There is something bothering me about both sides of the ‘Down Syndrome Blood Test’ debate. The media asserts that a risk-free, highly accurate test for Down Syndrome must be good because it will reduce the number of miscarriages, resulting from a more risky test. What these statistics fail to explain is the resulting ‘reduction’ in Down Syndrome will be as a result of an increased number of babies being aborted because they are diagnosed as having Down Syndrome. Meanwhile those within the Down Syndrome community have responded by pointing out all the wonderful, normal things people with Down Syndrome do and all they contribute to society.
A couple of points.
I don’t know anyone who, whilst pregnant, wants their child to be born with Down Syndrome. It is a condition on a huge spectrum, that can be life threatening (usually as a result of heart problems) and is likely to be accompanied with learning difficulties. Furthermore, I personally only know parents of children with Down Syndrome who celebrate and adore their children. Each one would say their child enriches their lives beyond anything they could have imagined.
Unfortunately, the major counter response to the media’s assertions about how we need to eradicate Down Syndrome is to point out how ‘undisabled’ people with Down Syndrome are. They say, “Children with Down Syndrome aren’t a burden, they are a joy and very ‘normal’.”
I think these comments provide a good balance to the one-sided view of Down Syndrome presented by the majority of the media and health professionals but it misses something very important. These arguments are being drawn into measuring value and worth by ability and success, by judging a child by how ‘normally’ they function.
For me, the biggest flaw of any ante-natal blood test is the idea that a blood test can accurately measure the value of life.
My son is very severely disabled. He is blind and fed through a tube in his stomach because he cannot swallow safely. He can’t stand, roll or sit on his own. He isn’t able to communicate anything beyond immediate likes or dislikes. He can’t do anything independently. It is hard work caring for him. But that description of him tells you absolutely nothing about him, about who he is and how much he is loved and valued by his family and those who know him. More importantly, none of those descriptions make him worth-less than my other two sons, who have no disabilities at all.
I can’t wait for the day the disability community fights the judgemental, misrepresentation of the media about disability without saying “But my son isn’t really that disabled, he can do so much.” Because that will mark the day we begin to really challenge public perception.
Only when we start to see ‘people’, and not disabilities, or ‘children’, and not their health issues, will we start to see real value.
As soon as life is about the fittest and strongest, the cleverest and bravest, we miss the beauty of interdependence, the joy of caring and the glory of vulnerability. No wonder in our society the elderly aren’t afforded the respect and honour they deserve because we still think their value comes from what they did, not who they are and who they remain to be.
I would love to see a different debate. Instead of arguing that our disabled children aren’t really that disabled, how about we have the courage to fight the ideals of a society that values strength over spirit. Those who are disabled in our society will only begin to be seen as valuable when we stop measuring our worth with brawn and knowledge. When we start seeing the humanity and spirit of a person, the love they generate around them, and the relationships they create.
Valuing the vulnerable in our society will only come when we stop trying to persuade people how ‘normal’ the disabled are and start showing people that true value and worth comes from beyond the disability. Our worth comes from who we are, not how ‘normal’ we can be.
It comes from the spirit of a person and that simply can’t be measured.