Thursday, 12 September 2013

Welfare reform and the social model of disability



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 thatCreating 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.

11 comments:

  1. clear analysis.
    the point about having to spend time talking about what you can't do [or even filling the forms in] with no support like you'd have with a health care professional is very pertinent. It's a miserable experience.

    How do you get people to stop doing the "poor you thing" but also get the assistance required to do things? I had some work accepted for a conference and I am pleased to say that the technical team were very helpful and bought uv filters for the lights.[I have photosensitivity] It was the first time that I faced having to deal with people/institutions over this and they were very helpful. I think my clarity and openness helped, no apologising etc.

    I hang in the murky land of is it illness or disability.

    Like the point that failure to gain work seen as a failure in motivation. I'm on the work programme but it seems no one really knows exactly what I am supposed to be doing, but they are there to help me...Help me with what? And in a very inaccessible building

    Language is important

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  2. One of the things I like about the social model is that there isn't an illness/disability dichotomy, or even an illness/impairment dichotomy. The only reason it wouldn't be impairment is if it's short term (and interpretations of that vary).

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  3. Thank you for this post. I agree that sickness vs disability is a false dichotomy. I have been sick with ME/CFS for twenty five years and it has involved being a wheelchair user as well as needing total round the clock personal care at times. It's absurd, and hurtful, to be dismissed as not a proper disabled person by those who want to separate the two.

    I also agree that people like me need to embrace the Social Model to better articulate our need and desire for inclusion in society.

    I would also like people to understand that there are degrees sickness. For some people the struggle for "inclusion" will involve being able to pay for a cab to visit a relative once a month. Or support with internet access so they can participate online. Some people with ME can work if their hours are part time and flexible to accommodate fluctuations. But work may simply not be realistic for the more severely affected who battle just to wash and feed themselves every day.

    It is for these people that Sue Marsh and Kaliya Franklin are fighting. Theirs is nothing less than a battle for sick people's livelihood because social security reforms really are taking away people's ability to survive. I find it very sad that some of the disability community see this as treachery to the Social Model and view our battle with social security as degrading.

    We all share the same goals of fulfilling our potential. We all need food and shelter as a starting point from which to participate in society. Disabled people who are fortunate enough to be able to work - and I appreciate they may have fought hard for that right - need to check their privilege before condemning those who can't work because they may fight just as hard in the shadows to survive and create meaning in their lives, yet never attain the dignity that paid work brings.

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  4. Great article Jenny, thanks. I’m going to say much the same in a slightly different way.

    Simplistically, the Social Model is, in my mind, a tool for social change which shifts the locus of responsibility for 'disability' off the shoulders of individuals and onto society as a whole, making us all responsible for transforming this disabling society into an enabling and inclusive society in which we can enjoy the same rights and opportunities as non-disabled people.

    The associated concept of Independent Living provides a practical framework for identifying and addressing the environmental, institutional and attitudinal barriers that our flawed methods of organising society add *on top of* the impact of individual impairments and chronic health conditions...social barriers which for many of us are the main disabling factor in our lives.

    The Social Model is one model amongst many which serve different purposes. The Medical Model has its place, in a GP's surgery, a consultant's office or an A&E ward etc. However, it has a narrow focus on the body & mind, and problems arise when it's applied outside of health settings, such as in assessing eligibility for social security or social services provision, as highlighted above.

    When I visit a health professional I want them to look at me through the lens of the Medical Model, diagnose the symptoms I'm presenting and, if possible, prescribe something that will address the causes and help me to feel better, physically, emotionally or mentally. I'd also like them to think about whether my health could be improved by removing any social barriers which I may be experiencing, though most often they don't.

    Similarly, if I recognise that I'm disabled primarily by the social barriers I experience *on top of* the impact of my impairment or chronic health condition, then the Social Model and Independent Living are the tools I need to bring about social change.

    In my opinion, it's vital that we develop a shared understanding of the Social Model of Disability and consistently use the right language to communicate our concerns to those who can help us to transform society in the way that we need it to be transformed.

    Let's hope this discussion, and others that are taking place, such as Breakthrough UK's recent blog post: http://bit.ly/BreakthroughDPM and DPAC's Manifesto can help us agree a theoretical basis upon which to build a stronger and more politically mature disabled people's movement to help us withstand and challenge the growing oppression we're being subjected to.

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  5. Thank you Jenny - I get it in a way I dont think i have before. Very often people use language and assumptions that almost dictate to people how they should or must feel, speak think. You havent at all, but have contextualised in a way that makes sense.

    Many people get sick I know I did, but didnt percieve that as having an impairment or even as a disabled woman. I stumbled on this stuff via twter, facebook and getting invovled in spartacus etc.

    Many people start where they start, when we get into a place where as you say how we use language is vital to aid understanding.
    Each generation must pick up the gauntlet and build on what has gone before, a bit like feminism - I dispair at times that young women dont always see feminism as postive or even think much about it as they take for granted the rights and freedoms hard won by others. We are not there with disability at all, but perhaps the recent welfare reform has bought the open more of the injustice than before.

    I am ever hopefull we will get there, the more we are visible in society the more we are heard, the more power we have and influence over decisions.

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  6. I don't get it. To me, this is a confused analysis which is fatally flawed by a reliance on the crude social model as perpetrated by Oliver et al. Maybe I have just misunderstood. Here's my thinking:
    1. Yes, barriers in society are disabling, and all right thinking people agree that these should be dismantled. You don't have to support the strong social model to accept this position.
    2. Dismantling barriers will enable more people to work.
    3. Flexible working will enable more people to work.
    4. However, despite steps 2 and 3, many people will not be able to work, because of their impairments not because of barriers or oppression. They are in pain, they have no energy, they cannot relate to people for some or all of the time.
    5. Others will only be able to work part time.
    6. We need a welfare system which a) meets the extra costs of having an impairment or illness - regardless of income - and b) supports people who because of illness or impairment cannot work or cannot work enough hours to have a decent standard of living.
    7. To me, that proposed welfare system is not based on charity or paternalism but on solidarity. Marx said "from each according to ability, to each according to need". All human beings, all citizens, should be able to live a decent life, regardless of how impairment or disabling barriers affect their lives.
    8. I see no difference between illness and impairment, short term or long term. There are lots of different sorts of health conditions which affect people in different ways, sometimes making it impossible for them to compete in any imaginable labour market.

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    1. Hi Tom, I don't disagree with anything in your comment. In fact, it seems you've just restated my view. Of course, there will always be some people who cannot earn a living through selling their labour and our social security system needs to ensure that they nevertheless can have a decent standard of living and that they are valued by our society. And this does not contradict the relevance of the social model of disability at all. The problem we currently face is the focus on paid employment as the only passport out of poverty and the assumption that if you cannot 'work' then you have no value to our society (and this is a major disabling barrier). We need a society which takes pride in having a social security system based on solidarity and which delivers "from each according to ability, to each according to need" - as you say. I am at a loss as to how you think what I've written contradicts this position.

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  7. I'm trying to add a comment here on behalf of CarerWatch and Pat's Petition. That we think the Social Model needs to be taken forward. That a lot of sick and/or disabled people can't compete on a level playing field with other workers in a competitive, flexible labour market. That this is nothing to be ashamed about or a question of tragedy or needing pity.

    Disabled people want to work and they should be able to despite in some cases not being as competitive. The competitive labour market is a socially constructed concept and it seems in the near future that society has decided it wants to run using this concept. Unfortunately it provides a structural barrier to full inclusion in the workplace for disabled people. The Social model requires that the competitive nature of the market needs to be addressed and the barrier overcome.

    Government could intervene with quotas or subsidies. Employers could take responsibility for employing disabled people and giving them opportunities which might not be the most commercial decision but should lead to approval by customers like the Fair Trade campaign.

    It shouldn't be left to disabled people to overcome this barrier. They shouldn't have to deny that their disability leaves them residual difficulties at work - they should be proud to embrace this situation and still work. And employers and the government should be proud to make this happen.

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    1. Thanks Frances, I think we're basically saying the same thing - and it's important that we don't fall for the government/media attempts to separate us into 'deserving' and 'undeserving'. And also, as you demonstrate, that it's us who know what needs to be done to address the barriers we face - not those who have no idea what it is like to live with impairment and/or illness.

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  8. Currently they seem to divide disabled people in to can work and can't work. This is a false dichotomy. Some disabled people can compete on equal terms - of course they can. And sadly perhaps some people can't work and support themselves and need lots of opportunities for permitted work and voluntary activity.

    But many fall in to an intermediate group. They can't compete on equal terms in a highly competitive job market. This doesn't mean they can't work. It means they need a third intermediate group without sanctions, time limits, mean tests where they can be safe and secure while the government, employers and disabled people work out the solutions to this situation.

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