What is disability? If
you were to ask a mixed group of disabled and non-disabled people this question
the chances are that the number of answers given could almost add up to the
same number as those present in the room! The problem is that there are many
different and often opposing ways of defining ‘the disability problem’. In
general terms these definitions tend to fall into two broad camps; the
traditional approaches with a focus on the degree to which a person’s condition
or impairment prevents them from fulfilling the roles and expectations usually
carried out by so called ‘normal people’ (sic) and social approaches which
identify disability as being ‘imposed on top of our impairments by the social
organisation of society’.
The main emphasis within this
article will be an explanation of how and why the Disabled People’s Movement
shifted the ‘disability problem’ away from viewing it as a negative attribute
of an individual, towards addressing it as a form of social oppression and how
this oppression has developed.
Why definitions of disability are historically
specific
There have always been people
who, because of injury, disease or genetic makeup, have had bodies that are not
fully functional. Research shows that the treatment of people with impairments
has varied greatly down the ages however it was not until the development of
the capitalism mode of production was there a systematic approach to classifying
individuals into distinctive groups.
Gleeson explains:
“…. an important critique has
been developed of the root cause of disablement – the capitalist system.
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.”
[1]
By the middle of the
nineteenth century British society had felt the impact of the Industrial
Revolution. The harsh realities it produced created economic and social
upheavals which brought about, in turn, moral panics around the fear of
illness, disease and depravity. Social reformers sought to replace chaos with
control – contours around what was considered ‘normal’ were drawn and those
groups thought to be polluting society – outside ‘normality’ – were withdrawn
from the public gaze.
The increased usage of
institutionalisation, the birth of the eugenics movement and the proliferation
of charities contributed towards ‘cleansing’ society of its mad and hapless
cripples. Non-conformity was unacceptable and those people deemed incapable of
keeping standards associated with ‘normal activities’ – productive and
reproductive – had to be ‘taken care of’ in more senses than one.
These processes firmly
established people with significant impairments as ‘outside’ mainstream
society; however it took the First World War to shape the dominant approaches
that viewed disability as ‘an individualised personal tragedy’. Medical
practice since this time has focused firmly on how the body ‘functions’
vis-à-vis social tasks and doctors along with other professionals were
concerned with the impact of impairments on people’s capabilities. In crude
terms, the less someone functioned ‘like a normal person’ (sic), the more
‘disabled’ they were judged to be. Key ideologies such as individualism and
normality contributed to the process of identifying ‘disability’ as the
negative outcome of a loss of function caused by an individual’s impairment.
This view of the ‘problem of disability’ remained largely unchallenged for the
next fifty years.
Disability: a personal tragedy or social oppression?
When a challenge did come it
came from the ranks of disabled people. Our starting point is to recognise that
the Disabled People’s Movement emerged during the late 1960s and early 1970s
when groups of disabled people began to question why they were either excluded
from or marginalised within mainstream social activities.
The roots of the Union of the
Physically Impaired Against Segregation (UPIAS) stem from Paul Hunt when in
1972 he wrote a letter to the Guardian inviting disabled people to form a group
to tackle disability. Paul formed his ideas whilst living in an institution
called Le Court. He and other residents had been involved in a long and bitter
struggle with the authorities over the right of disabled people to have control
over their lives within the institution and for some representation on the
management committee. The significance of this particular struggle was that
during the course of their struggle, he and others had started asking some very
fundamental questions about the nature of the helper/ helped relationship, the
powerless that they were having imposed on top of their impairments, and about
why this was the case.
Paul’s partner, Judy Hunt,
wrote:
“UPIAS exposed disability as
an oppressive relationship, and a power relationship of control. It was these
ideas – taken on by the Disabled People’s Movement – that became the important
liberating factor in the movement.” [2]
The ideas of UPIAS were made accessible
to disabled people and their organisations via one of its members, a disabled
academic called Mike Oliver who developed two models of disability – the
individual tragedy model and the social model. It is important to recognise
that a model is a ‘schematic description of a system, theory, or phenomenon
that accounts for its known or inferred properties and may be used for further
study of its characteristics.’ [3]
So Oliver used the
‘individual tragedy model’ to explore the dominant ideologies and practice in
relation to disability in the UK [4]. How ‘disability’ is defined and then
employed in law, social policy and day-to-day social and cultural activities
has been rejected by the Disabled People’s Movement because it presents
disabled people in ways which are often considered negative and, as a result,
increases the possibility that a disabled person could experience either
discrimination or be forced to accept segregated services. The emphasis is on
disabled people’s lack of ability, caused by their condition, which is
then measured as a means of explaining (and legitimating) why they are unable
to ‘fit into’ the mainstream of social activities.
Disabled people argue this
approach misrepresents the facts. The alternative ‘social model’ approach has
as its starting point the recognition that often having a condition or
impairment does have an impact upon our lives; however this is not the direct
cause of people with impairments’ social exclusion. If an individual
evaluates their impairment in negative terms, which they may, this is not the
same as being judged as ‘tragic’ in societal terms because of the perceived
non-conformity of the body or mind and the subsequent absence of social value.
It is precisely how people with impairments are ‘made sense of’ which
ultimately leads to them not being ‘taken into account’ by given western
societies. Thus it is within the social organisation of society; mode of
production, societal structures, systems, culture and values, etc. where the
social restrictions are created for disabled people.
The social oppression understanding of disability
Oliver explains:
“The more detailed
elaboration of the social model stemmed from attempts to apply this insight
into practice: firstly, in training of social workers, and secondly, in the
design and delivery of disability equality training. … I was trying to provide
my students with a way of applying the idea that it was society and not people
with impairments that should be the target for professional intervention and practice.”
[5]
Disability Equality Training
argues that if more time was spent ‘taking into account’ how the design
and organisation of things affected disabled people then we might see real
change. The emphasis within the social model approach is concerned with looking
at the differing ways in which people with impairments encounter what we call
‘disabling barriers’. Disabling barriers are created when not enough attention
is paid to the issues which impact on disabled people’s lives. For example,
their access needs, the surroundings in which disabled people find themselves
in or simply the negative attitudes people hold. Our conditions or impairments
may reduce our functional ability, but more often than not, the disabling
factor is external to the person and could be reduced or removed by ‘planning
disabled people in’ or if needs be, adapting the world in which they want to
live.
The materialist based social
model sees disability as the creation of social restrictions which result from and
contribute to the oppression of people with impairments via systems and
structures which serve in the interest of capitalism. The nature of this
treatment – often discriminatory – is experienced in a myriad of ways. People
with physical impairments and mental health service users, for example, can
encounter very different disabling barriers due to how, historically, society
has determined the social relations of the membership of these groups. This
includes the use of pejorative labels. At a micro level of society, disabling
barriers can be down to the failure to introduce inclusive practice, however at
a macro level disability is structured and takes on the character of
institutional discrimination – e.g. the labour market, legal system, government
policy, etc.
The emphasis within social
approaches to disability is simple: look at ways of changing the social organisation
of society in order to accommodate people with impairments. This has resulted
in an array of ‘interpretations’ of the social oppression approach to
disability ranging from reformist to revolutionary. Gleeson, for example,
argues:
“The ‘materialist’ or
‘radical’ social model understands disability to be a logical outcome of the
capitalist mode of production… This version of the social model insists that
‘the fundamental relationships of capitalist society are implicated in the
social oppression of disabled people’. Logically, ‘the elimination of
disablement… requires a radical transformation, rather than a reform of
capitalism.” [6]
How disabled people are
subjected to differential and unequal treatment must also be addressed in terms
of the changing economic and social climate. Their active inclusion in
the labour market, for example, directly corresponds to the demand for labour
or the desire to slash public expenditure. The social model of disability
developed by Oliver related primarily to the social democratic phase of
capitalism therefore the shift in the direction towards Neoliberalism and the
savage attacks upon the welfare state has been inadequately addressed at a
theoretical level. In terms of the struggle for emancipation, it is perhaps
paradoxical that at the very moment disabled people secured some legal
protection, the neoliberal agenda was about to bite.
Disability in the age of austerity
It is not enough to simply
acknowledge disabled people are disabled by systems, structures and services
which either fail to meet or inadequately meet disabled people’s needs. The
impact of current government policies – the reduction in public expenditure at
national and local levels, the removal of services, the destruction of jobs and
communities – will only result in greater hardship and social exclusion.
The creation of Disabled
People Against Cuts in 2010 was not a spur of a moment thing; a knee-jerk
reaction to what the Coalition was doing. The roots of DPAC were firmly within
the politics of the social movement we often refer to as the Disabled People’s
Movement. A social movement is defined as a collective identity around key
demands for social change. Disabled academic Mike Oliver spoke of the Disabled
People’s Movement as a social movement because:
- it was peripheral to conventional politics
- offered a critical evaluation of society
- embraced ‘post-materialist’ or ‘post-acquisitive’
values (e.g. non-exploitative or anti-capitalist in nature)
- had an internationalist perspective
Oliver also stated that a
‘…key feature of the Disabled People’s Movement has been its focus on social
exclusion and oppression.’ As a direct consequence of this ‘shared perspective’
disability politics of the Disabled People’s Movement:
a) Placed an emphasis on
self-organisation;
b) Had a commitment to
radical political action to promote change;
c) Sought to improve the
quality of disabled people’s lives and worked to promote their full
inclusion into society [7]
It is doubtful that many disabled
activists would disagree with this broad picture, although some might suggest
that over the life of the movement there were elements within the Movement
that moved away from these politics or have subjected them to
‘reinterpretation’. One area that has been subject to detailed
‘reinterpretation’ is the idea of “disability rights” and it can be found in
what is nowadays called the Disability Movement.
The rise of the Disability
Movement
Since the early 1990s
there has been a growing tendency among charities, public and voluntary sector
bodies to adopt both the language and concepts of the Disabled People’s
Movement but in the process, gutting them of their original meanings and intent.
Antonio Gramsci referred to this process as being, “transformismo”. [8]. It is
quite common these days to see local authorities for example speak about
supporting the social model or implementing what is called ‘independent living’
however any scrutiny of their policies and practices reveal their approaches
are a million miles from those developed by the Disabled People’s Movement. The
failure of the Disabled People’s Movement to address this issue and the
unwillingness to discuss divisions within our own ranks has produced an
unhealthy situation where the community of disabled people are witnessing
conflicting approaches towards defending “disability rights” and not fully
understanding or appreciating what lies behind these conflicts.
There is not a single factor
that led to these divisions. Tensions existed prior to and after the defeat of
the Civil Rights Bill and the passing of the Disability Discrimination Act
(DDA). Vic Finkelstein who helped establish the Disabled People’s Movement
believed there was a too narrow focus on obtaining ‘anti-discrimination
legislation’ whilst others concluded that the DDA was in fact a victory for
disabled people – which goes against all the evidence that exists. [9] The
differing positions taken on the DDA was the first indication of a fundamental
split within the Disabled People’s Movement and it resulted in a tendency
emerging with a focus solely on protecting and extending “disability rights”.
Here was a clear division between those who stood for radical political action
to promote change and a revision of the politics of disability which offered a
reformist agenda. Although the actual division is clear, the forces who make up
the two camps isn’t necessary obvious. Some disabled people’s organisations and
individuals moved away from radical interpretations of social oppression and
began to open a dialogue with traditional disability charities such as Scope
and Leonard Cheshire Disability who were ‘using the right language’ (sic).
People such as Tom Shakespeare argued these organisations had ‘changed’; but
time and time again these charities have been found to be employing double
standards – speaking about ‘disability rights’ one minute and promoting
‘disability as a personal tragedy’ the next.
Many of the
organisations who were involved in the ‘Hardest Hit Campaign’, including Disability
Rights UK, sent out mixed messages to both disabled people and the Coalition.
[10] This ‘disability rights’ approach
spearheaded by leading disability charities had been supported by Tony Blair’s
Labour government via its ‘rights and responsibility’ agenda which had
effectively marginalised the waning Disabled People’s Movement. What emerged was
the formation of a ‘Disability Movement’ which sought to present disability as
an ‘opportunity’ within the marketplace. [11] The notion of ‘disability rights’
became little more than a question of consumer rights and these charities were
quite happy to take part in the Conservative government’s benefit reform
programme whilst at the same time criticising the assessment processes with the
introduction of the biopsychosocial model of disability. Suddenly social
oppression was assigned to the dustbin; we were informed that everyone favours
‘inclusivity’ – this in an age of austerity where disabled people were becoming
less and less able to access mainstream provision or live independently. An
Orwellian nightmare was unfolding before our eyes.
The reality of the current situation
There are services run by
local authorities that are not run in the best interests of communities –
including disabled people – but simply taking an axe to them does not provide
us with an opportunity to change the service nor provide a better one. The cuts
are taking us away from and not towards any notion of building a more inclusive
society; cuts are reducing our ability to expose the disabling nature of the
society in which we live. Cuts right across the board are hampering ordinary
people’s ability to take control over their lives and many disabled people,
though marginalised within the mainstream now, are experiencing increased
exclusion from all mainstream social activities. Cuts have resulted in
premature death caused by worry, increased poor health and inadequate support
arrangements.
Since 2010 within the field
of social policy, supported by reports from the mass media, there Is a “common
sense” understanding that ‘disabled people are dependent creatures who are
unemployed and on benefits’ and the focus is on ‘those with the greatest needs’
(sic). [12] A key corner of ‘disability politics’, namely Independent Living,
has been politically gutted under Neoliberal policies.
On August 24th
2017, Disability News Service reported that an international committee of disabled human rights experts have
delivered a series of withering attacks on the UK government over its failure
to implement the UN Convention on the Rights of Persons with Disabilities. The committee’s chair, Theresia Degener from
Germany, told the UK government’s delegation that its cuts to social security
and other support for disabled people had caused “a human catastrophe”, which
was “totally neglecting the vulnerable situation people with disabilities find
themselves in”. [13].
Perhaps now more than ever before,
it’s time to articulate within mainstream politics what the Disabled People’s
Movement has been arguing for over forty years: disability is a form of social
oppression.
NOTES
1. Gleeson, B.
J. 1997. Disability Studies: a historical materialist view.
Disability and Society,
12 (2), 179-202.
2. See, http://disability-studies.leeds.ac.uk/files/library/Hunt-J-a-
revolutionary- group-with-a-revolutionary-message.pdf
3. See,
https://ahdictionary.com/word/search.html?q=model
4. Oliver, M.
1990. The Politics of Disablement, London: Macmillan
5. Oliver, M.
2004. The Social Model In Action: If I had a hammer? in Implementing
the Social Model of Disability: Theory and
Research edited by Colin Barnes and Geoff Mercer 2004. Leeds:
The Disability Press, pp. 18-31.
Available
at: http://disability-studies.leeds.ac.uk/files/library/Barnes- implementing-the-social-model-chapter-2.pdf
6. See, Gleeson,
page 196.
7. Oliver, M. and Barnes, C. 2012. The New Politics of Disablement,
Palgrave Macmillan: London
8. Cox, R. W. 1996.
Gramsci, Hegemony and International
Relations:
An Essay in Method, in R.W. Cox and T.J. Sinclair, 1996.
Approaches to World Order, Cambridge:
Cambridge University Press Page.51
9. See, http://pf7d7vi404s1dxh27mla5569.wpengine.netdna-
cdn.com/files/library/finkelstein-The-Social-Model-of-Disability-and-the-
Disability-Movement.pdf
10. See,
http://disability-studies.leeds.ac.uk/files/library/williams-findlay- Lifting-the-Lid-on-Disabled-People-Against-Cuts-D-S-final.pdf 2011
` 11. See,
https://dpac.uk.net/2012/12/a-question-of-intent/
12. See,
http://www.dpac.uk.net/2012/04/a-tale-of-two-models-disabled- people-vs-unum-atos-government-and-disability-charities-debbie-jolly/
March 2012
13. See,
https://www.disabilitynewsservice.com/uk-faces-un-examination- government-cuts-caused-human-catastrophe/
.