Prenatal testing and disability

There have been several articles in the UK media recently about prenatal testing and the number of children with Down Syndrome born each year. Some stories have suggested that an increase in the number of children born with Down syndrome, suggests that we're living in a more caring and accepting world, while others have criticised the interpretation of the data, suggesting that the percentage of fetuses with Down syndrome to be aborted has not changed.

Via Michelle Dawson's TMoB board, I discovered a couple of articles in the Times, one which disgusted me and one which I cheered. The first, by Minette Marrin, contains many outstandingly ignorant and prejudiced statements, like this:

I am convinced that it is a grave misfortune for babies to be born with Down’s or any comparably serious syndrome. It’s a misfortune for their parents and their siblings as well. Sad observations over decades have convinced me: a damaged baby is a damaged family, even now.

She goes on to preempt any disagreement with her views:

I resent the moral condescension of those who claim that people who think like me are not only wrong but hateful; there have been vicious attacks on me in the blogosphere by disability-lobby extremists. My point of view does not make me a heartless eugenicist.

I think that this article is hateful. I'm not sure that my saying so counts as a "vicious attack" nor that I'm a member of the terrifying "disability-lobby extremists". Watch out, they're coming to a town near you with their torches, pitchforks and calls for ramps, assistive communication devices and individualised education plans!

I don't think her views make her a heartless eugenicist, but they do display a belittlement of the value of disabled lives, and a inordinate emphasis on the difficulties faced by disabled people, as if non-disabled people enjoy a charmed, perfect, blissful existence. See this example of Ms Marrin's reasoning:

In a hyper-sexualised culture that worships bodily perfection, beauty and sexual success, adult life is also bound to be painful for people with Down’s.

Isn't she aware that many adults, even the non-disabled ones, have relationship problems and broken hearts and personal insecurities?

India Knight, also writing in the Times, issues a slap down. It's lovely. In response to Marrin's line:

...what more powerful “social reason” could there be for an abortion than the virtual certainty that the foetus would be condemned to a life of frustration, disappointment, dependence, serious illness and poverty, to the great sorrow and hardship of its family?

Ms Knight writes:

I like 'virtual certainty'. I mean, f*** science. Bugger medicine. Take your research and shove it. 'Virtual certainty', innit? No jaw-dropping medical advances taking place every year, dear me, no. Sure, your hole-in-the-heart baby - to pick one example at random - would have died not very long ago, and is now likely to lead a full and active life, heart fully repaired, as though nothing had happened. Life expectancy for people with Down's has doubled since the 1980s - but hey. Let's not nitpick. Or, you know, believe in the fundamental decency of human beings, or in the possibility of finding joy - and pride, and strength - in unexpected places.

Applause from me! And to another one fighting the ignorance, Nick, dad to Jacob and his siblings, who tackled some blogger's assertion that people proceeding with a pregnancy when they know the baby will be disabled, view their children as pets. Nick responded:

If you are going to approach a subject of such emotive power as the right for people who have a chromosomal difference to exist, it is a noble idea to invest your strongly held opinion with first-hand experience. Go meet some downsies. Get to know them. And possibly when you’re at it meet a few blind people. They’ve been holding us back for ages too. The autistic ones are no better. And cancer sufferers are an insane drain on society as a whole. Idea: burn the hospitals altogether, and the clinics, and shut down any factories that make wheelchairs or crutches or other such resource-squandering gimmicks. Let the bastards with heart issues die off. The car-crash victims probably did it to themselves, so just pull the plug now and cut down on the greenhouse gas. Double win!!

And when they’re all conveniently out of the way we’ll sit down, you, me and Dr Mengele, and we’ll really have it all to ourselves. Because there won’t be anyone else left.

I came across another wonderful article from the F word blog. The author, Victoria Al-Sharqi, is a disabled woman who declines naming her conditions because, as she says, "if you can’t label me, you can’t define me and you can’t write me off." She writes:

Disabled people who do oppose selective abortion are usually dismissed as unqualified to speak about the topic. I lose count of the number of times that I have been told that the ‘seriously handicapped’ clause does not apply to People Like Me. It applies to those poor people who can’t speak or even wipe their own bottoms, let alone appreciate life for what it is. I just don’t understand what it means to be severely disabled; I’m blinded by the relative mildness of my particular handicaps. But fear not, enlightenment is at hand. While I may not understand severe disability, there are plenty of able-bodied people who do, so why don’t I just sit back and leave these difficult questions to the real experts?

I think that every autistic person I know who has written publicly about autism and/or disability issues, has been told the same.

I wrote about the development of a prenatal test for autism and selective abortion a few years ago here which can be summarised by this excerpt:

Prenatal testing puts pressure on parents, mothers in particular, to reject a specific child. This is a whole different issue from that facing women who are pregnant and do not want any child at that time. Woman are getting the message that they would be irresponsible to chose 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'. This is eugenics. It is anti-feminist.

Yesterday, I read another opinion on all this. A GP blogs about a pregnant patient of his who has discovered that her fetus has Down syndrome, who wants an abortion and who "feels particularly bad about it because she too has read and listened to the recent ill-informed media barrage which alleges that more and more parents of Down’s babies are deciding not to have abortions."

He's critical too of the Down's Syndrome Society's chief executive for suggesting that the higher birth rate of Downs babies "seems to show that parents are thinking more carefully before opting for termination."

Dr Crippen writes:

The Down’s Syndrome Association live in the same cosy world of politically correct half-truths as the para-olympics. Oh! Dear me, how dare you suggest that watching people play tennis in wheelchairs is not just as exciting as watching Wimbledon? How dare you suggest that Down’s Syndrome sufferers cannot lead a completely normal life?

Oh the sarcasm kills!

The post contains other points I take issue with and I wrote about some of them in my comment on the blog. Michelle Dawson also criticised the post but her concerns were written off and she was labelled as "getting emotional, silly and abusive". The majority of the comments there just make me sad, but not as much as seeing Ben Goldacre, writer of the fantastic Bad Science blog, for whom I have great respect, linking to Dr Crippen's blog post on his own MiniBlog with the description, "Some Crippen realities on Downs. It really is a bit scumbaggy to make parents contemplating a termination feel guilty"

Does Dr Goldacre really believe that we shouldn't discuss these issues for fear of making prospective parents feel guilty? Aren't the lives and views of a whole group of people, deemed by society to have lives that are better not lived, not important at all? Is this post "scumbaggy"? Isn't it worth pointing out the way the NHS screening program works, as explained here:

The NHS' so-called 'best practice' information leaflet devotes less than 3 pages to informing parents about Down syndrome. Most of this limited information is about maternal age and chromosomes rather than people. People who have Down syndrome are not featured talking about how they view their lives. Nor are their families. There are no photographs of people who have Down syndrome. This 'best practice' guidance then devotes 12 pages to describing the screening and diagnostic process in detail. The message? On balance, parents should be far more interested in learning about the screening process than the condition actually being screened for.

Is that post also "scumbaggy"? Is it wrong to suggest that changing attitudes, better education and medical care, and more interaction with actual disabled people may be leading some people to either decline prenatal screening for disabilities or to elect to continue with a pregnancy despite knowing the child is affected?

I find many of the comments on these articles and blogs disturbing in their libertarian fuck you attitude. There are many who resent the welfare state, and laws to make society more accommodating of disabled people. Dave Hingsburger had a poll on his blog recently. Like the majority of those who voted, I answered the question "the most frustrating thing about disabilities is..." with "the attitude of others." Is it any wonder?