Professional Documents
Culture Documents
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).
Blackwell Publishers Ltd. 1997
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Box 1
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.
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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
Blackwell Publishers Ltd. 1997
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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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