‘a tremendous pressure to feel useless’: Disability as a Political Problem

The right to a dignified and independent life: Learning from The History of the Disability Rights Movement

Imogen Tyler, March 2016

‘Those who cannot work, such as the sick, aged or unemployed, are subject to a tremendous pressure to feel useless … we reject any view of ourselves as being lucky to be allowed to live’. Paul Hunt, 1966

 

Given the resigination of Iain Duncan Smith as work and pensions secretary, apparently in protest against £4bn of planned cuts to disability benefits – and specifically because he feels that cuts to the Personal Independence Payments (PIP) — which will replace the now defunct Independent Living Fund and Disability Living Allowance (DLA) — are “a step too far” in the Government’s austerity driven welfare reforms, it seems an apt moment to reflect on the history of disability activism which first established the rights of disabled people to a dignified and independent life–rights which while never fully realised are now in total disarray, if not fatally undermined.

As part of a research project on the politics of stigma, I have been revisting the work of the disability activist Paul Hunt (1937 – 1979). In 1966, Hunt edited a collection of essays ‘Stigma: The Experience of Disability’. Composed of essays by 12 disabled people, written to Hunt while he lived in institutional care, this is an extraordinarily powerful and ground-breaking book which documented and reflected on the stigma of living a disabled life in Britain in the 1960s. Hunt’s aim was not ‘sentimental autobiography’ and certainly not ‘charity’ (which he abhored) but on the contrary, was an attempt, drawing in particular on the US civil rights movement, to draw on personal experience as a means of jump-starting a movement for social and political change. ‘Stigma’ offered an insight into myriad problems faced by disabled people — poverty, discrimination, physical barriers, limited access to information about rights and services, deprivation of relationship and sexual rights, denial of housing, lack of access to medical services. Hunt opens his own brilliant essay in this volume with the words:

‘All my adult life has been spent in institutions amongst people who, like myself, have severe and often progressive physical disabilities. We are paralysed and deformed, most of us in wheel chairs, either as the result of accident or of diseases like rheumatoid arthritis, multiple sclerosis, muscular dystrophy, cerebral palsy and polio. … In these circumstances the most acute questions arise and the most radical ‘answers’ are called for.

In 1972, he wrote a short letter to The Guardian ‘calling for “the formation of a consumer group to put forward the views of actual and potential residents” of residential institutions:

Sir,

Severely physically handicapped people find themselves in isolated unsuitable institutions where their views are ignored and they are subject to authoritarian and often cruel regimes. I am proposing the formation of a consumer group to put forward nationally the views of actual and potential residents of these successors to the Workhouse.

Yours faithfully,

Paul Hunt.

As a consequence of the many responses received to his letter, Hunt joined Disablement Income Group – which had formed in 1965 to campaign for increased state benefits for disabled people – specifically in the form of a basic and just disability income. As Vic Finkelstein, the disability activist, scholar and writer, reflected:

The emergence of DIG was an early symptom of the shifting focus away from our “defective” bodies, which we had been conditioned into believing was the sum total of our misfortune, and onto the provision of benefits to enable a more equitable lifestyle in the community regardless of type of impairment or where this was acquired. (Finkelstein, 2004:7)

In 1974, with Finkelstein, Hunt set up The Union of the Physically Impaired Against Segregation (UPIAS). It was UPIAS who crafted the “social model of disability”, arguing that disability is fundamentally a political problem –people are disabled by society, not by their bodies (impairments).

While the impact and history of the UPIAS is contested (some critics argue it was too political –it was Marxist in leanings– and also exclusionary in terms of its focus on people with physical disabilities), there is no doubt that it changed the lives of disabled people across the world–and in the context of the current rolling back of disability and welfare rights its demands deserve a new hearing.

Hunt ‘escaped’ from institutional care in 1970, got married, raised a family, and all the while continued to work as a leading activist for disability rights until his death.

Below is an edited extract from the manifesto of the The Union of the Physically Impaired Against Segregation, from 1974. It is well worth a read.

UNION OF THE PHYSICALLY IMPAIRED AGAINST SEGREGATION

AIMS
The Union aims to have all segregated facilities for physically impaired people replaced by arrangements for us to participate fully in society. These arrangements must include the necessary financial, medical, technical, educational and other help required from the State to enable us to gain the maximum possible independence in daily living activities, to achieve mobility, to undertake productive work, and to live where and how we choose with full control over our lives.

POLICY STATEMENT

1. DISABILITY AND SEGREGATION
Britain today has the necessary knowledge and the advanced technology to bring physically impaired people into the mainstream of life and enable us to contribute fully to society. But instead of the Countrys resources being concentrated on basic human problems like ours, they are frequently misspent, for example, on making sophisticated weapons of destruction, and onprojects like Concorde and Centre Point. So despite the creation today of such an enormous capacity, which could help overcome disability, the way this capacity is misdirected means that many physically impaired people arestill unnecessarily barred from full participation in society. We find ourselves isolated and excluded by such things as flights of steps, inadequate public and personal transport, unsuitable housing, rigid work routines infactories and offices, and a lack of up-to-date aids and equipment.

2. There are a few individual examples of severely impaired people being able to overcome many of these barriers by the use of sufficient resources in the right way. They prove that integration is possible. But as a group we are still often forced to put up with segregated and inferior facilities. We get sent to special schools, colleges or training centres. We are systematically channelled into segregated factories, centres, Homes, hostels and clubs. If we do manage to become mobile, it is often in antiquated tricycles or specially labelled transport. All these segregated forms of help represented progress in years past. But since the means for integration now undoubtedly exists, our confinement to segregated facilities is increasingly oppressive and dehumanising.
3. RECENT ADVANCES
The struggles of disabled people and their relatives and friends, together with advances in technology and medical science, have it is true resulted in larger numbers of us participating more fully in ordinary society in recent years. Some of the barriers which segregate us have been partially overcome or dismantled. So a good proportion of people with paraplegia, or those who are blind, for example, have become able to work and to lead relatively active lives which would have been hard to imagine less than 50 years ago. These developments have meant a positive shift in the attitudes of some able-bodied people as they have responded to our presence amongst them.

4. Such advances show that general attitudes can be changed for the better. They also point to our increased participation in society as the principal means for achieving further change. But they cannot blind us to what remains the basic reality of the position of disabled people as a group. This society is based on the necessity for people to compete in the labour market in order to earn a living. To the employer of labour, the physically impaired are not usually as good a buy as the non-impaired. We therefore end up at or near the bottom of this society as an oppressed group.

5. LOW BARGAINING-POWER
When we do succeed in getting employment, our comparatively low productivity means that we have low bargaining-power when it comes to negotiating decent treatment and facilities. Our position is similar to that of many people who are middle-aged or elderly, who have had break-downs, or are mentally handicapped, black, ex-prisoners, unskilled workers, etc. We are usually among the first to lose our jobs and be cast on the scrap-heap when it suits the needs of the economy. If we are lucky we may bedrawn in again, to do the worst paid work, when business starts to boom once more. If we are unlucky, then we could face a lifetime on the degrading, means-tested poverty line. If we are very unlucky we may be consigned to a soul-destroying institution.

6. INSTITUTIONS – THE ULTIMATE HUMAN SCRAP-HEAPS
The union of the Physically Impaired believes that the reality of our positionas an oppressed group can be seen most clearly in segregated residential institutions, the ultimate human scrap-heaps of this society. Thousands of people, whose only crime is being physically impaired, are sentenced tothese prisons for life -which may these days be a long one. For the vast majority there is still no alternative, no appeal, no remission of sentence for good behaviour, no escape except the escape from life itself.
7. The cruelty, petty humiliation, and physical and mental deprivation suffered in residential institutions, where isolation and segregation have been carried to extremes, lays bare the essentially oppressive relations of this society with its physically impaired members. As in most similar places,such as special schools, there are some staff and volunteers doing their best to help the residents. But their efforts are systematically overwhelmed by the basic function of segregated institutions, which is to look after batches ofdisabled people – and in the process convince them that they cannot
realistically expect to participate fully in society and earn a good living. This function was generally appropriate when special residential institutionsfirst came into being, since in the competitive conditions of the time many physically impaired people could not even survive without their help. But now it has become increasingly possible for severely impaired people notjust to survive, but also to work and become fully integrated, the need for segregated institutions no longer exists in the way it did. They have become seriously out of step with the changed social and technological conditions of Britain today.
8. SUPPORT FOR RESIDENTS STRUGGLES
The Union of the Physically Impaired regards the neglected issues of institutions as of crucial importance in the field of disability. We therefore place great emphasis on supporting the struggles of residents in existing residential institutions for better conditions, for full control over their personal affairs, and for a democratic say in the management of their Home, Centre or Unit. The Union strongly opposes all attempts by the authorities to impose restrictions on visiting; to fix times for getting into and out of bed;to limit residents freedom to come in and go out when they wish; to enforce medical and nursing opinions, or to transfer residents to other institutions against their will.

9. The Union sees a need for a Charter which will focus on basic rights often denied when people are dependent on others for personal needs. Disabled people living in institutions will be offered help if they wish to organise locally in defence of their rights. The Union will develop an adviceand mutual-help service to assist with negotiations, formation of residents committees etc. When asked, we will mobilise support and publicity on a national basis for those involved in particular struggles.
10. ALTERNATIVES NEEDED
The Union is opposed to the building of any further segregated institutions by the State or by voluntary organisations. We believe that providing adequate services to people in their own homes is a much better use of resources. We also call urgently for the provision of non-institutional alternative housing, for example, along the lines of the Fokus scheme inSweden, which makes genuine progress towards secure, integrated, and active living for disabled people who need extensive personal help. The Union will try to assist anyone who seeks to move out – or stay out – of aninstitution. But we fully respect the feelings of individuals who regard institutional life as their best solution at the present time. We understand also that some disabled people will disagree with our views on segregation,and we hope that they will organise to put forward their arguments too.
11. REAL CHOICE
The Unions eventual object is to achieve a situation where as physically impaired people we all have the means to choose where and how we wish to live. This will involve the phasing out of segregated institutions maintained by the State or charities. While any of these institutions are maintained at ahuge cost, it is inconceivable that we will all receive in addition the full resources needed to provide us with a genuine opportunity to live as we choose. This point applies not just to residential homes, hospital units,hostels, villages and settlements, but also to other kinds of segregated facilities. As long as there are vastly expensive special schools, colleges and day-centres, heavily subsidised workshops and factories, and separate holiday camps and hotels, there can be no question of sufficient alternative provision being made to ensure that we all have a real opportunity of equal participation in normal educational, work and leisure activities.
12. DISABLEMENT OUTSIDE INSTITUTIONS
Our Union maintains that the present existence of segregated institutions and facilities is of direct relevance even for less severely impaired people whomay expect to avoid having to use them. Those of us who live outside institutions can fully understand the meaning of disability in this society only when we take account of what happens to the people who come at thebottom of our particular group. Their existence and their struggles are an
essential part of the reality of disability and to ignore them is like assessing the condition of elderly people in this society without considering theexistence of geriatric wards.
13. It is also true that the kind of prejudiced attitudes we all experience -other people being asked if we take sugar in our tea is the usual example -are related to the continued unnecessary existence of sheltered institutions.Those who participate us are indicating that they think we are not capable of participating fully and making our own decisions. They are harking back to the time when disabled people had to be sheltered much more, and theyimply that really we ought to be back in our rightful place – that is, a special
school, club, hospital unit, Home or workshop. Physically impaired people
will never be fully accepted in ordinary society while segregated institutionscontinue to exist, if only because their unnecessary survival today reinforces out of date attitudes and prejudices.
14. MEDICAL TRADITION
Both inside and outside institutions, the traditional way of dealing with disabled people has been for doctors and other professionals to decide what is best for us. It is of course a fact that we sometimes require skilledmedical help to treat our physical impairments – operations, drugs and nursing care. We may also need therapists to help restore or maintain physical function, and to advise us on aids to independence and mobility.But the imposition of medical authority, and of a medical definition of our
problems of living in society, have to be resisted strongly. First and foremost we are people, not patients, cases, spastics, the deaf, the blind, wheelchairs or the sick.

Our Union rejects entirely any idea of medical or other experts having the right to tell us how we should live, or withholding information from us, or take decisions behind our backs.
15 We reject also the whole idea of experts and professionals holding forth on how we should accept our disabilities, or giving learned lectures about the psychology of disablement. We already know what it feels like to be poor, isolated, segregated, done good to, stared at, and talked down to – far better than any able-bodied expert. We as a Union are not interested in descriptions of how awful it is to be disabled. What we are interested in, are ways of changing our conditions of life, and thus overcoming the disabilities which are imposed on top our physical impairments by the way this society is organised to exclude us. In our view, it is only the actual impairment which we must accept; the additional and totally unnecessary problems caused by the way we are treated are essentially to be overcome and not accepted. We look forward to the daywhen the army of experts on our social and psychological problems can find more productive work.
16. THE RIGHT KIND OF HELP
We know that as a small, weak, minority group, disabled people cannot achieve a fully human life by their own efforts alone. We need and welcome the help of sympathetic able-bodied people. But the basic problem we faceis our exclusion from full social participation. It follows that this oppressive situation can be put right only by disabled people actually taking a more active part in society. The efforts of professionals and other able-bodied people are therefore really constructive only when they build on and encourage the self-help and activity of disabled people themselves. This is why our energies as a Union will be directed mainly towards discussion and common action with other disabled people. Neither we as a Union, nor able-bodied people, can solve other disabled peoples problems for them. Those problems will be correctly tackled precisely to the extent that we all asdisabled people become involved and active in our own rehabilitation.
17. THE NEED FOR A UNION
Disabled people everywhere are already struggling against their isolation,segregation and other forms of oppression. Every day each of us has to face our own individual problems. And we are now increasingly getting together in groups to tackle more effectively the problems we find we havein common. This is shown by the vast growth of disability organisations in the last 25 years in Britain. Our Union takes this process of coming together a stage further. We are not restricted to one aspect of physical disability(e.g. mobility or incomes), nor to people with one medical diagnosis, nor to
those in one locality. The Union exists simply to offer help to all physically impaired people in the fight to change the conditions of life which oppress us and to realise our full human potential.

Adopted: 03/12/74