Tuesday, October 6, 2009

The Nature of Disability

The Nature of Disability: Tolstoy opened his novel Anna Karenina with the provocative observation that 'Happy families are all alike; every unhappy family is unhappy in its own way.' He might have gone on to remark that every family with a disabled member is disadvan­taged in its own way.

Some families cope well with the most distressing problems, whereas others are devastated by disabilities that in purely medical terms are far less severe. The differences are to be found in the personalities and life experiences of the child and their parents, the functioning and strength of the family unit and the effectiveness of their network of support among relatives, friends and professional services.

The problems of the disabled child are often complex and multiple. No single profession can have the requisite knowledge and skills to deal with all of them. For example, the diagnosis and management of a child with a language disorder or learning disability might involve a speech therapist, psychologist and teacher. In these disci­plines there is less emphasis on, or expectation of, a unitary diagnosis and more emphasis on defining problems that are amenable to intervention; in fact, there are many situations in which the precise medical diagnosis is of little relevance and is of considerably more interest to the doctor than to the child, their family or their teacher! An increasingly vocal body of opinion, particularly those working with learning-disabled adults, believes that disability is not primarily a medical problem and that treating it as such merely creates handicap.

When parents are told that their child is disabled, their perceptions of the child and of themselves are changed. There is still a stigma attached to disability. Goffman (1963) in his classic study described the concept of stigma thus:

“the Greeks, who were apparently strong on visual aids, originated the term stigma to refer to bodily signs designed to expose something unusual and bad about the moral status of the signifier. The signs were cut or burnt into the body and advertised that the bearer was a slave, a criminal, a traitor — a blemished person, ritually polluted, to be avoided, especially in public places ... today the term is widely used in something like the original literal sense, but is applied more to the disgrace itself than to the bodily evidence of it.”

Parents may reject any medical term which implies disability or handicap; it seems that medical labels and therapy may stigmatize the child as much as their actual disability. An opposite phenomenon may also occur; parents may seek eagerly for a medical label, since our society has come to believe that modern medicine is powerful enough to have an answer for all problems if they can be defined in medical terms.

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