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Social Policy & Administration issn 01445596

Vol. 31, No. 1, March 1997, pp. 5460

Care or Empowerment? A Disability Rights Perspective


Jenny Morris
Abstract
This paper challenges the notion of care, arguing that people who need support in their
daily lives have been constructed as dependent people. Instead, the author argues, if we
want to empower people we must learn from the Independent Living Movement, from the
people who struggled against segregation and insisted that access to personal assistance
over which they have control is a civil rights issue. The paper takes issue with Clare
Ungersons perspective on the new direct payments legislation. This legislation is an
important stage in the achievements of a civil rights movement and social researchers have
a moral responsibility to collaborate with this movement in any work which they develop
on issues which are not of mere academic interest but which concern peoples rights to
choice and control in their lives.

Keywords
Community care; Direct payments; Independent living; Disabled people; Informal
carers; Young carers
It is my contention in this paper that the only way to empower disabled people
is to throw off the ideology of caring which is a form of oppression and an
expression of prejudice.
Empowerment means choice and control; it means that someone has the
power to exert choice and therefore maximise control in their lives (always
recognising that there are limits to how much control any of us have over what
happens in our lives). Carein the second half of the twentieth centuryhas
come to mean not caring about someone but caring for in the sense of taking
responsibility for. People who are said to need caring for are assumed to be
unable to exert choice and control.
One cannot, therefore, have care and empowerment, for it is the ideology
and the practice of caring which has led to the perception of disabled people as
powerless.
Over the last 15 years or so, researchers, social services professionals and
politicians have defined family members and friends who provide help to older
Address for Correspondence: Jenny Morris, 101 Calabria Road, London, N5 1HX.
Blackwell Publishers Ltd. 1997, 108 Cowley Road, Oxford OX4 1JF, UK and
350 Main Street, Malden, MA 02148, USA.

and disabled people as carers and those they care for as dependants. In
the many studies of informal carers the role of caring has been defined as
a 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 the
process, the rights of disabled and older people to adequate support which
would give them choice and control in their lives has been obscured (Morris
1991, ch. 6, Morris 1993, ch. 3).
At the same time, carers as a pressure group developed from being a selfhelp, grass-roots organisation with the aim of giving women the support and
confidence to refuse to act as unpaid helpers, into a professional, national
organisation, funded by the government, whose aim is to establish informal
caring as a career with a carers income, protection of pension and other
benefits (Morris 1993: 3140). In so doing, campaigners, together with the
researchers in this field, have colluded with the governments position that
public resources will never be adequate to provide the support needed by older
and disabled people and their insistence that care in the community must
increasingly mean care by the community (Department of Health 1981,
para. 1.9).
The identification of children as carers, or young carers is only the
latest stage in a debate which has played a significant part in the development
of government policy and social services practice regarding the support
needed by disabled and older people living in their own homes. The research
studies of, the campaigning on, and the media interest in young carers have
tended to repeat two things which were common to the earlier debate and
research on carers generally. First, they have defined and named a role
(young carers) which, until the children and young people came into
contact with researchers or professionals, was not how they described
themselves. And second, researchers, campaigners and journalists alike have
defined 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 who
came on a rights course which I recently ran. She needs practical assistance
in her homewhich as a disabled person she is entitled to under the 1970
Chronically Sick and Disabled Persons Act. Her child has been providing this
assistance, yet when she approached social services about an assessment of her
own needs for help, they referred her to the children and families section to
deal with the situation because they identified her child as a young carer and
therefore as a child in need. A judge has recently granted leave to go to
judicial review to a mother in a similar situation, where her rights under the
1970 Act have been ignored and her child has been identified as a young
carer.
Both research and the recent development of Young Carers Projects have
been based on prejudicial assumptions about disabled parents, and a failure to
tackle the real problemwhich is that many disabled parents are not getting
the assistance to which they are entitled. In the media, academic and
professional representations of children as young carers, it is possible to
distinguish disabling attitudes, and these need to be replaced with a disability
rights 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 physical tasks of daily living are dependent

Independence is not about doing everything for yourself, but about having
control over how help is provided.

If your child helps you put your shoes


on, this involves a reversal of roles
you have become the child, and
your child becomes your parent.

The need for help with daily living


tasks does not undermine your ability
to love and care for your child.

We need to recognise the role of


young carers so that we can support
these children in their caring responsibilities, experiences and needs.

Disabled parents should not have to


rely on our children for help as we have
statutory rights to practical assistance in the home and to the adaptations and equipment we require.

As mentioned above, however, the debate on young carers is only the


most recent example of a more general issue. In fact, for more than 20 years, a
civil rights battle has been waged alongside the states concern that families
should look after their individual members. On the one hand, the states
financial concerns are couched in terms of what Margaret Thatcher termed
peoples personal moral responsibility to care for their own near and dear.
On the other hand, we have a civil rights movement which stresses that
enforced dependency on a relative or partner
is the most exploitative of all forms of so-called care delivered in our
society today for it exploits both the carer and the person receiving care.
It ruins relationships between people and results in thwarted life
opportunities on both sides of the caring equation. (Brisenden 1989: 10)
For almost 20 years now disabled people have campaigned for a change in
their relationship with the welfare state. They have campaigned for an
entitlement to resources delivered in a way which would protect their human
rights and promote their civil rights. While the rhetoric of user involvement
and empowerment contained within the Policy Guidance on implementing
the NHS and Community Care Act, 1990, has been very useful, it is the
entitlements conferred by two earlier pieces of legislation which are actually
more important. The Disabled Persons Act, 1986, gives disabled people (of
whatever age) the right to an assessment of their needs for the things covered
under Section 2 of the Chronically Sick and Disabled Persons Act, 1970. These
include practical assistance in the home, and aids, adaptations and equipment. Interestingly, Clare Ungersons 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 increasing
knowledge, confidence and expectations amongst disabled people there are
more and more challenges to local authorities failure to carry out their
statutory duties. The Court of Appeals recent ruling (June 1996)the
Gloucestershire Judgementmarked a turning point (or from the local
authorities point of view a crisis point) in that the Court ruled that level of
resources 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 Lords
it will be the most empowering development ever in the relationship between
disabled people and the welfare state.
In parallel with struggles over the 1986 and 1970 Acts, which are about
access to this part of the welfare state, disabled people have developed new ways
of using resources which give more choice and control than the traditional
methods of residential provision and local authority-run community services.
The history of direct payments, or cash grants which enable someone to
purchase the assistance they need, is a long one, and is particularly interesting
in the context of the relationship between the social security system and the
system of assessment and services controlled and delivered by social services
authorities. However, the key players have been disabled people, who would
previously have been incarcerated in institutions but who have instead
demonstrated how they can live independently by employing personal
assistants to provide the help they need.
Any work on direct payments and the labour market, of the kind referred to
by Clare Ungerson in her paper, should be informed by the work and action
which 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 of
achievements of the Independent Living movement. This is deeply insulting to
the people whose social action and social theory have, in promoting their
human and civil rights, changed the whole way that we think about disability
and community care.
Perhaps, therefore, it would be useful to remind ourselves of the history of
that movement and, in particular, its involvement in the bringing about of
direct payments legislation.
It was in the 1960s that disabled people who were incarcerated in residential
homes started to agitate for more control over their lives and to articulate a
social theory (the social model of disability) to support what became a
campaign for civil rights. The constitution of the Union of the Physically
Impaired Against Segregation, founded in 1974, stated:
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, 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 into
action by arguing that the money which health and social services authorities
were spending on segregating them from society would be better spent on
supporting them in their own homes, enabling them to participate in their
communities in the way non-disabled people take for granted.
The struggle for direct payments has been a struggle against segregation: to
paraphrase Vic Finkelstein, it has been a struggle against a situation where
non-disabled people have made a living, won awards, received medals and
been elevated to the House of Lords, as a result of their work to systematically
remove disabled people from their communities. Hopefully, we do now
recognise that there is something profoundly undemocratic about such a
situation (Finkelstein 1991: 19).
When the disability movement finally won the argument for direct
payments, the government set up a Technical Advisory Group, first to advise
on the writing of the legislation, and now to advise on the guidance to be issued
to social services departments concerning its implementation. The British
Council of Organisations of Disabled People, RADAR and the Disablement
Income Group are key members of this Technical Advisory Group. They have
been scrutinising the way that the Independent Living Fund set up barriers to
disabled people being good employers. Department of Health officials have
been going round the country looking at Centres for Independent Living and
local support groups to see what kind of support and training enables people to
be good employers. As a result of this, it is likely that the guidance will tell
social services authorities to set up personal assistance support schemes and
that direct payments must include an amount for employers costs.
The direct payments system (particularly if it is underpinned by personal
assistance support schemes utilising disability organisations and peer support)
undermines the position of social services managersbecause the disabled
person, and their peer supporters, are doing the job (of recruiting, employing,
training, managing a budget) which a home care organiser, senior care
manager etc. would otherwise be doing. In spite of the emphasis given in Clare
Ungersons paper to the practice of paying cash in hand, most people who
employ personal assistants dont, and wont, do this.
Nevertheless, it is likely that some people who use personal assistants will
continue 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 a
position to purchase practical assistance, in the form of cleaning, childminding, and so on. Various estimates of the informal labour market put it at
between 5 and 10 per cent of GDP. How many people pay someone to do their
housework, and how many pay cash in hand? Those of us who do so may think
of 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 will
not), but most of us dont deduct tax and national insurance or pay the
employers national insurance contribution. In fact, most of us would find it
difficult 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 dont. As in the formal labour market, a
variety of factors will determine the relationship between employer and
employee, including the nature of local supply and demand and considerations more difficult to measure, such as the personalities involved.
The situation within the market for cleaners, or childminders, or other
forms of personal and practical assistance is similar to the market for Personal
Assistants for disabled people. The one key difference is that employers in this
instance are people who experience prejudicial attitudes. One of the distinguishing features of prejudice is the existence of stereotypes: set ideas held
about the individuals in the group concerned. Disabled people confront two
main stereotypes: one is of being dependent and grateful; the other is of being
demanding and undeserving. Since people who have cash to pay for the
assistance they need are no longer dependent and grateful, they can only be
seen as demanding and undeserving and this stereotype seems to be influencing
some peoples responses to the implementation of direct payments.
Disabled people are trying to break down these stereotypes and establish
their status as citizens. This means changing their relationship with the state.
When the allocation of resources was placed in the hands of social services
organisations and those working for them, they chose to spend large sums of
money on segregated provisionwhich meant that disabled people had to live
restricted and impoverished lives that the professionals concerned would never
have chosen for themselves.
Moreover, even when the resources were allocated to so-called community
provision they were spent in ways which prevented disabled people doing the
things that non-disabled people take for granted. For example, instead of
spending money to help someone attend college, go to the cinema or pursue
other leisure activities, visit friends, family and so on, money was spent on
building Day Centres where people were and still are bused every day to do the
kind of things that other people think are good for them.
Some people have political objections, or at least misgivings, about what
Clare Ungerson has called a shift from a service delivery system to a cash
delivery system. We do need to be wary of schools of thought which turn
people who need support in their daily lives into consumers who must survive
in a market place where it is every man for himself. But we also need to be
aware of the two reasons why the state has previously supported a service
delivery rather than a cash payment system. The first is that people who need
help in their daily lives were/are considered to be unable to look after
themselves in the intellectual as well as the physical sense. Instead they
were/are assumed to need a professional group, social workers, to determine
what is best for them; and second, it was feared that it would be too expensive
to introduce a cash payment system, thus reaffirming the social workers key
rationing role.
To support a system in which the individual who needs the help has the
power to determine how that help is delivered is not to support an individualist
right-wing agenda. Rather, it is about promoting collective responsibility for
protecting 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 a


system of cash payments made to individuals. I wonder how many mothers
spend their child benefit in parts of the informal economy or on goods and
services in the formal economy made or delivered by low-paid workers. Yet
presumably Clare Ungerson would not wish to use this to question the value of
the child benefit system.
The culture of social services is changing. We are moving away from a
relationship dominated by the attitude that professionals know best how
inadequate people should be dealt with. We are increasingly seeing challenges
to the perception of older and disabled people as dependents and their
carers. The architect of the 1990 community care legislation made it very
clear that enabling people to live in their own homes in the community was to
be built on the unpaid work of those, mainly women, who had personal
relationships with people who needed help. Yet the policy guidance which
accompanied the Community Care Act said very clearly that the preference
of carers should be taken into account and their willingness to continue caring
should not be assumed. The new Carers Actif implemented in a way which
recognises relationships between people rather than constructing them as
carers and their dependantswill further promote the human rights of both
those who need help in their daily lives and those with whom they have
personal relationships.
The new system of direct paymentswith all its imperfections, which
include the fact that, at the moment, it is not to be applied to people over the
age of 65is an important stage in the achievements of a civil rights
movement. I would argue that social researchers have a moral responsibility
to collaborate with this movement in any work which they develop on issues
which are not of mere academic interest but which concern peoples rights to
choice and control in their lives.

References
Brisenden, Simon (1989), A charter for personal care. Progress, 16 (Disablement
Income 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,
Womens Press: London.

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