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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

² K Stalker et al, Care and Treatment? Supporting Children with Complex Needs in Healthcare Settings, Pavilion Publishing, 2003

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