condemns the social production of impairment

(5) is inevitably a political perspective, in that it involves the defence and transformation, both material and ideological, of state health and welfare provision as an essential condition of transforming the lives of the vast majority of disabled people.

I believe it is necessary to unpack what Abberley meant by ‘the value of disabled modes of living’ and to do this I want to draw attention to the fact he advocated a social model of impairment. He said what is required is:

…. essentially an attitude of ambivalence towards impairment…. Impairment must be identified as a bad thing, insofar as it is an undesirable consequence of a distorted social development, at the same time as it is held to be a positive attribute of the individual who is impaired. (38)

As previously noted, the positioning or role of impairment in disability politics is perhaps the most contentious and inadequately discussed of issues. Disabled people fighting against exclusion and marginalisation; for their right to self-determination and liberation, are the bedrock of disability politics and the essence of our collective identity. However, Whittier informs us that:

Collective identity is not a simple reflection of a group’s structural location, for example, its race and gender. It is an interpretation of that structural location or status that emerges from activism, conversation, experience, and reflection. (39)

Disabled people’s structural location is not a share personal characteristic, but a socio-political one: our exclusion and marginalisation within society, nevertheless this is due to the framing of impairment/disability within society. Here is where Abberley offers a concise way of articulating this:

A crucial feature of oppression and the way it operates is its specificity, of form, content and location; so to analyse the oppression of disabled people in part involves pointing to the essential differences between their lives and those of other sections of society, including those who are, in other ways, oppressed. …. To claim that disabled people are oppressed involves, however, arguing a number of other points. At an empirical level, it is to argue that on significant dimensions disabled people can be regarded as a group whose members are in an inferior position to other members of society because they are disabled people. It is also to argue that these disadvantages are dialectically related to an ideology or group of ideologies which justify and perpetuate this situation. Beyond this it is to make the claim that such disadvantages and their supporting ideologies are neither natural nor inevitable. Finally it involves the identification of some beneficiary of this state of affairs. (40)

Our oppression and social situation are not caused by our impairments, but nonetheless result from the fact that we do have impairments. What this means, using Abberley’s terminology, is that ‘disabled modes of living’ refers to our strategies, lifestyles, cultures, that come from living with impairments within disablist societies. Disabled people’s social oppression is ever present, but it is not the only thing that shapes our individual identities or lifestyles. Our ‘disabled modes of living’ may be created or touched by our social situation, but most d/Disabled people are not consciously engaged in disability politics twenty four seven. This said, what about the existence of disability culture in all of this? I would argue that disability politics only resonates through the embracing ‘pride in ourselves, in all aspects of what we are’, as UPIAS put it, or as Abberley suggested, viewing our impairments as ‘positive attributes’. Our impairments are part of who and what we are. It is, of course, up to individuals to decide their ownership or relationship with their impairments, but within terms of developing a social, political, and cultural response to our oppression and the group of ideologies which justify and perpetuate our situation, it has been important to challenge ‘disability as individual tragedy’.

This challenge has not be easy because the hegemonic power of dominant ideologies is extremely strong and well established within mainstream cultures, language, and expectations. As previously stated, the majority of disabled people have either internalised the language and concepts associated with ‘disability’ (sic), or they have rejected any association with it altogether. Reaching out to these disabled people is extremely difficult.

This situation is further complicated by the nature of our social oppression – the social, financial, environmental, and psychological disadvantages inflicted upon impaired people – which impacts on our sense of self, hinders our lifestyles, thwarts self-determination and ability to self-organise and build community. The Disabled People Movement sought to build itself through the self-organisation of disabled people’s organisations which were expected to draw their membership from disabled communities. From the outset this was hampered by the disabling barriers they encountered. Our ability to understand the dilemma of the Disabled People Movement is perhaps assisted by Whittier’s outline of how most social movements work. Their existence is shaped by their ability ‘to define their constituency in their own terms, promoting that definition to the larger public and using it as a basis to critique existing definition.’

The Disabled People Movement attempted to do this via the social model and Disability Equality Training, but I believe this was internally undermined by the politics of sections of the Movement. The passing of the Disability Discrimination Act was a political defeat, but the real betrayal came when Disabled activists refused to resign from the Disability Task Force set up by New Labour. The double refusal – Labour rejecting a social model definition of disability and BCODP representatives refusing to quit at this point – sounded the death knell of the Disabled People Movement. Why do I believe this to be the case? My answer is straight forward, the Disabled People Movement lost its purpose at this moment in time because as Whittier explains:

Groups present their collective identity publicly as a strategic attempt to frame their own collective identity as well as that of opponents. Overall, collective identity can be a goal in itself, can be strategically deployed publicly to advance other movement goals, and can promote mobilization.

The Disabled People Movement allowed New Labour to politically neuter it; it abandoned disability politics in favour of meaningless ‘integration policies’ and individualistic legal citizen rights. The disabled communities were left high and dry with fewer disabled people’s organisations in existence and those that were soon found the pull away from politics towards service delivery too great. This takes us full circle back to the divisions within the disabled people’s movement.

The loss of disability politics, disability culture and the existence of a powerful collective identity since the middle of the 1990s, has left most disabled communities in limbo or developing in ways absent of radical disability politics. On reflection I would argue we failed to address the relationship between disabled people’s organisations and the communities they were supposed to serve and draw from. Our culture was neglected in favour of quick fit political solutions ironically called “rights”. By the time the Age of Austerity came, is it surprising that disabled people were well and truly screwed?

Where now?

I believe there is little or no chance of creating a new Disabled People Movement or invigorating disability politics until we address the issue of understanding disability communities and explore how we can build, support, and intervene within them. What is required is much more than a shot of new disability politics or a questionable attempt to reinvigorate the social model of disability. We need to develop a fresh disability praxis by reflecting upon the usefulness of existing models of disability. I believe both of Mike Oliver’s models are time-bound and are not useful ‘tools’ for exploring either current dominant ideologies and practice in relation to disabled people or the nature of disablement and disablism.

The individual tragedy model, for example, pre-dates the emergence of the World Health Organisation’s ICF which means it does not address the Neoliberal ideological shift of ‘looking at ability, not disability’ (sic) as part of the self-reliance and anti-welfare state narratives. (41) We also need to politically address the inappropriate and misleading idea of a “medical model” (sic) as it hinders our ability to articulate how a range of dominant ideologies intersect to establish disablism. The “medicalisation” of our bodies has nothing to do with medical intervention; it is a method of evaluating socio-economic worth where the extremes are ‘kill or cure’. (42) The social model also has become problematic. It has become a sacred cow rather than a tool. Often people employ a variety of ‘social models’ rather than THE social model itself. Most people have a crude understanding of how to apply the historical materialist social model’s methodology. Oliver explained:

Using the generic term does not mean that I do not recognise differences in experience within the group but that in exploring this we should start from the ways oppression differentially impacts on different groups of people rather than with differences in experience among individuals with different impairments. (43)

When I hear representatives of a variety of ‘different groups’ of disabled people state the social model does not ‘work for them’, I listen to why they believe that. Each time they illustrate a failure to apply exploring how oppression differentially impacts upon THEIR GROUP; instead, they tend to moan about false comparisons with other disabled people. I do believe a historical materialist social approach can do the business, but here is a thought, does it matter if an alternative method of understanding and challenging oppression is developed? Whoever said the social model is a materialist bible or the sum total of disability politics?

In terms of disability politics, I believe we need to reconstruct our collective identity, discover ways of overcoming communication barriers, challenge how impairment/disability is made sense of among all the groups I mentioned earlier. Paramount in all of this process work has to be drawing the contours around the commonalities and differences that exist between us. This raises again the question of what constitutes ‘disabled communities’? Using a historical materialist social approach, I would argue that these communities exist because of the nature of capitalism and, consequently, how this comes to impact upon people with impairments within them. Living disabled lives is a social situation, but within that lies a myriad of issues including discovering cultures of resistance – personal, social, political, but most importantly, as a collective whole.

*I used Disabled people to mean those who have embraced the collective identity “as a tool to frame political claims, promote political ideologies, or stimulate and orient social and political action, usually in a larger context of inequality or injustice and with the aim of asserting group distinctiveness and belonging and gaining power and recognition.” Similarly, I refer to ‘disabled people’ as those who may or may not acknowledge they are socially oppressed. This produces d/Disabled activists who can be aware of discrimination but not necessarily signed up to radical disability politics.

Footnotes

(1) https://www.bing.com/search?q=definitions+of+community&FORM=QSRE1

(2) Oliver, M., (1994) Capitalism, disability and ideology: A materialist critique of the Normalization principle

(3) Oliver, M. and Barnes, C., (2012) The New Politics of Disablement, London, Palgrave Macmillan, p.7                                 (4) Thomas, C., (2004) How is disability understood? An examination of sociological approaches, Disability and Society, 19, 6, 569– 83.

(5) Clifford, E., (2020) The War on Disabled People Capitalism, Welfare and the Making of a Human Catastrophe, Zed Books

(6) Abberley, P., (1987)  The Concept of Oppression and the Development of a Social Theory of Disability,                      Disability, Handicap & Society, Vol. 2, No. 1

(7) Oliver, M. & Zarb, G., (1989). The politics of disability: A new approach. Disability, Handicap & Society, 4, 221-239

(8) Campbell, J. & Oliver, M., (1996) Disability Politics: Understanding Our Past, Changing Our Future, Psychology Press                                                                                                                                                                                            (9) Williams-Findlay, B., (2019) The Disabled People’s Movement in the Age of Austerity: Rights, Resistance and Reclamation in Resist the Punitive State: Grassroots Struggles Across Welfare, Housing, Education and Prisons, edited by Hart, Greener, Moth

(10) Oliver, M. and Barnes, C., (2012) The New Politics of Disablement, London, Palgrave Macmillan

(11) Williams-Findlay, B., (2019)

(12) Ibid.

(13) https://www.disabilityrightsuk.org/policy-campaigns/campaigns/hardest-hit-campaign

(14) Williams-Findlay, B., (2019)

(15) Shakespeare, T., (2006) Disability Rights and Wrongs. Oxford and New York: Routledge.

(16) Tarrow, S. G., (1998) Power in movement: social movements and contentious politics, Cambridge Press

(17) Oliver, M. and Barnes, C., (2012) The New Politics of Disablement, London, Palgrave Macmillan, p173

(18) Ibid.

(19) Williams-Findlay, B., (2019)

(20) https://www.rofa.org.uk/

(21) I attribute this quotation to Mark Lynes who made a comment on Bob Williams-Findlay’s Facebook page in 2012

(22) https://www.merriam-webster.com/dictionary/self-determination

(23) McLeod, S.  (2008) Social Roles, Simply Psychology

https://www.simplypsychology.org/social-roles.html?source=post_page-

(24) Union of the Physically Impaired Against Segregation,., (1981) Disability Challenge 1

(25) Finkelstein, V., (1990) EXPERIENCE AND CONSCIOUSNESS – Notes for Psychology of Disability Talk Liverpool Housing Authority

(26) Leonard, P., (1984) Personality and Ideology: Towards a Materialist Understanding of the Individual. London, Macmillan

(27) Finkelstein, V., (1998) THE BIODYNAMICS OF DISABLEMENT?

https://disability-studies.leeds.ac.uk/wp-content/uploads/sites/40/library/finkelstein-Biodynamics.pdf

(28) World Health Organization., (1980) International classification of impairments, disabilities, and handicaps: A manual of classification relating to the consequences of disease. Geneva, Switzerland

(29) Thomas C., (2002) Disability theory : key ideas, issues and thinkers. In Barnes C, Oliver M, Barton L, editors, Disability studies today. Cambridge: Polity Press. p. 38-57

(30) Gillespie-Sells, K.; Campbell, J., (1991) Disability Equality Training the Trainers‟ Guide, LBDRT, London: CCETSW

(31) Williams-Findlay, B., (2011) Lifting the Lid on Disabled People Against Cuts

See, http://disability-studies.leeds.ac.uk/files/library/williams-findlay-Lifting-the-Lid-on-Disabled-People-Against-Cuts-D-S-final.pdf  2011

(32) Brown, R., (1999) Group processes: Dynamics within and between groups 2e. Oxford: Wiley Blackwell.

(33) Campbell and Oliver,1996: 21

(34) Oliver, M. and Barnes, C., (2012) p171

(35) Whittier, N., (2017) Identity Politics, Consciousness Raising, and Visibility Politics, Prepared for The Oxford Handbook of U.S. Women’s Social Movement Activism p.8/9

(36) Union of the Physically Impaired Against Segregation, (1981) Disability Challenge 1 p.7

(37) Barile, M., (2003) Globalization and ICF Eugenics: Historical coincidence or connection? The More Things Change the More They Stay the Same, Disability Studies Quarterly, Spring, Volume 23, No.2 pp. 208-223 http://www.cds.hawaii.edu/dsq

(38) Abberley, P., (1997) The Concept of Oppression and the Development of a Social Theory of Disability in Disability Studies: Past Present and Future edited by Len Barton and Mike Oliver; Leeds: The Disability Press, pp. 160 – 178, p.176

(39) Whittier, N., (2017) p.9

(40) Abberley, P., (1997) p.164

(41) Barile, M., (2003)

(42) Ruhi, S. Airlie, M. Sajawal, H. Towers, L. and Da Silva, L., (2017) MEDICALISATION, NORMALITY AND THE BODY

https://medicalisationofwomenhomosexualityanddisabledbodies.wordpress.com/2017/05/09/the-medicalisation-of-disabled-bodies/

(43) Oliver, M., (1994) Capitalism, disability and ideology: A materialist critique of the Normalization principle