The Politics of Down Syndrome

‘It was not a great night out.’

Kieron Smith is clearly a dab hand at understatement. For the night in question – which Smith, the father of young girl with Down syndrome, describes in painful detail in a new book – involved grim Glaswegian comedian Frankie Boyle, a predictably side-splitting routine about people with Down syndrome being, well, a bit simple, and then, to cap it off, a front-row confrontation between Smith, his wife, and an unrepentant Boyle. Oh, and it also made the national newspapers.

The event clearly still rankles. As Smith explains to me, ‘[Boyle] shouldn’t have apologised for using the jokes, but he should have apologised for the lack of respect he showed us when he realised why we were “talking” and the way he handled the situation. Also, he made it worse by then continually referring to it in future stand-up shows.’

There was, however, something good that came out of this whole, rather unedifying, affair. And that is Smith’s book itself, The Politics of Down Syndrome, a fascinating essay that attempts to understand why this particular learning disability continues to be singled out, stigmatised and, increasingly, treated as something that the rest of society ought to segregate out of societal existence.

Not that the mockery and denigration of those with Down syndrome (DS) is anything new, of course. Its history as a diagnosed condition, writes Smith, has always been shot through with prejudice. Consider the man from whom DS now takes its name: the British physician John Langdon Down. In the late 1850s, as a young superintendent at the Earlwood Asylum for Idiots, Down identified what we now know of as the physical manifestations of DS – the epicanthic folds on the eyes, the broad, flat face, and so on – with the racial characteristics of people from Mongolia. ‘A very large number of congenital idiots are typical Mongols’, he wrote in his 1866 study, Observations on an Ethnic Classification of Idiots. ‘So marked is this’, he continued, ‘that when placed side by side, it is difficult to believe that the specimens compared are not children of the same parents’.

That Down was willing to identify a congenital condition with race – to make, in effect, ‘idiocy’ a racial characteristic – was hardly a surprise. Down was writing in a period of imperial confidence abroad, and working-class agitation at home, in an era that was replete with spurious natural and biological justifications for social and political inequality. Yet his racial claims stuck. And for years, those with DS were known more often than not as ‘mongols’.

Jérome Lejeune’s discovery in 1959 that those with DS were not in fact racially afflicted but rather possessed of an extra chromosome 21 (having three instead of two in each cell), did little to change matters. Throughout the 1960s and beyond, ‘mongolian idiot’, ‘mongol’ and ‘mongolism’ continued to be used as terms of classification, not to mention as terms of abuse. Incredibly, it took a complaint from the actual country of Mongolia in 1965 for the World Health Organisation to start officially phasing the terms out.

Smith does refer to the ‘echoes’, the ‘legacies’, the ‘ghosts’, even, of this Victorian diagnosis. But it is when he is looking at the contemporary trends and institutional biases that have helped to sustain the stigma around DS that his book is at its best.

He starts with UK public health policy. Smith’s central point here is that DS is increasingly being treated as something of which prospective parents ought to be fearful. He notes that prior to 2004, only women over 35 were given antenatal screening to check for the risk of DS. But following a New Labour white paper on the ‘potential of genetics in the NHS’, the screening process was offered to all parents. The problem, as Smith presents it, is that such a universal offer of screening sends the signal that DS is such a serious, dangerous condition that it needs testing for. This despite the fact that a condition like cystic fibrosis, which reduces life expectancy by 50 years on average, is not specifically tested for.

Furthermore, following significant advances in medical research, DS is not even the condition it was just 25 years ago, with statistics from the US showing that life expectancy has increased from 25 years in 1988 to about 60 years today. This is not to suggest that Smith wants to see screening for DS stopped. It ‘is a disproportionate response to DS’, he explained to me, but ‘this doesn’t mean it cannot be offered to those who want to access it’. His problem, it seems, is the fact that DS has been singled out as a special case, a unique parental peril.

And again, in education, Smith identifies a similar, albeit figurative screening-out and segregation process at work. So whereas the 1976 Education Act led to a shift in favour of ‘greater integration and improved provision in ordinary schools’, the perceived failure of this attempt to educate children with ‘special education needs’ alongside non-SEN pupils, has now prompted the Lib-Con coalition to continue where New Labour left off in trying to ‘end this bias towards inclusion’. So out with integration and in with segregation, and, with it, the sight of DS children being sequestered away in special establishments. The problem for Smith is that the failure of integrated education owes less to some inherent flaw in the idea of integration itself than it does to insufficient resources and inadequate teacher training – for example, DS children find it far easier to learn visually, through reading for example, than orally, through speech.

However, such institutional shifts, in which both medical and educational establishments, supported by the government, have helped to further stigmatise DS, do not occur in isolation. They come against a background of profound social pessimism. ‘A society’, writes Smith, ‘struggling with a lack of faith in the human ability to change things, to successfully manage relationships and everyday life, is also likely to find it hard to cope with the perceived “risks” of having a child with Down syndrome. It’s likely to conjure up a cascade of resultant personal risks too; the risk of splitting up over the child, of being trapped, of failing to provide for the child properly, of not coping.’

The extent, then, to which DS is seen as a risk corresponds with the extent to which parents, indeed adults, are deemed unable to cope with life in general. Indeed, so suspect is adult autonomy in the eyes of the state, says Smith, ‘that parents, and adults generally, are treated as if they themselves were still children, needing to be guided on the simplest of things, from the food their children eat (“fruit good, fat bad”), to how and when to read to your child’.

Add to this miserable mix the pervasive neo-Malthusian sentiment that too many people are consuming too much, and the act of bringing a DS child into the world comes to be seen as positively irresponsible. ‘I think it’s a very dangerous trend that has many different flavours’, Smith tells me. ‘I’ve highlighted two in the book: attacks on older mothers; and the idea that screening out those with disabilities is the right thing to do on a “crowded planet” – it’s scary stuff.’ (As an aside, it is worth noting, as Smith does, the eerie echo of the original Malthusian attack on the breeding habits of the lower orders in the contemporary proliferation of books and studies on the low uptake of DS tests among the working classes and the best way to remedy the situation.)

Yet, despite Smith’s attack on institutions and cultural trends and the extent to which they inform people’s perception of DS, this should not be mistaken for an attack on the principle of individual freedom. Throughout The Politics of Down Syndrome, Smith is at pains to defend ‘the fundamental right for all women to have an abortion on demand’. Likewise, he is keen to stick up for parental autonomy in the face of an ever-more intrusive state. Even Frankie Boyle, whose mean-spirited riffs on DS did so much to prompt Smith into writing his book, is entitled to the freedom to continue mocking people with DS. ‘I would defend comedians’ right to be offensive’, Smith tells me. Before adding, ‘I would also defend the right of others to criticise them for not being funny and for reinforcing stereotypes’.

But for all Smith’s libertarianism and free thinking, there remains a not-unproductive tension. Because, while he defends the principle of autonomy, he writes and talks frequently of the ways in which our practical capacity to exercise our own judgement – to act autonomously – has been impaired. In the case of DS, this means that the decision, for example, over whether to have a child knowing that there is a risk of it having DS, has been weighted in favour of abortion. No one is pretending, least of all Smith, that raising a kid with DS is easy, or that these children will be able to achieve the same things as those without DS. But our ability to decide for ourselves whether to bring a child with DS into the world is surreptitiously being taken away from us by a state informed by some of today’s most retrograde trends.

What he is calling for instead, it seems, is a society in which people with DS are simply given the opportunity to ‘realise their potential’. This, as he puts it, is ‘equality of opportunity’ and not, of course, a way of pretending as if everyone is the same. But for this to happen, we need to stop treating those with DS, much as Dr Down did all those years ago, as a breed apart. ‘I trust people’, says Smith. ‘And I feel that greater inclusion of people with learning disabilities [in education, in the workplace] is the way to overcome stigma and get through this. This is not a case of looking to the state to “provide this”; it comes about by engaging over the issues, hence I wrote the book!’

Tim Black is senior writer at spiked.