Recently, a documentary on Down's Syndrome and disability was shown on Channel 4 in the UK. It provoked a great deal of debate into the possibility of a world without disability. I have to confess, I didn't see it myself, nor was I engaged in any of the subsequent debate which occurred on Twitter. I caught up with the discussion a little later, and it was both fascinating and thought-provoking. My dear friend Karen had been much more involved in the debate, and approached me with a beautifully written piece, on the possibilities of a world without disability. It's a difficult subject, and one which she tackles bravely. All thoughts and opinions are hers; some I agree with, some not. And that's ok. Pieces like this need discussion. They need debate and polite discourse. Please enjoy, and feel free to post your thoughts in the comments section, or to chat with either myself or Karen on Twitter.
Some thoughts prompted by 'A World Without Down's Syndrome?'
Last week there was a documentary screened called 'A World Without Down's Syndrome?' I didn't see it, but it provoked intense debate on my timeline with people expressing many different opinions. It is an emotional debate and there are lots of things about it that I'm not sure how I feel. I wouldn't abort a pregnancy because it was Down's, but I strongly believe in the right to choose. It is difficult to police a system based on choice.
Also I think it is worth making the point that Down's isn't just about developmental issues, there are often associated heart defects. I knew someone who lost her six year old brother to a heart problem associated with his Down's. On the other side is the fact that although Down's is a spectrum, like life, most people with the condition are not very 'disabled' by it. By that I mean that not only do they walk, talk, see, hear etc, but they work, have relationships, drive cars, learn foreign languages and so on. There may not be any neurosurgeons with Down's, but how many 'regular' people are neurosurgeons? If we ever got to the point of pregnancy screening that could accurately predict academic achievement, would people abort any pregnancy that couldn't result in a neurosurgeon? That wouldn't leave very many!
The programme made me think about the wider issues of disability in society. I stated that surely a world without disabilities would be good. I still believe that. Some people don't want to see a world without disabilities, obviously they are absolutely entitled to their opinion, but I disagree. Please note that I am NOT advocating terminating pregnancies that will result in disabled children. I am talking about a possible future world where we could intervene to surgically prevent a disability from ever having occurred. Now I know this gets into a very murky area and the shadow of NAZI eugenicists. I am NOT saying that someone with a disability is worth less than anyone else. They are absolutely as important and they contribute to society and should be totally respected. What I am saying is that if I had a choice to be born blind or sighted, I would choose sighted. Wouldn't you? If you were pregnant at some future date and you knew they could safely operate on the foetus to prevent it being born blind, wouldn't you do that too? This is a controversial area I know and I am very sorry if I am upsetting anyone, that isn't my intention.
This does call to mind the episode of Star Trek The Next Generation where the Enterprise is saved because of the technology in Geordie's visor and he says if he hadn't been born, that tech would never have been developed. But it also reminds me of the ep where Riker becomes a member of the Q and grants Geordie what he knows is his greatest wish - the ability to see. Two sides of the coin neatly illustrated there by Star Trek. But I digress....
It is also true to say that much disability develops later in life and isn't present from birth. We work hard to try to prevent such disabilities though and I personally think that is right. For instance we treat glaucoma to try to prevent blindness. If we think we should just let nature take its course, why do we treat illnesses? There is also a fine line between illnesses and disabilities sometimes, like with Cystic Fibrosis.
When cochlear implants were introduced, some people in the deaf community reacted angrily and accused those having them of being traitors. I never understood this. If their condition was treatable with an implant and they don't choose to use it, that is absolutely their choice and should be respected. It is not compulsory. But for people who do choose it, why on earth shouldn't they? I do understand that a strong sense of community developed as a result of feeling excluded from mainstream society to a certain extent. It is sad that people have been excluded and more should be done to make things inclusive, like signing and subtitling on more television programmes/films/theatre performances, more awareness of the issues etc. But I don't think having a strong sense of the deaf community should ever result in criticism of people who wish to and are able to take advantage of a new technology that can help them to hear. Why is it 'better' to be deaf?
It was pointed out to me (very nicely, truly) that if my mental issues had been seen before birth, I could have been terminated. I wish I had been. It isn't as though I would ever have existed, nothing would have been lost. Someone else would have been born in my place, someone for whom life wouldn't be so miserable. My life has no value to me or anyone else. Don't get me wrong, I'm not saying my mum, for example, doesn't love me. She does. She would have loved another person born in my place just as much, she would have lost nothing. Me, this specific entity of me has no value. Perhaps future screening should focus on the happiness potential? If such a thing were ever to be possible, that might be the greatest application of screening. Whether or not someone will be happy is ultimately much more important than whether or not they can walk.
Screening in the future is likely to become much more accurate. We need to think about these issues now. I don't want to see 'designer babies.' I don't want pregnancies to be ended because of the gender or sexuality of the foetus. In China, according to the BBC, for every 100 girls born there are 119 boys, as a result of sex-specific abortion. This is incredibly worrying, but again under a system of choice, it is hard to police.
All these issues are difficult ones, who decides what is a 'disability' in the first place? In some circumstances I think it is pretty clear, but in others it is a very fine line. Developmental issues, for instance. Who's to say how fast someone 'should' develop? All children develop at their own speed, just because some are outside what we have considered to be 'normal' does that mean they are disabled? Intelligence varies widely among the general population, who decided where the line should be drawn that says those below it are disabled while those above it are 'normal'? Everyone is on a spectrum. Perhaps we just need to realise that and stop classifying people at one end of that spectrum as intellectually disabled? Besides which there is a lot of overlap. To go back to the programme that started me thinking about all this in the first place, there was a woman with Down's featured who spoke two languages and was hoping to marry her long term boyfriend soon. She is doing better than me on both counts. Who's disabled?
My thanks to Karen for such an erudite, thought-provoking piece. You can follow her on Twitter @KarenKTS11
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