What Do Disabled People Really Want?
Third in the series
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:
- Rethinking Commissioning
- Rethinking industrial strategy
- 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
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)
- Davis, K. (1984) NOTES ON THE DEVELOPMENT OF THE
DERBYSHIRE CENTRE FOR INTEGRATED LIVING (DCIL) page 1
- 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
- Davis, K. (1984) page 3
- Davis, K. (1984) page 3
- Davis, K. (1984) page 3
- See the A4I Vision and strategy.
Vision and strategy
- Within the A4I Vision a ‘holistic approach’ is referred to.
- Davis, K. (1984) page 2
- I believe this was evident in the A4I discussion.
- ROFA’s vision paper has contraposed positions with it.
- Davis, K. (1984) page 3
- 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
- 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
- Martin, L. (Undated) Promoting Social, Economic, and Political Inclusion
- Inclusion Me network (2008) What does Inclusion mean?
- Finkelstein, V. (1992) Transport implications of care in the community, page 3
- 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
Campaign for a National Independent Living Service (NILS)
- Towards the National Care Service – LABOUR’S VISION
- Harrison, M. and Beresford, P. (2017) SOCIAL CARE IS BROKEN BEYOND REPAIR – SO WHAT SHOULD REPLACE IT
- 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.