One of the goals I set myself in writing this blog was to try and set current debates on disability and policy in the context of what has happened over the last 30 years. The value of taking a longer term view is very much demonstrated, I think, by current debates about welfare reform and the relevance of the social model.
A key feature of these debates is the emergence of campaigners whose voices tended not to be heard amongst previous campaigning on disability issues. Given a voice by social media, and fuelled by the unprecedented attacks on long-term sickness benefits, these are people who emphasise the impact of ill health (including mental ill health) and impairment on their ability to gain and retain paid employment. People like Kaliya Franklin and Sue Marsh have written in detail about personal experiences of long-term ill health while at the same time challenging the government on their welfare reform policies.
This has prompted some to assert that the social model of disability is being undermined by the ways in which campaigns against welfare reform have focussed on the injustice of declaring ‘sick’ or ‘ill’ people ‘fit for work’. For example, Mike Oliver wrote in his Disability Now blog: “most of the political campaigning that has taken place in defence of our benefits and services has forced disabled people back into the role of tragic victims of our impairments and has involved others undertaking special pleading on our behalf. In fact, it has taken us back more than 30 years to the time before the social model came into existence.”
Mike also reminded us that those who developed the social model “insisted that the link between illness and disability should be severed for the purpose of planning and delivering services.”
Neil Crowther has provided an excellent analysis of the implications of such a separation in the current context of welfare reform, concluding that “Creating a false dichotomybetween illness/sickness on the one hand and disability on the other, whetherto protect the social model or social security is in no-one’s interest.”
It is useful, however, to step back and both clarify the language we are using in this debate and set it in a wider context.
A common understanding of language is always important to analysis and policy development, but is even more important in the context of discussions about disability because of the enormous confusion over what we mean by ‘disability’.
In popular discourse, ‘disability’ means something being ‘wrong’ with your body or mind. In this sense, to be ‘disabled’ means to, for example, not be able to walk, or to see, or to hear, or to read or write, and it is assumed that these functional limitations determine what a person is able to do. If someone is to receive help from the state, therefore, eligibility will be determined by assessing their level of functional impairment, i.e. their level of ‘disability’ which in this sense means their level of ‘inability’. Moreover, if the ‘problem’ is impairment then the response needs to be health and other specialist services aimed at curing, treating, rehabilitating or managing those conditions.
It may be tedious to those familiar with the history of the disability movement to reiterate how we have challenged this world view. But we need to keep restating this challenge because changing the meaning of the word ‘disability’ is absolutely necessary to changing our position in society.
So, to be absolutely clear, during the 1970s and 1980s disabled people developed a different way of explaining our social and economic experiences – and in doing so adopted different meanings for the words ‘disability’ and ‘disabled’ than that described above. As the British Council of Organisations of Disabled People explained, in 1981:
“Disability is the disadvantage or restriction of activity caused by a society which takes little or no account of people who have impairments and thus excludes them from mainstream activity. (Therefore, disability, like racism or sexism, is discrimination and social oppression).’
Impairment is a characteristic, feature or attribute within an individual which is long term and may or may not be the result of disease or injury and may:
1. affect that individual’s appearance in a way which is not acceptable to society, and/or;
2. affect the functioning of that individual’s mind or body, either because of, or regardless of society, and/or;
3. cause pain, fatigue, affect communication and/or reduce consciousness.”
Refusing to use the word ‘disability’ to mean impairment – but instead using it to refer to disabling barriers/oppression – is as important as refusing to refer to adult women as ‘girls’. It is part of bringing about a wholesale change in social attitudes – a necessary precondition to changing socio-economic experiences.
The social model enables us to place our experience of disadvantage in the context of how individuals, organisations and institutions interact with us. The medical model places the focus entirely on how we experience our impairments. Medical model thinking is embedded within our culture – as deep-seated as sexism, and as damaging. In spite of the government, and many local authorities, claiming that they take a social model approach, eligibility for benefits and services is still determined by assessment of how much our bodies are affected by impairment and/or illness, rather than the disabling barriers we experience.
The insistence on separating out the experience of our bodies from the disabling barriers we experience came out of the struggle against segregation and exclusion. Indeed, many of those who developed the social model had been consigned to institutional care.
As Liz Crow wrote, the social model has been liberating for many, many disabled people: “It has enabled a vision of ourselves free from the constraints of disability (oppression) and provided a direction for our commitment to social change. It has played a central role in promoting disabled people’s individual self-worth, collective identity and political organisation. I don’t think it is an exaggeration to say that the social model has saved lives.”
The damage that the medical model inflicts on us is demonstrated by its application by the social care system, as illustrated by one mother writing about her daughter’s recent experience of being assessed:
“…now my daughter has turned 18, and she is entitled to support in her own right. She has a desire and right to live an independent life, apart from me, replacing my unpaid support with social care. But to get this, she has to claim she is desperate, unhappy, "crumbling". She has to conform to the image of the thwarted disabled girl she – and I – have spent the last 18 years fighting. She has to openly declare her life is a tragedy. The assessment process is entirely based on what you can't do. In several interviews with social workers, each lasting over two hours, my 18-year-old daughter has had to talk about her inability to wash, dress, walk, sit, get in and out of bed… As soon as the social worker left, my daughter burst into tears. Spending over two hours talking about all the things you can't do is hard for anybody. In a world in which being proud, powerful and disabled means challenging every assumption made about you, this is particularly wounding.”
No wonder we don’t want to talk about what our bodies can’t do, about pain, fatigue, about feeling so depressed you can’t bring yourself to speak to anyone. No wonder we insist that assessments and eligibility shouldn’t be about our incapacities, our ‘vulnerabilities’ but instead about what support we need and changes others should make to enable us to go about our daily lives.
But to deny the experience of our bodies is, in fact, to take a rather simplistic approach to the social model. In order to apply the social model – in other words to identify the adjustments and supports that are required to enable equal access and opportunities – we need to articulate how our bodies are affected by impairment or long-term health condition. It isn’t a question of handing over assessment and treatment to the medical profession but of identifying what our additional requirements are – some of which will involve access to appropriate medical treatment, some of which will involve addressing other types of barriers. These barriers include, for example, changing working conditions in acknowledgement of low energy levels, experience of pain or fluctuating levels of mental health, as well as the more easily recognised barriers of physical access for wheelchair users.
The point is that, as long as we don’t acknowledge, and incorporate, the experience of our bodies into the social model, we won’t be able to demand the changes which will liberate us.
For example, a common criticism is that a social model approach to employment rights and to support doesn’t address the needs of someone with significant mental health difficulties, or chronic fatigue syndrome. Such an assertion is based on a misunderstanding of the social model but it isn’t surprising because we often have not gone far enough in identifying the changes that need to be made if we are to address the barriers experienced by people with such experiences. Properly addressing those barriers means a fundamental challenge to how paid work is organised, and indeed a challenge to what ‘work’ is. But in order to identify what adjustments are required to accommodate people with a long-term health conditions, we have to open up spaces which enable the articulation of the experiences of our bodies.
There has always been a tension between those who want to only talk about barriers, and those who want to connect the identification of barriers with our experiences of impairment and/or illness. In the late 1970s and 1980s, this tension was played out in the debates between the Union of the Physically Impaired against Segregation and the Liberation of Network of People with Disabilities. UPIAS focussed on developing the theoretical coherence of the social model, insisting that the focus had to be on disabling barriers (see Campbell and Oliver, 1996, Disability Politics: Understanding our past, changing our future).
The Liberation Network on the other hand, influenced by feminism, attempted to incorporate the politics of the personal into the social model. They pointed out that, unlike other forms of oppression, being disabled is “often an additional drain on the resources of the individual, i.e. it is not inherently distressing to be black, while it may be to suffer from painful arthritis” (In From the Cold, June 1981).
Ten years later, in 1991, I wrote how this struggle to incorporate the personal into the social model was continuing – “In our attempts to challenge the medical and the ‘personal tragedy’ models of disability…we have sometimes tended to deny the personal experience of disability. Disability is associated with illness, and with old age (two thirds of disabled people are over the age of 60), and with conditions which are inevitably painful.”
And Liz Crow, while stressing in 1996 how liberating the social model has been, also went on: “The experience of impairment is not always irrelevant, neutral or positive. How can it be when it is the very reason used to justify the oppression we are battling against? How can it be when pain, fatigue, depression and chronic illness are constant facts of life for many of us?”
The crucial point is that we need to take ownership of the experiences of our bodies instead of leaving it to others. If we don’t articulate what our requirements are which result from the impact of impairment and/or illness we cannot hope to either get the adjustments we need, or ultimately challenge disabling public attitudes which treat such experiences as tragic at best and, at worst, as manifestations of personal inadequacies and/or of a life not worth living.
We do need to avoid using the kind of language which invites people to feel sorry for us, which emphasises our ‘vulnerabilities’. In campaigning against the punitive nature of current welfare reforms, we mustn’t forget that we want the right to equal access to employment opportunities. What is wrong is the assumption that a failure to gain paid work is a failure of ‘motivation’. What is wrong is systems to determine eligibility which do not measure disabling barriers, but which instead force people into emphasising how ill or impaired and ‘vulnerable’ they are in order to get support.
We need to keep pointing out that ‘vulnerability’ is socially constructed, created by lack of support and by abusive attitudes and behaviours. Most importantly, we need a fully developed social model which enables us to articulate the experience of our bodies so that we can identify the barriers to be removed and the support that we require.
Current activism by disabled people is a reflection of how far we have come in changing how disabled people view themselves. Those of us who were campaigning for disability equality 30 years ago should be proud of the current generation of campaigners who are continuing the struggle. They are building on what has gone before, using new methods of campaigning which weren’t open to us. I for one am very grateful for what they are doing.