6 Oct 2016

Thoughts on A World Without Down’s Syndrome?

We watched the documentary prenatal screening and the reduction in people being born with Down Syndrome (DS) presented by Sally Phillips.
Below is a short clip.

The best article on this that I have read is by Francis Ryan in the Guardian.
I have however some points that I want to make about the programme. I tweeted these this morning and am bringing those thoughts together now.

First principle is that individual women must have full bodily autonomy. Nothing in #worldwithoutdowns negates the need to legalise safe, free abortion in Ireland/elsewhere. It is still essential that Irish people #repealthe8th and that women in the north are also afforded rights over their own bodies.

It's good that a programme like A World Without Down’s Syndrome? was created and screened. It's right to raise these questions and challenge assumptions about the value of disabled lives.

Sally Phillips was open about her bias as the mother of a child with DS. The scientists, however, were at pains to dissociate their work from any consideration of ethics. Lyn Chitty who developed non-invasive prenatal test was out of line when she said to Sally "Well your son is likely to outlive you," as though that was a bad thing. Children tend to outlive parents, that's a good thing. I want my 3 kids to live at least as long after my death as I lived before their births. And the Californian dude who sequenced his unborn son's DNA said, science just tells you what you can do. Morality is something else.

Geneticist George Church in Harvard asserted, "It's all about education. It's not the technology that's the problem. It's the societal pressures and the market forces that are at work." He said it's the job of parents to change society's perception of the value of disabled people. As usual, the work of disabled self-advocates who should be at the centre of this is ignored.

Society doesn't value and accommodate disabled people. The rhetoric around disability is deficit and bigotry laden. Politicians and the media depict disabled people as scroungers who burden our education, health and social care services. In this climate, it is no wonder many people opt for prenatal tests.

However prenatal testing puts pressure on mothers to reject a specific child which is different from women who do not want to be pregnant at all. Fatal foetal abnormality is different again- it is appalling that pro-forced birth folk conflate FFA and disability. Little angers me more.

The show attempted to highlight the humanity of people with Down Syndrome. It partially succeeded. It emphasised, as usual, the benefits that they bring to others, how loving and "predisposed to happiness" they are and how they make families better. I dispute this; those with DS are as variable in their personalities and temperaments as all of us. They have innate value. They don't need to be cute or clever or exceptional.

I disliked the section with the woman crying on stage about the way midwives told of the diagnosis. The show centred the experiences of mothers of kids with DS. I disliked the way Sally hugged the woman with DS in Iceland and called her a lovely girl. That was infantilising

It was just wrong to interview a woman who'd had an abortion and have her explain her choices on camera. This issue is about society's values, not individual choices.

I've read complaints that only "high functioning" (yuk) people with DS were shown. Rubbish. There's more than enough out there about how hard it is to raise disabled kids. I'm happy to see people with DS, old and young, just getting on with life for once. It's irrelevant whether people with DS or other disabilities have special talents that benefit society. If everyone had to prove their usefulness to society to be allowed to exist, the world's population would take a big drop.

I worry that the information given to women following screening belittles the value of disabled lives, and inordinately emphasises difficulties they face. It's not as though all non-disabled people enjoy a charmed, perfect, blissful existence.

Is there a test to see if the child you're pregnant with will grow up to be an abuser, thug, manipulator, murderer or Tory? Is DS so much more deserving of eradication than all these?

The problem is that women are getting the message that they would be irresponsible to choose to give birth to a child they know to be disabled. These children are seen as 'drains on society' leading 'empty and pain-filled lives'. They are said to 'cost the state too much to care for them'.

The rhetoric that disabled people are drains on society leading empty and pain-filled lives is eugenics and anti-feminist.

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