Model of restraint

Are you a social worker, devoting long hours to a stressful job
for not much pay and less thanks? Are you a mother of a young
child, struggling to combine employment with parenting on two
hours’ sleep a night? Are you a commuter spending a large part of
your day on unreliable, overcrowded, filthy trains? Do you need a
new kidney? Sorry. You clearly have enough on your plate. The pain
and discomfort of the operation might tip you over the edge. Your
quality of life is so poor anyway that a new kidney would not
materially improve it.

You may argue that such reasoning is spurious and based on
inaccurate assumptions that you would have corrected, had you been
asked. You might point out that you are not personally responsible
for the organisation and funding of social services, your partner’s
refusal to pull his weight, your employer’s inflexibility or the
state of the railways. Changes are needed to people’s attitudes and
assumptions, the way things are organised and the environment. This
is what disabled people have been saying for years. It is called
the social model of disability.

The recent refusal of a new kidney for a man with learning
difficulties because he “wouldn’t understand” is but the tip of an
iceberg of inaccurate assumptions and spurious reasoning, often
founded on the so-called medical model of disability. Instead of
changing society, individuals need to be “cured” so they fit in
with it. Control rests with the professionals, while the individual
remains passive. Why having a medical condition and passivity go
together has never been satisfactorily explained.

Through rejecting passivity, advocates of the social model are
sometimes accused of denying the part a medical condition can play
in restricting life opportunities, irrespective of adjustments to
society. However, there is a big difference between medical
intervention that controls pain, or prevents the need for dialysis,
and the body fascism that insists on conformity to some notion of
physical perfection. For disabled people, the worst assumption is
that they must have such wretched lives that they would be better
off not being born, and should not have their lives unduly
prolonged.

It should not be surprising if the medical profession sometimes
reflects such wider social attitudes. But it is particularly
damaging when it does so, given its power. Research suggests that
people with learning difficulties are excluded from even very basic
decision-making, which reveals an overriding view that carers are
entitled to make decisions on their behalf.¹ Many
interviewed felt professionals did not listen to them, and some
refused to treat them at all. They had little accurate information
about general health issues such as contraception.

Sometimes, though, the problem is not how to access health services
but how to escape them. New mental health legislation contains
powers of compulsion, whereby people living in the community can be
forced to take medication against their will. There is provision
for electroconvulsive therapy to be administered to patients deemed
incapable of consent. Recent research on children with complex
support needs in health care settings pointed to the need for a
procedure whereby professionals could identify individuals who had
become “lost” in the system.²

To normalise what is often a dysfunctional relationship between
disabled people and health care services, we need to challenge
oppressive social attitudes and institutions that disempower. It is
not all doom and gloom. There is good practice out there that needs
to be widely promoted. And we need to be realistic. Patients are
not always in a position to make decisions, although advance
directives and independent advocates have important roles to
play.

Being denied choices is problematic, but having to make them can be
problematic too. If there are simply not enough resources, on what
basis should one person receive treatment and another not? Whatever
the answer, it must not be based on prejudice.

¹ K Keywood et al, Best
Practice? Health Care Decision-Making by, with and for Adults with
Learning Disabilities, National Development Team, 1999

Sally Witcher is a freelance consultant and researcher. She was
formerly director of the Child Poverty Action Group.