On a number of occasions I tried to tell Mike how influential his ideas were in the context of specific policy developments that I was involved in, such as ‘Improving the Life Chances of Disabled People’, which was the first time the UK government formally adopted the social model of disability. But he was very pessimistic about the direction of both disability policy and also about the impact of his own work, and his response each time was to express frustration at the limited nature of any progress - and to advise me not to leave it too long before I retired (he was right about that!).
But Mike Oliver’s work (much of which is available on the online Disability Archive) was important and influential, and it continues to be, particularly in understanding precisely why progress has been so slow. So many people who are critical of current policies affecting disabled people are using a framework and analysis which stems from his work, but this is not always obvious.
Mike wrote "For me, all social theory must be judged on three inter-related elements: its adequacy in describing experience; its ability to explain experience; and finally, its potential to transform experience.“ His writings achieve all three of these elements and, as a tribute to him, I thought I would look at one particular issue of current concern for disabled people and make the links explicit. In so doing, I’ve highlighted what, to me, are some key aspects of the theoretical framework that makes up Mike’s legacy.
Before doing that, however, I think it’s worth reminding ourselves of how the social model has the “potential to transform experience” for individual disabled people (the issue of transforming experience at a societal level is discussed below). I consider myself very lucky that - at the time I became disabled (the early 1980s) - disabled people were increasingly articulating a different way of seeing themselves and which opened up opportunities for collective action to bring about change. Much of this was down to the liberation that the social model of disability offered.
Liz Crow spoke for many of us when she wrote:
My life has two phases: before the social model of disability, and after it. Discovering this way of thinking about my experiences was the proverbial raft in stormy seas. It gave me an understanding of my life, shared with thousands, even millions, of other people around the world, and I clung to it……For years now this social model of disability has enabled me to confront, survive and even surmount countless situations of exclusion and discrimination. It has been my mainstay, as it has been for the wider disabled people's movement. 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 social model of disability not only provides a transformation in the way disabled people have made sense of their lives but it also gave individuals a way of thinking which supported collective action. And often it was reading The Politics of Disablement that enabled them to do this. To take just one example, Sunny Taylor, a young American woman who became involved in protesting disabled people’s right to personal assistance, read Mike’s book and concluded from it that:
Disablement is a political state and not a personal one and thus needs to be addressed as a civil rights issue.……In our society it is not the impairment that is the only reason for dependence; it is our impaired system of social services.
There are many contemporary issues which can best be described, explained and potentially transformed by applying the social theory set out in The Politics of Disablement and other writings, and I may write further blogposts to explore them. Here I’m going to focus on just one: the incarceration of people with learning disabilities and/or autism in Assessment and Treatment Units and the failure of current government policy to enable them, as articulated by Article 19 of the UN Convention of the Rights of Disabled People, “to live in the community, with choices equal to others”.
Mike provided us with the starting point for understanding this - and other aspects of disabled people’s experiences - when he argued that disability is socially produced, both as an individual problem requiring medical treatment and as a social problem. This enables us to move away from the
individualising of the experience, a feature which is so key to the ideology dominating our current politics and the associated social policies.
As he explained, “to say the category disability is produced by capitalist society in a particular form implies a particular world view. Within this world view, the production of the category disability is no different from the production of motor cars or hamburgers. Each has an industry, whether it be the car, fast food or human service industry. Each industry has a workforce which has a vested interest in producing their product in particular ways and in exerting as much control over the process of production as possible.”
We can see today how a whole industry of services and occupations are based on diagnosing and treating people with learning disabilities and/or autism. It is those working within these services who exert control over, not only how they define the problem but also the responses to what they have defined as the problem. The ATU part of this industry has grown up in order to treat the product of ‘behaviour that challenges’. People whose behaviour is so characterised are produced as a social problem by the industry and services which have grown up to respond to their needs and that of their families.
A social model analysis turns the focus from the individual to the context in which they experience their condition. So it is the characteristics of the environment and of support which are identified as a problem, in that they fail to accommodate different requirements associated with, for example, sensitivity to light or noise, or an intolerance of changes in routine, or response to crisis or trauma. Changing the nature of the problem is the first step to acknowledging and respecting the most basic human right to communicate and the fact that, far far too often, our society fails to do this is resulting in incarceration and the most appalling treatment.
As Alexis Quinn, author of Unbroken, told the BBC’s Victoria Derbyshire Show:
“When you are moved, and suffered a crisis, for me my brother died and I had just given birth, and you enter a ward which is by nature a very chaotic place, it’s not your routine, it’s unfamiliar, it’s very sensory-charged, it’s very noisy. Any behaviours that you then subsequently display, autistic behaviours, behaviours to calm yourself down, so it might be pacing, it might be stimming, for example flapping, or something like that, it can be met with force, with restraint, with seclusion….I was locked up in these units [for four years] and my behaviour just got worse and worse and worse until I became what they were describing me to be….I looked insane, my mouth would twitch, my face would contort [because of the drugs].
So Mike’s work enables us to understand the production of a social problem which ATUs are designed to respond to, but his work also helps us understand why, despite much hand-wringing by government and media, people are still admitted and remain in them, sometimes for many years.
We need to understand this because there has been widespread recognition that people should not be kept for years in these institutions and yet little has changed. Since the exposure of what was going on in Winterbourne View ATU, by a BBC Panorama programme in 2011, the issue has not only continued to be highlighted by broadcast media but also by campaigners, and by a number of journalists, newspapers and websites. And government has attempted to respond by setting up a Transforming Care programme with the goal of reducing the numbers of people in ATUs. The first programme started in 2012 and committed to reducing the numbers of people in ATUs by 2015. When this failed, a further programme followed, intended to reduce numbers by March 2019.
There have been arguments about whether such a reduction has occurred - with the data made obscure by the fact that the baseline figure against which progress was to be measured had to be revised because people were ‘discovered’ to be in in-patient settings for whom there were no records. But with well over 2000 people still recorded as in-patients, admissions and delays to moving out continue, and there has been an increase in the numbers of children and young people under the age of 18 admitted to ATUs. The likelihood of significant reductions in the use of such provision by 2023/24 - the government’s latest commitment as set out in the NHS Long Term Plan - is undermined by the fact that new units continue to be built.
Many people with good intentions make promises that things will change, and some try hard to create the conditions which enable people to thrive - though too often this is only possible because of the efforts of family members who are let down by health and social care services. A short BBC documentary about Spencer Kay illustrated so clearly both how responding to someone’s needs enables them to thrive but also how this is often only achieved by family members sacrificing their own needs. Spencer’s family struggled for decades to keep him out of an institution despite inappropriate and inadequate responses by statutory services. As his sister says: "Spencer is gentle when you learn what Spencer needs and work out how he is interpreting the world”.
The NHS Long Term Plan made the commitment that: “local providers will be able to take control of budgets to reduce avoidable admissions, enable shorter lengths of stay and end out of area placements. Where possible, people with a learning disability, autism or both will be enabled to have a personal health budget (PHBs).” But none of these plans tackle the underlying causes of why we have incarcerated people with learning disabilities and/or autism. In order to understand what these are we need to apply Mike Oliver’s analysis of how the production of disability is underpinned by the structures and economics of health and social care.
This is not to say that the historical materialism which was at the heart of Mike’s sociology was an economically determinist position. Rather, as he wrote in The Politics of Disablement: “The point being made here is not that economics determines politics but the more limited one that the politics of social policy is circumscribed by economic considerations”. Since the late 1970s, Britain’s political economy has been dominated by the impact of global capitalism, with governments of all persuasions pursuing policies which expanded opportunities for private capital. One associated social policy was the ‘purchaser-provider’ split introduced in the 1990s within both health and social care which has meant that international finance capital identified profit-making opportunities, resulting in considerable amounts of public money being tied up in purchasing buildings-based services (residential and nursing homes, and private hospitals).
If Clinical Commissioning Groups and social services authorities are to be able to make available the community-based services to enable people to move out of the mainly private institutional provision that people with ‘behaviour that challenges’ are in, there would have to be initial additional funding devoted to community-based services while money was still tied up in institutional provision. However, such a requirement comes up against the political ideology determining the distribution of our society’s economic surplus: as The Politics of Disablement explains “societies which produce very large economic surpluses will almost certainly have established elaborate mechanisms of redistribution; but who gets what amount will be significantly influenced by the ideology underpinning this redistribution process”.
The ideology underpinning the redistribution of our society’s economic surpluses has, since the late 1970s, resulted in the widespread assumption that income taxes must be as low as possible and that taxing wealth is counter-productive. Since 2010 we have had governments whose stated intention is to significantly reduce levels of public expenditure: thus while the Office for Budget Responsibility says the NHS needs a real terms increase of 4.3% per year to keep up with demographic and other changes, funding has only increased by 1.2% per year since 2009/2010; and, although some additional funding has been made available for social care for 2018/19 and 2019/20, official data confirms that this has not made up for the real terms reduction in social care funding since 2010 at a time of increasing demand and costs.
If people currently incarcerated in institutions are to be enabled to “live in the community with choices equal to others”, this requires investment in ordinary houses (not beds in group homes which do not offer ‘choices equal to others’ and which private capital has started to identify as profit-making opportunities). It requires recruitment and training of workers, support to families, and changes in the communities in which people are to live. All of this means additional money needs to be spent upfront before the considerable expenditure on institutional care can be withdrawn.
However, as Mike said, “the politics of social policy is circumscribed by economic considerations”. This means that, not only does government refuse to provide sufficient resources to enable transfer from long-stay hospitals to community living, but also private capital continues to identify opportunities for creating a surplus out of institutional provision. And the dominant political ideology ensures that such surplus remains in the possession of private capital rather than being redistributed for the common good. As Margaret Flynn, who wrote the original report on Winterbourne View, pointed out, that institution was run by a company called CB Care Ltd which was owned by a Swiss-based equity group whose Directors did not pay UK tax.
The current phase of social care policy places an emphasis on community and family support - posed in seemingly progressive language like ‘strength-based assessments’ and ‘community cohesion’. This kind of language obscures the lesson Mike Oliver taught us - that political decisions about how the surplus generated by our economy should be distributed mean that individuals and families are not supported in ways which build and support their strengths or ensure community cohesion. Until we understand that and campaign for the kind of economic and social transformation that Mike envisaged, our society will continue to deny the human rights of far too many disabled people but particularly of those who have the misfortune to be produced as the disability category of ‘people with behaviour that challenges’.