A world without Down’s Syndrome?

Yesterday, like a lot of people, judging from Facebook and Twitter, I watched Sally Phillip’s documentary, about her own experience of having a much loved son, Olly, who has Down’s, (and two other children), and also about the wider picture once a new screening programme goes live. This new screen is non-invasive and it’s thought up to 99% of foetuses will be identified. Sally travelled to Iceland, where the test is in place, and where there is a 100% termination rate at present.

There was an outpouring of emotion on either side of the debate. Many viewers, of which some had children with Down’s themselves, praised the programme. A smaller number felt that the programme was not balanced and did not give the other side of the debate – the lack of support for families, or how best to express the woman’s right to choose, sufficiently strongly.

I think it was a very strong documentary, with a wonderful and engaging presenter. I think, from the programme, that Sally herself is on a journey, exploring the woman’s right to choose and what implications that has, after this test is introduced, for people with Down’s. It’s a very difficult area, sensitively explored. In the end, given how hard that right was won, I support the woman’s right to choose, but I do feel that we need to see far more positive images for people with Down’s and disabled people generally, in society. The medical profession does need to work on its presentation of the diagnosis too – it is not a curse, or a tragedy, to raise a disabled child. It may well be a challenge, given the cuts and the attitudes of many in society, and particular conditions present particular challenges. That’s not the same thing. Luckily for me, living with chronic migraines, this is not a condition that could be picked up with testing and no doctor has ever suggested, to my knowledge, that migraineurs do not have a right to life. But where will the dividing line fall, in the future, between those granted a right to life, and those deemed a ‘risk’ to their parents, and a burden?

It made me look back at my own book, Scapegoat: why we are failing disabled people, which was published in 2011. In the chapter, Not them but us: society’s challenge, I examined the wider issues of our attitudes towards disability. When we condemn the perpetrators of disability hate crime (the main theme of the book) we tend to believe that they are in the wrong – and that we are better than them. But our general attitudes, although they are shifting in the right direction, remain somewhat negative – especially when it comes to disabled people marry, or disabled children coming into the world. As I wrote then: “Discrimination starts before birth for a disabled person, and continues right up to the point of death. Expectant mothers are offered an increasing array of pre-natal testing and if there is the possibility of giving birth to a disabled children they are offered, quite rightly, counselling and advice on which steps to take. As a feminist, I do believe in the right to choice whether or not to continue with any pregnancy, but this does not take place in a framework of neutrality towards disability.” I haven’t diverged from that view, even though I wrote that chapter five years ago.

Lastly, as I wrote in my conclusion: “The obsession with the body beautiful, which puts such pressure on young people to self-harm and stop eating, and on people of all ages to have risky cosmetic surgery, is as damaging ow as it was in classical times, if not more so….Perhaps one of the saddest consequences of this is the choice that some parents of disabled people make, to mask the obvious signs of their child’s impairment (particularly children with Down’s syndrome) with cosmetic surgery, so that they can avoid the mockery that they would otherwise face. So where do we start to make the change? It has to start with an acknowledgment that none of us is perfect – that is what makes us human…We all grow old and infirm, and die. But at those times of vulnerability, we still believe that our humanity should be recognised, beyond our looks, our ability to work or our intellect. Disability, therefore, is part of our human condition and cannot be set apart.”


Well done to Sally, and a great production team, for raising these thorny and heart-felt questions.