The Politics of Down Syndrome

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Kieron Smith

In 2010 Kieron and Sharon Smith went to see the comedian Frankie Boyle, who proceeded to reel out a series of jokes mocking people with Down syndrome. As parents of a daughter with Down syndrome they became the centre of a media storm following a blogpost that Sharon wrote after the gig.

Though it was this incident that prompted the book, what follows is a thought-provoking and enlightening portrayal of the poor treatment that people with Down syndrome receive in Britain today.

It is understood now that Down syndrome is a genetic condition where there is an extra chromosome 21, meaning those with Down syndrome have 23 pairs plus one extra chromosome. But Smith begins by explaining the racist roots of its discovery by the Victorian doctor John Down. Down thought he had indentified the racial characteristics of "idiots" and likened the facial characteristics of those with Down syndrome to the "natives of Mongolia". He concluded that Down syndrome must therefore be the result of racial degeneration.

The stigmas attached to Down syndrome remain today and Smith deals with how it is regarded within the health system. He is fervently pro-choice but worries that attitudes towards Down syndrome and lack of public service support have contributed to the statistic that 91 percent of confirmed cases of Down syndrome in babies lead to abortion.

He discusses the case of John Pearson, who was born with Down syndrome with no significant complications in 1980. After being rejected by his parents, rather than being put up for adoption, John Pearson was given only water and painkillers until he died three days later. Following a court case it was concluded that it was "ethical to put a rejected child upon a course of management that would end in its death". Smith says this is not the first time this had happened to a child with Down syndrome - it was just the most well publicised.

In education policy, Smith is firmly in favour of the inclusion of children with disabilities in mainstream schools. This puts him in direct confrontation with current government policy of removing what Michael Gove calls "the bias towards inclusion", effectively leading to the increased segregation of children with special educational needs.

Of particular interest is the idea that Down syndrome is in conflict with many of the trends of capitalism. Smith claims that the anti-individualism that Down syndrome symbolises feeds into "fears of...being un-beautiful and outside of society".

Other authors, notably Sunny Taylor in The Right Not to Work, have argued that one of the reasons the disability rights movement has been slow to take off is that the dehumanisation of those with a disability led to it being viewed as a personal, rather than a political issue. Smith's book goes some way towards addressing this. As an introduction to the issues and a simple attempt to dispel the stigma attached to disability it is a useful guide.

The Politics of Down Syndrome is published by Zero books, £9.99