Social Policy & Administration issn 0144—5596Vol. 31, No. 1, March 1997, pp. 54–60

Care or Empowerment? A Disability Rights Perspective

Jenny Morris

Abstract

This paper challenges the notion of “care”, arguing that people who need support in theirdaily lives have been constructed as “dependent people”. Instead, the author argues, if wewant to empower people we must learn from the Independent Living Movement, from thepeople who struggled against segregation and insisted that access to personal assistanceover which they have control is a civil rights issue. The paper takes issue with ClareUngerson’s perspective on the new direct payments legislation. This legislation is animportant stage in the achievements of a civil rights movement and social researchers havea moral responsibility to collaborate with this movement in any work which they developon issues which are not of mere academic interest but which concern people’s rights tochoice and control in their lives.

Keywords

Community care; Direct payments; Independent living; Disabled people; Informalcarers; Young carers

It is my contention in this paper that the only way to empower disabled peopleis to throw off the ideology of caring which is a form of oppression and anexpression of prejudice.

Empowerment means choice and control; it means that someone has thepower to exert choice and therefore maximise control in their lives (alwaysrecognising that there are limits to how much control any of us have over whathappens in our lives). Care—in the second half of the twentieth century—hascome to mean not caring about someone but caring for in the sense of takingresponsibility for. People who are said to need caring for are assumed to beunable to exert choice and control.

One cannot, therefore, have care and empowerment, for it is the ideologyand the practice of caring which has led to the perception of disabled people aspowerless.

Over the last 15 years or so, researchers, social services professionals andpoliticians have defined family members and friends who provide help to older

Address for Correspondence: Jenny Morris, 101 Calabria Road, London, N5 1HX.

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and disabled people as “carers” and those they “care for” as “dependants”. Inthe many studies of “informal carers” the role of “caring” has been defined asa “taking charge of” the person who needs practical assistance (Graham 1983:13) and the voices of those “cared for” have not been heard at all. In theprocess, the rights of disabled and older people to adequate support whichwould give them choice and control in their lives has been obscured (Morris1991, ch. 6, Morris 1993, ch. 3).

At the same time, carers as a pressure group developed from being a self-help, grass-roots organisation with the aim of giving women the support andconfidence to refuse to act as unpaid helpers, into a professional, nationalorganisation, funded by the government, whose aim is to establish informalcaring as a “career” with a carers’ income, protection of pension and otherbenefits (Morris 1993: 31–40). In so doing, campaigners, together with theresearchers in this field, have colluded with the government’s position thatpublic resources will never be adequate to provide the support needed by olderand disabled people and their insistence that “care in the community mustincreasingly mean care by the community” (Department of Health 1981,para. 1.9).

The identification of children as “carers”, or “young carers” is only thelatest stage in a debate which has played a significant part in the developmentof government policy and social services practice regarding the supportneeded by disabled and older people living in their own homes. The researchstudies of, the campaigning on, and the media interest in “young carers” havetended to repeat two things which were common to the earlier debate andresearch on carers generally. First, they have defined and named a role(“young carers”) which, until the children and young people came intocontact with researchers or professionals, was not how they describedthemselves. And second, researchers, campaigners and journalists alike havedefined the main policy issue to be that of providing services to “young carers”which would ease the “burden of caring”.

The damage that this does is illustrated by the story of one woman whocame on a “rights” course which I recently ran. She needs practical assistancein her home—which as a disabled person she is entitled to under the 1970Chronically Sick and Disabled Persons Act. Her child has been providing thisassistance, yet when she approached social services about an assessment of herown needs for help, they referred her to the children and families section todeal with the situation because they identified her child as a “young carer” andtherefore as a “child in need”. A judge has recently granted leave to go tojudicial review to a mother in a similar situation, where her rights under the1970 Act have been ignored and her child has been identified as a “youngcarer”.

Both research and the recent development of Young Carers Projects havebeen based on prejudicial assumptions about disabled parents, and a failure totackle the real problem—which is that many disabled parents are not gettingthe assistance to which they are entitled. In the media, academic andprofessional representations of “children as young carers”, it is possible todistinguish disabling attitudes, and these need to be replaced with a disabilityrights perspective (see box 1).

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Box 1

Representations of “children as young carers”

Disabling attitude Disability rights perspective

People who need help with the phys-ical tasks of daily living are dependent

Independence is not about doing ev-erything for yourself, but about havingcontrol over how help is provided.

If your child helps you put your shoeson, this involves a reversal of roles—you have become the child, andyour child becomes your parent.

The need for help with daily livingtasks does not undermine your abilityto love and care for your child.

We need to recognise the role of“young carers” so that we can supportthese children in their “caring respon-sibilities, experiences and needs”.

Disabled parents should not have torely on our children for help as we havestatutory rights to “practical assi-stance in the home” and to the adapta-tions and equipment we require.

As mentioned above, however, the debate on “young carers” is only themost recent example of a more general issue. In fact, for more than 20 years, acivil rights battle has been waged alongside the state’s concern that familiesshould look after their individual members. On the one hand, the state’sfinancial concerns are couched in terms of what Margaret Thatcher termedpeople’s “personal moral responsibility” to “care for their own near and dear”.On the other hand, we have a civil rights movement which stresses thatenforced dependency on a relative or partner

is the most exploitative of all forms of so-called care delivered in oursociety today for it exploits both the carer and the person receiving care.It ruins relationships between people and results in thwarted lifeopportunities on both sides of the caring equation. (Brisenden 1989: 10)

For almost 20 years now disabled people have campaigned for a change intheir relationship with the welfare state. They have campaigned for anentitlement to resources delivered in a way which would protect their humanrights and promote their civil rights. While the rhetoric of “user involvement”and “empowerment” contained within the Policy Guidance on implementingthe NHS and Community Care Act, 1990, has been very useful, it is theentitlements conferred by two earlier pieces of legislation which are actuallymore important. The Disabled Persons Act, 1986, gives disabled people (ofwhatever age) the right to an assessment of their needs for the things coveredunder Section 2 of the Chronically Sick and Disabled Persons Act, 1970. Theseinclude practical assistance in the home, and aids, adaptations and equip-ment. Interestingly, Clare Ungerson’s paper (see above, p. 45) echoes the lack

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of awareness amongst many professionals of these rights and duties.For years the 1970 Act was one of the most unimplemented pieces of

legislation in the history of this country. Now, because of increasingknowledge, confidence and expectations amongst disabled people there aremore and more challenges to local authorities’ failure to carry out theirstatutory duties. The Court of Appeal’s recent ruling (June 1996)—the“Gloucestershire Judgement”—marked a turning point (or from the localauthorities’ point of view a crisis point) in that the Court ruled that level ofresources could not be taken into account at the stage either of assessing need,or of deciding whether to meet the need. If this is upheld by the House of Lordsit will be the most empowering development ever in the relationship betweendisabled people and the welfare state.

In parallel with struggles over the 1986 and 1970 Acts, which are aboutaccess to this part of the welfare state, disabled people have developed new waysof using resources which give more choice and control than the traditionalmethods of residential provision and local authority-run community services.The history of direct payments, or cash grants which enable someone topurchase the assistance they need, is a long one, and is particularly interestingin the context of the relationship between the social security system and thesystem of assessment and services controlled and delivered by social servicesauthorities. However, the key players have been disabled people, who wouldpreviously have been incarcerated in institutions but who have insteaddemonstrated how they can live independently by employing personalassistants to provide the help they need.

Any work on direct payments and the labour market, of the kind referred toby Clare Ungerson in her paper, should be informed by the work and actionwhich the Independent Living movement has developed over the last 20 years.It is unfortunate that her paper has taken the work of another researcher(myself) and substituted it for an understanding and acknowledgement ofachievements of the Independent Living movement. This is deeply insulting tothe people whose social action and social theory have, in promoting theirhuman and civil rights, changed the whole way that we think about disabilityand community care.

Perhaps, therefore, it would be useful to remind ourselves of the history ofthat movement and, in particular, its involvement in the bringing about ofdirect payments legislation.

It was in the 1960s that disabled people who were incarcerated in residentialhomes started to agitate for more control over their lives and to articulate asocial theory (the social model of disability) to support what became acampaign for civil rights. The constitution of the Union of the PhysicallyImpaired Against Segregation, founded in 1974, stated:

The Union aims to have all segregated facilities for physically impairedpeople 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 usto gain the maximum possible independence in daily living activities, toachieve mobility, undertake productive work, and to live where and how

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we choose with full control over our lives. (Disability Challenge, 1, 1981)

Individuals like Paul Hunt, Peter Wade, Phillip Scott, John Evans, Liz Briggs,Maggie Hines and Ken Davis put this new way of seeing themselves intoaction by arguing that the money which health and social services authoritieswere spending on segregating them from society would be better spent onsupporting them in their own homes, enabling them to participate in theircommunities in the way non-disabled people take for granted.

The struggle for direct payments has been a struggle against segregation: toparaphrase Vic Finkelstein, it has been a struggle against a situation wherenon-disabled people have made a living, won awards, received medals andbeen elevated to the House of Lords, as a result of their work to systematicallyremove disabled people from their communities. Hopefully, we do nowrecognise that there is “something profoundly undemocratic” about such asituation (Finkelstein 1991: 19).

When the disability movement finally won the argument for directpayments, the government set up a Technical Advisory Group, first to adviseon the writing of the legislation, and now to advise on the guidance to be issuedto social services departments concerning its implementation. The BritishCouncil of Organisations of Disabled People, RADAR and the DisablementIncome Group are key members of this Technical Advisory Group. They havebeen scrutinising the way that the Independent Living Fund set up barriers todisabled people being good employers. Department of Health officials havebeen going round the country looking at Centres for Independent Living andlocal support groups to see what kind of support and training enables people tobe good employers. As a result of this, it is likely that the guidance will tellsocial services authorities to set up personal assistance support schemes andthat direct payments must include an amount for employers’ costs.

The direct payments system (particularly if it is underpinned by personalassistance support schemes utilising disability organisations and peer support)undermines the position of social services managers—because the disabledperson, and their peer supporters, are doing the job (of recruiting, employing,training, managing a budget) which a home care organiser, senior caremanager etc. would otherwise be doing. In spite of the emphasis given in ClareUngerson’s paper to the practice of paying cash in hand, most people whoemploy personal assistants don’t, and won’t, do this.

Nevertheless, it is likely that some people who use personal assistants willcontinue to tap into the informal labour market, as Clare Ungerson describes.This is no different from the situation of non-disabled people who are in aposition to purchase practical assistance, in the form of cleaning, childmind-ing, and so on. Various estimates of the informal labour market put it atbetween 5 and 10 per cent of GDP. How many people pay someone to do theirhousework, and how many pay cash in hand? Those of us who do so may thinkof ourselves as good employers: we may pay at or above the local “going rate”,some of us may pay sick pay, bank holidays and holidays (I suspect more willnot), but most of us don’t deduct tax and national insurance or pay theemployers’ national insurance contribution. In fact, most of us would find itdifficult to get a cleaner if we insisted on anything other than a “cash in hand”

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relationship. Does this mean that we are exploiting these low-paid women?The answer is that probably some people experience poor working conditions,including very low wages, and others don’t. As in the formal labour market, avariety of factors will determine the relationship between employer andemployee, including the nature of local supply and demand and considera-tions more difficult to measure, such as the personalities involved.

The situation within the market for cleaners, or childminders, or otherforms of personal and practical assistance is similar to the market for PersonalAssistants for disabled people. The one key difference is that employers in thisinstance are people who experience prejudicial attitudes. One of the distin-guishing features of prejudice is the existence of stereotypes: set ideas heldabout the individuals in the group concerned. Disabled people confront twomain stereotypes: one is of being dependent and grateful; the other is of beingdemanding and undeserving. Since people who have cash to pay for theassistance they need are no longer dependent and grateful, they can only beseen as demanding and undeserving and this stereotype seems to be influencingsome people’s responses to the implementation of direct payments.

Disabled people are trying to break down these stereotypes and establishtheir status as citizens. This means changing their relationship with the state.When the allocation of resources was placed in the hands of social servicesorganisations and those working for them, they chose to spend large sums ofmoney on segregated provision—which meant that disabled people had to liverestricted and impoverished lives that the professionals concerned would neverhave chosen for themselves.

Moreover, even when the resources were allocated to so-called communityprovision they were spent in ways which prevented disabled people doing thethings that non-disabled people take for granted. For example, instead ofspending money to help someone attend college, go to the cinema or pursueother leisure activities, visit friends, family and so on, money was spent onbuilding Day Centres where people were and still are bused every day to do thekind of things that other people think are good for them.

Some people have political objections, or at least misgivings, about whatClare Ungerson has called a shift from a service delivery system to a cashdelivery system. We do need to be wary of schools of thought which turnpeople who need support in their daily lives into consumers who must survivein a market place where it is every man for himself. But we also need to beaware of the two reasons why the state has previously supported a servicedelivery rather than a cash payment system. The first is that people who needhelp in their daily lives were/are considered to be unable to “look afterthemselves” in the intellectual as well as the physical sense. Instead theywere/are assumed to need a professional group, social workers, to determinewhat is best for them; and second, it was feared that it would be too expensiveto introduce a cash payment system, thus reaffirming the social worker’s keyrationing role.

To support a system in which the individual who needs the help has thepower to determine how that help is delivered is not to support an individualistright-wing agenda. Rather, it is about promoting collective responsibility forprotecting individual rights. Direct payments are one way of doing this. The

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child benefit system is a form of collective provision for children, yet it is asystem of cash payments made to individuals. I wonder how many mothersspend their child benefit in parts of the informal economy or on goods andservices in the formal economy made or delivered by low-paid workers. Yetpresumably Clare Ungerson would not wish to use this to question the value ofthe child benefit system.

The culture of social services is changing. We are moving away from arelationship dominated by the attitude that professionals know best howinadequate people should be dealt with. We are increasingly seeing challengesto the perception of older and disabled people as “dependents and theircarers”. The architect of the 1990 community care legislation made it veryclear that enabling people to live in their own homes in the community was tobe built on the unpaid work of those, mainly women, who had personalrelationships with people who needed help. Yet the policy guidance whichaccompanied the Community Care Act said very clearly that “the preferenceof carers should be taken into account and their willingness to continue caringshould not be assumed”. The new Carers Act—if implemented in a way whichrecognises relationships between people rather than constructing them as“carers and their dependants”—will further promote the human rights of boththose who need help in their daily lives and those with whom they havepersonal relationships.

The new system of direct payments—with all its imperfections, whichinclude the fact that, at the moment, it is not to be applied to people over theage of 65—is an important stage in the achievements of a civil rightsmovement. I would argue that social researchers have a moral responsibilityto collaborate with this movement in any work which they develop on issueswhich are not of mere academic interest but which concern people’s rights tochoice and control in their lives.

References

Brisenden, Simon (1989), A charter for personal care. Progress, 16 (DisablementIncome Group): London.

Department of Health and Social Security (1981), Growing Older, HMSO: London.Finkelstein, Vic (1991), Disability: an administrative challenge? In M. Oliver (ed.),

Social Work: Disabled People and Disabling Environments, Jessica Kingsley: London.Graham, Hilary (1983), Caring: a labour of love. In Finch and Groves (eds), A Labour of

Love: Women, Work and Caring, Routledge and Kegan Paul: London.Morris, Jenny (1993), Independent Lives? Community Care and Disabled People, Macmillan:

Basingstoke.Morris, Jenny (1991), Pride Against Prejudice: Transforming Attitudes to Disability,

Women’s Press: London.

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