4 Dec 2008

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?

48 comments:

TheGonzoGirl said...

This really made me smile!

Shame Ben Goldacre sees this as making women feel guilty for considering a termination, because I always thought it's the other way round, women who decide to have a baby with Down Syndrome are made to feel irresponsible. When people with disabilities are considered a "burden" on society, these women do not have a real "choice", when they just succumb to pressure from doctors and society.

AnneC said...

Sharon:
Thanks for writing this.

It has been frustrating me for quite a while now to see how many people in the mostly-scientific community (whom I feel like "allies" with in many contexts) don't get disability stuff. I am a huge fan of science and have tremendous respect for it, and certainly don't have anything against logic or realism.

But I do not like at all the fact that so much of the time these days, asserting the value of autistic/disabled people's lives is presumed to go along with fuzzy-headedness and lack of critical thinking, or even with fundamentalist religiosity. I'm an atheist, an engineer, and a lifelong science geek who also happens to be autistic and I am getting very weary of being expected to attach myself to weird libertariany widgets in order to be considered anything other than muzzy-brained and "overemotional".

TheGonzoGirl said...

The skeptics are not doing themselves a favour with that attitude, because the MMR vaccine hysteria could only happen, because Autism is seen as this huge tragedy.

I disagree with one tiny point, I don't think these anti welfare people are real libertarians.
I wrote something about this today, because I'm really annoyed by that attitude.
:)

Sharon said...

@Gonzo Girl, glad to share the smiles!

I don't want to make women feel guilty for whatever reason. I agree that people who have disabled babies are often made out to be selfish. Marrin in that nasty article says that they "should understand they are choosing hardship, perhaps great hardship, for their child and for their other children. This has nothing to do with eugenics and everything to do with the painful complexity of moral choices."
Is it scumbaggy to make these parents feel bad for choosing to allow their "flawed" child to exist?

Heck, the tone of the NHS leaflet suggests those who decline testing are failing the system somehow!

AnneC YES!
I am with the science/rationalism/geek bloggers on so many issues, but I feel let down often by statements made by many of them relating to disability issues. There was an absolute failure by various commenters to try to understand the issues GonzoGirl and Michelle Dawson were raising on some of these discussions, with a whole lot of labelling instead. They keep implying that we say "disability is always just great!!!" rather than the truth, which is a whole lot more nuanced, but based on an appreciation of the existence of all types of people.

The Gonzo Girl, again yes. The scientists could, I think, do more and better work if they let go of many of the value judgements they bring to their work. Taking autism, if more was done to understand how autistic people learn and develop, that would help far more autistic people get on and have good lives than focusing on cures and prevention, and less time would have been wasted with the anti-vaccination nonsense, which would be good for everyone.

I'll have to think about more about my misreading of libertarians too.

Nick McGivney said...

I'm doing my damnedest to stay at an emotional remove from much of what you cite here, because it makes it easier for anyone who's handy with a bunch of statistics to switch off and discount entire lives, fulfilled and fulfilling lives, because of a fucking cleft palate or chromosomal shift. As you can see, staying at an emotional remove is working out just fucking fine.
I have exactly 54 weeks of experience with Down syndrome. In those weeks I have become a hell of a lot more aware of my previous shortcomings. I have been plunged into a greater world that seemingly thinks my son has less right to life than someone else. A world of coldly indifferent facts which I have quickly realised are rarely facts at all. Like most of the other reasons why this world is fucked up, they are emotive issues that ill-informed people have driven until actions which cannot be undone have taken place. Ill-informed, but NORMAL people, so they must be right. Whether it's pressure for termination being brought to bear on a mother who is carrying a foetus with a cleft palate, or pressure to find weapons of mass destruction, might don't make it right. It just gives it a sheen of acceptability because it panders to the uninformed and it wears the dress code of the majority. My apologies for ranting here, Sharon, but I need to or else I'll rant where I ought to be more incisively calm.

Keep kicking against the pricks.

Alyric said...

Minette Marrin isn't necessarily hateful or heartless. What she has is a lot more dangerous - it's the kind of blinkered stupidity that fails to see that every single person on the planet has abilities and disabilities. That she might think that Down's is completely life disabling is well her simplistic thinking. It obviously isn't.

Getting a real education here on the blogosphere. Why is it that some disability activists think you should turn up the volume on the 'dis' of the ability and others prefer to emphasise the 'ability'? Koplewitz is a really good example. He learn't nothing at all from the Ransom Notes campaign seeing what he had to say about ADHD recently.

It just has to be about the personality of the activist and nothing else or so it seems to me. In which case the people flogging the 'dis' need telling that their arguments are their ways of viewing the world and not anything to do with other people's reality.

Great post:)

Sharon said...

Nick, it's impossible to avoid getting emotionally involved when they're talking about people like you or your child. Rant away there, it has to be done at times. This is so true, "It just gives it a sheen of acceptability because it panders to the uninformed and it wears the dress code of the majority."

Anyway Nick, you should be ashamed, your blog with its beautiful pictures of your son and funny posts about everyday life, showing that families muck on after disability, might make someone choosing to abort feel guilty. How scumbaggy.

Alyric, over and over I read those sorts of uninformed views, and those making them always resist being told that they're wrong in their assumptions, trotting out some mangled version of what you've actually said, patting you on the head for being a silly little over-emotional thing, or claiming that it might be OK for you, but what about those with "real" disabilities, blah blah. I missed Dr Ransom Notes and his latest statments so must look into that.

AnneC said...

GonzoGirl:

I was actually leery of using the word "libertatiany" there but I did anyway because I was in a hurry and was hoping that it would work as shorthand for something I didn't have the brainspace to describe at the time. Probably shouldn't have, though, and I apologize for my linguistic laziness there.

I have met people who call themselves libertarians whom I agree with on many, if not most, points. When it comes to civil liberties, I would probably be aligned with many self-described libertarians most of the time anyway.

Economics confuses me greatly, though, and the thing I've been disappointed to see -- and here I am not tying this observation to "libertarianism" specifically -- is this set of attitudes that seems to assign value (or not) to people based primarily on how well they are able to "swim" (as opposed to "sink") in present status-quo economic and social conditions.

Furthermore, people with this set of attitudes (again not all these people are or consider themselves "libertarian"; I've seen some people who think this way who call themselves "social democrats" too) seem to commonly see suggestion of social factors (such as discrimination) in the difficulties faced by some presently disadvantaged demographic as "political correctness". I've been on fora where even expressive skepticism about the usefulness of heavily language-based IQ tests in determining a person's lifelong cognitive potential can get you essentially blacklisted as someone who "thinks ignorance is better than knowledge" or who is making "ideological objections to reason". And that's just frustrating. There are plenty of perfectly scientific critiques of certain types of testing and the conclusions often drawn from such testing, and it is a real pain to have these critiques not even listened to or dismissed as "ideological".

So, I apologize for using the term "libertarian" at all there -- I don't actually believe all self-identified libertarians think the way I've described above, and frankly I'm just as worried about people who see it as imperative for the state to engage in stealth-coercive eugenics (such as refusing to provide services and accommodations for deaf children whose parents knew that a particular embryo would likely be deaf). I've actually come across people suggesting that and it really bothers me -- it's like disability is being treated almost like a "vice" in that case, rather than a simple fact of reality that everyone will likely deal with at some point in their lives.

Anne said...

It seems scumbaggy to me for a physician to be blogging about his patient's abortion, complete with details about her life that would permit her acquaintances and co-workers to figure out who she is. It's bad enough to deal with the guilt feelings in private without having your agonizing personal decision put up for internet comment. I sincerely hope that Dr. Crippen was not blogging about a real patient, and that "Jenny" is just a fictitious person he made up for purposes of discussion.

tom1 said...

Hi,

I hope this comes out OK, because I am just getting over feeling pissed off as hell with Gonzo Girl and others over at Bad Science. I hope she doesn’t feel like I’m stalking her by following her here. :-) I certainly don’t mean this as a personal attack on her. It may come out as that, but please take this as a failure in my communication skills rather than my intent. I’m really interested in finding out what the viewpoint she was coming from was all about, rather than attacking her.

The main reason I’m posting is because of the Bad Science comments. I feel many posters totally misread what Ben and others were saying. The point of the article was that a number of articles appeared claiming that we were a more caring society because the number of Downs births had gone up. His main point was that this conclusion was based on faulty reasoning. None of the comments on the blog did much to refute that.

The article pretty much sticks to criticising the figures, about as close as he comes to revealing his own moral position on abortion and DS is:

“Crass and insensitive moral reasoning helps nobody. If I terminate a Down syndrome pregnancy, is that proof that society is not a warm caring place, and that I am not a warm caring person? For many parents the decision to terminate will be a difficult and upsetting one, especially later in life, and stories like this make a pretty challenging backdrop for making it. This would have been true even if their figures had been correct, but as is so often the case, for those with spare flesh to wave at strangers, their facts and figures are simply incorrect.”

Does anybody really disagree with this?

Having been involved in the development of the thread on Bad Science it felt, rightly or wrongly, as if people turned up to pick a fight and didn’t much care what anybody had really said.

By the way, Dr Crippen says on his Blog that he either fictionalizes real patients, or get’s patients’ permission before blogging about them. So, don’t worry on that account.

Tom

tom1 said...

GonzoGirl,

I just read your profile... I entirely forgive anyone who's favourite movie line is from To Have and Have Not.

Sharon said...

@Anne C, you always manage to write so well, and lay out your opinions with such clarity. Thanks for making those points. I share your unease with the way some people dismiss those speaking out against discrimination as being merely politically correct.

@Anne, thankfully, Tom has explained Dr Crippen's blogging policy wrt patient privacy. I don't know if I made it clear, that it was Dr Goldacre who used the word scumbaggy, not Crippen, whose blog I read now and then and who I may disagree with at times, but whom I trust from his words, works hard and does his best for his patients in a system riddled with problems.

@Tom, I certainly welcome your input in this discussion here and I'm sure Gonzo Girl is unconcerned.

I agree with you about Ben's article. My comment on the article he wrote, was that he "criticised the interpretation of the data." This was entirely right and reasonable, it's better to discuss issues from a complete and accurate reading of the data. Faulty reasoning helps no one.

I also agree that the comments there didn't discuss that but instead focused on how the lives of disabled people are often seen by other people. Gonzo Girl mentioned that she thought more DS births was good, not because it's more evidence of a caring society (as interpreted by The Mail) but because people will know more about how life can really be for people with DS when they have more chances to meet such people. Also discussed were the rights and wrongs of selective abortion, and some mention of some of the differences between the medical model of disability and the social model.

As for your quote from Dr Goldacre's post, I'd agree with most of it except this bit,
"For many parents the decision to terminate will be a difficult and upsetting one, especially later in life, and stories like this make a pretty challenging backdrop for making it."

I don't think these issues should be hushed up because they make a difficult decision harder for some parents. They're just too important.

I don't want to punish anyone, no matter what they decide. My own position on abortion is anti-abortion but pro-choice. I would like to see abortions made easier in the early weeks, with the morning after pill handed out like sweeties to all who want it, with perhaps (after much discussion) even a lowering the upper limit. I think that selective abortions for all but conditions that are fatal to the baby shortly after birth are wrong, but would not want to see it made against the law. I would welcome a reasonable, accurate debate on the issues, with less hyperbole and more attempts to understand each other's position.

I was much more annoyed by Dr Crippen's blog post and Dr Goldacre's link to his post with a title suggesting that even discussion of these issues is "scumbaggy" as it upsets potential parents.

You said, "Having been involved in the development of the thread on Bad Science it felt, rightly or wrongly, as if people turned up to pick a fight and didn’t much care what anybody had really said."

The people who came on the thread and who have first hand experience of disability and the prejudice they face, have a lot to complain about and it might be good if people would listen to them instead of feeling attacked by having their own views questioned. I haven't read the whole thread, it got too long. But there is real ignorance about how people experience life with a disability. For example, I and many others, think there is too much emphasis on cure and prevention in autism, and not enough on figuring out how to help people live and thrive with the condition. There are others in my position who are so focused on a cure that they have fallen for all sorts of stupid and dangerous quackery.

I've written before about my irritation with some of those who, like Anne C explained in her 1st comment, I'd see as natural allies in many ways, and with whom I agree on so many issues, don't understand disability issues. I also understand why "pity" is such a loaded word. I reject "pity" for what I have to do in parenting a higher need child, but welcome understanding and offers of help.

tom1 said...

@Sharon. What can I say? I wish you had posted on Bad Science.

Now, to respond:

“Gonzo Girl mentioned that she thought more DS births was good, not because it's more evidence of a caring society (as interpreted by The Mail) but because people will know more about how life can really be for people with DS when they have more chances to meet such people.”
This is an interesting statement, and one that didn’t really get addressed on BadScience through all the shouting. It seems to me that, if only for social reasons it admits that there is a personal cost to being disabled. It then goes on to argue that it would be better if more people paid this cost because there would be a benefit to the whole group. This seems like a good deal for the current members of the group and a bad deal for the new ones.

I am rubbish at dealing with disabled people (well, not if your just missing an arm, or something, but I’m sure you know what I mean) for precisely the reason Gonzo Girl mentions. I have very little practice. So I guess I agree that increasing the numbers might bring benefits. Equally one never knows, you might end up with ‘Downs Plague’ headlines in the Mail. Predicting the reactions of society as a whole is a tough business.

“As for your quote from Dr Goldacre's post, I'd agree with most of it except this bit,
"For many parents the decision to terminate will be a difficult and upsetting one, especially later in life, and stories like this make a pretty challenging backdrop for making it."

I don't think these issues should be hushed up because they make a difficult decision harder for some parents. They're just too important.”

I think we’ve hit one of the things I think people misunderstood. The point, as I read it, was that parents were in a difficult position and the last thing they needed was to be told emotionally loaded stuff about the ‘kind’ decisions other parents were making that was simply untrue. It seems to me that it IS a bit scumbaggy to tell parents contemplating an abortion stuff that isn’t true (whether for, or against) to further an agenda, moral or otherwise.

“The people who came on the thread and who have first hand experience of disability and the prejudice they face, have a lot to complain about and it might be good if people would listen to them instead of feeling attacked by having their own views questioned.”
People on BadScience can be kind of rough. On the whole, I find, they mean well. Even, or perhaps particularly, Dr Crippen seemed to me to acknowledge and be quite annoyed about the problems faced by the disabled (I would probably not have put the comments about the paralympics in quite the way he did.). One of the difficulties is that experience doesn’t necessarily make you right and people on the forum will challenge you regardless.

“I haven't read the whole thread, it got too long. But there is real ignorance about how people experience life with a disability. For example, I and many others, think there is too much emphasis on cure and prevention in autism, and not enough on figuring out how to help people live and thrive with the condition. There are others in my position who are so focused on a cure that they have fallen for all sorts of stupid and dangerous quackery.”
The dangers of quackery come up on BadScience all the time. It is a plague for disabled and {whatever everyone else is called} alike. Taking autism as a case apart, it is pretty much only the alternative medicine/anti-science movement pushing a cure. You DEFINETLY have everyone (minus a few trolls) at BadScience on your side on this point. If you say ANY cure is a bad thing, then that’s something else.

“I reject "pity" for what I have to do in parenting a higher need child, but welcome understanding and offers of help.”
One of the feelings that I came away with from BadScience was that people are sensitised to the word ‘pity’ and almost start the conversation with “I don’t need your pity’ (not you I hasten to add). The thread in BadScience ended with myself and a guy called The Nameless talking about what we actually felt that had been interpreted as pity. Unfortunately, nobody stuck around long enough to hear.

tom1 said...

@Sharon. The page you linked to gave me some stuff to think about. At the very least I think people are definitely less careful around disablist (new word on me) language than they are with sexist language. It can be all too easy to talk about a group of people you don't expect can hear you in a short hand way and say things that, if held up to the light, you have no choice but to back peddle away from like crazy.

It's a good example of why social change would be no bad thing. I think I remember reading the conversation as it happened. Was it on BadScience as well, or am I dreaming. Anyway, it, or a conversation very like it didn't quite strike me in the way it does now. So, thanks for that.

Michelle Dawson said...

I commented on Bad Science (for the most part, I'm a great fan of Dr Goldacre's writing) in direct response to earlier comments. None of what I wrote or quoted was challenged in any rational way. As on Dr Crippen's blog, there were a lot of personal attacks, and piles of extreme irrationality--very boring and not worth responding to.

But I disagree with the premise that issues important to disabled people should not be discussed, and accurate information should not be provided, on the grounds that this might make some people feel bad. This is the point Sharon made (though much more elegantly than I've done).

It's not "scumbaggy" to consider the causes and consequences of prenatal sex selection, and the same is true of selection with respect to different abilities.

tom1 said...

@Michelle,

"But I disagree with the premise that issues important to disabled people should not be discussed..."
What were the issues that you weren't allowed to discuss? I mean, there is quite appropriately a stronger demand for evidence on a blog like Bad Science than here, but apart from that. Of course that isn't to say that the Bad Science view of a story is necessarily correct, but if you disagree you will probably have to defend your opinion against some robust defence.

...and accurate information should not be provided, on the grounds that this might make some people feel bad
This is the main point for me that never got resolved on Bad Science. The information in the DS story may *technically* have been accurate, but it was being used to make a claim, 'society getting kinder', that created a totally false impression. Telling people that, in this sense, society is getting kinder IS giving people false information. I would be shocked if Ben Goldachre was against people having access to correct information presented in a proportionate way.

"It's not "scumbaggy" to consider the causes and consequences of prenatal sex selection, and the same is true of selection with respect to different abilities."
But I'd have said it was "scumbaggy" to give people misleading information in respect to that.

Michelle Dawson said...

In response to Tom 1, as I wrote above (sorry to repeat myself):

"I commented on Bad Science (for the most part, I'm a great fan of Dr Goldacre's writing) in direct response to earlier comments. None of what I wrote or quoted was challenged in any rational way. As on Dr Crippen's blog, there were a lot of personal attacks, and piles of extreme irrationality--very boring and not worth responding to."

But I also disagree with Dr Goldacre's (and Dr Crippen's) stated position that, because some people might feel bad, it's "scumbaggy" to raise concerns that are important to disabled people. Or to provide accurate information about differences in ability.

What Drs Crippen and Goldacre are demanding is unquestioning adherence to the "realities" of disability, according to their views.

They want discussion of major issues concerning disabled people to be shamed and silenced. They don't want their ideas tested (might make some people feel bad) and they don't want disabled people to get in the way of their certainties.

At least, this is what they have so far expressed. As a great fan of Ben Goldacre, I was surprised to see him take the position that some ideas should not be tested or discussed, on the grounds that some people might feel bad.

tom1 said...

Michelle,

Thank you for your post. I couldn't disagree with your interpretation of the Bad Science and Dr Crippen pieces. Dr Crippen rather complicated things with his digression into the Olympics, I can understand why his post upset you.

In so far as Bad Science goes, are you just refering to the text of the link to Dr Crippen, or the article as a whole. As mentioned I interpreted the 'scumbaggy' comment to refer to giving factually untrue information to parents. If you have a wider criticism of Ben's article I would be very interested to hear.

As for Dr Crippen, I will reread his blog and get back to you.

By the way, in coming here I realized that you folks had some what more reason to be offended than I had at first supposed. I'm still chewing that over. I just don't want it to come across like I'm busting in telling you you're wrong. It just bugs the hell out of me that we can read the same article and take away something totally different.

tom1 said...

OK. That took less time than I thought.

Dr Crippen's style makes defending him harder than it might have been. I can see a point in what he says about the Olympics that I have some sympathy with, but the way he put it isn't at all helpful. I won't defend that issue unless you're really keen.

"They want discussion of major issues concerning disabled people to be shamed and silenced."
I've looked and I just can't see where he says anything that I can recognize as this. Could you possibly supply a quote?

Michelle Dawson said...

In response to Tom 1, you are free to impose mental states on others ("upset" etc.), something that was boringly rampant in the comments on Dr Goldacre's and Dr Crippen's blogs, but this is likely to be inaccurate and certain to be unhelpful. It might be better to address the content.

I suggest reading the comments on Dr Goldacre's blog to see what I was responding to in the comments there.

I suggest reading what Dr Goldacre actually wrote, re the scumbagginess of anyone testing his and Dr Crippen's views of disability, and reading what Dr Crippen wrote.

Dr Goldacre supported Dr Crippen's views of disability (these being, according to Dr Goldacre, the "realities" of disability), and opposed other ideas or information about disability being expressed or discussed (this being "scumbaggy" on the grounds that some people might feel bad).

tom1 said...

Michelle,

"you are free to impose mental states on others ("upset" etc.).... but this is likely to be inaccurate and certain to be unhelpful. It might be better to address the content"
I am dissappointed if I've offended you. Again I'm imposing a mental state. This is an emotive issue and I'm not on my home turf here... I am trying as hard as I know how not to "upset" you. It is a distraction from trying to understand one another.

If we are including the comments on Bad Science then sure, there was definately some stuff about a third of the way in that I can see might have been offensive to you. I had thought you meant something that Dr Goldachre specifically had said. Could you confirm if you are unhappy with anything Ben said in his main article?

Am I right in thinking that the only thing you object to that was actually written by Dr Goldachre was the "scumbaggy" link to Dr Crippen?

"None of what I wrote or quoted was challenged in any rational way."
I agree there was a bunch of stuff that didn't get dealt with. That's why I followed you guys here. Personally I think it goes both ways. There seemed to be a lot of unwillingness to accept, what was for me, the central point of Ben's article, that the reasoning behind the "society is getting kinder claim" is simply wrong and giving wrong information to parents making these difficult decisions is bad.

tom1 said...

I realize that I can't spell Goldacre... ho hum!

tom1 said...

I was going to let this go, but the same thing happened with the word 'pity' over at Bad Science...

With respect to my use of the word "upset". Is it, or is it not the case that, in addition to an intellectual disagreement with Goldacre and Crippen you also have some kind of negative emotional reaction to what they've said? If so, please tell me what word to use when I refer to that emotional reaction. I feel like I am in a verbal minefield and may use the wrong word at any minute.

I may be being too defensive here, but let me just say in advance that I mean nothing bad when I say an 'emotional reaction'. I get them too.

Sharon said...

Tom, thanks for all your points of discussion. I wrote a reply to some of it, but it got so long and unwieldy, that it's easier to just make it into another post. Look here if you're interested.

lisadom said...

I read this last night and was quite overwhelmed personally by the excerpts from the article, and the sophisticated arguments circulating around it's rebuttal.

And then I wished I had stuck with the fashion blogs; I might have slept better.

I am with Nick and Jacob on this one. For all the over intellectualising of the arguments, you only have to look your, or anyone's actual child in the face to see how awful it is consider eliminating their existence.

Human beings have evolved not to leave behind their sick and wounded, their elderly, the less physically able or otherwise. We actually evolved to carry "the weaker" members of the tribe and we are the masters of the earth.

Brains that can perform heart, lung, eye, ear, and cleft palate surgery can also provide evidence based structured behavioural intervention; enhancing everyones quality of life.

Last night I dreamed of that creepy movie "The Island" and imagined what the world would look like if only the 100% perfect were allowed to live.

Yuk.

And I agree with you Sharon on the neurology. I think we are talking about a magic wand when it comes to changing the fundamental neurology of what constitutes autism. And I wouldn't wave my kids' personality away.
I would magic up enough resources to continue to provide comprehensive evidence based intervention and support for all kids with extra needs, and their families.

And my last thought goes to the childless amongst us who are longing with every fibre of their being for a child. Spending a fortune on fertility treatments or heart breaking adoption processes. Overflowing with enough love to support any child.

How could you wish any child away from them.

Thanks for raising this Nick on Downsdad, Thanks for talking about it so cleverly Sharon.

I'm going back now to look at frocks and shoes.

xx

The Gonzo Girl said...

Oh, I have to make a little correction, I didn't mean to criticise anyone for using the word Libertarian in a negative way, I can't blame anyone for doing that.
For a start, Ayn Rand was not exactly the picture of caring, sharing kindness, a fact that actually embarrasses a lot of Libertarians. :D
And then Libertarianism covers such a wide array of political views, from Reagonomics to Anarchy, it is a rather ambiguous (if that's the right word for it) term.
I'm more annoyed by people who call themselves Libertarians, just because they don't give a shit about anyone else, but then ignore the most basic principles of Libertarianism, that of personal liberty.
The most disgusting example of this hypocrisy can be seen in the comments to this vile article, about an autistic boy who got murdered by his father.
It sparked a debate of "who's gonna pay for all these special needs people."
That was their only concern: their taxes, the fact that the most basic personal liberty, that of actually living, was taken away from the boy, didn't raise that many eyebrows.
Some "Libertarians"...

PS:
@ Tom,
why were you pissed off with me?
Btw, glad you like Bacall, she's the bomb!
:D

tom1 said...

Gonzo Girl,

I thought I'd lost you!

A proper answer to the whole pissed off thing will take a little bit of time to throw together something coherent. We've had so much trouble with careless use of language that I'm afraid to rush my answer.

Tom

tom1 said...

Gonzo Girl,

I thought about it and it wasn't so complicated after all...

I disagreed, and still disagree, with a lot of what you and Michelle said (now that would take a while to address). You read meanings into a piece of text that for me just aren't there. Having said that, in the Bad Science discussion it felt like what you were saying came from alien place that did have validity to it. I hoped that as the discussion continued all this would be made clear, but all the interested people left almost as soon as they arrived. That's really why I was annoyed. The Skeptic community and the disability rights (or whatever it's called) community should be about engagement, yet there was more agression on that thread than I've seen on Bad Science in a long while and nobody learned anything.

Tom

tom1 said...

Gonzo Girl,

The article you linked to mentioned an 85% divorce rate amongst parents of autistic children. Is that correct? If you think it is, I'm going to squirrel that fact away for use in some later discussion.

Tom

Sharon said...

Hi Lisa. Thanks for sharing your thoughts on this. You bring up a great point; the pain those feel who dearly want a child but for whatever reason can't have one, and the difficulty so many face in trying to adopt. Aren't there loads of families also wanting to adopt children with disabilities?

The idea that we evolved to care for people with extra needs is interesting too. It's not something I know about and I'd like to learn more.

Yep, I wouldn't want the many little things that make Duncan who he is, wiped away, even if much of it can be explained in terms of his "disorder".

Hey, shoes and frocks are important too! I'd not be much good at this mummy lark if I was always nekkid. (Shudder)

The Gonzo Girl, thanks for that explanation. I don't know much about Libertarianism, but it was mentioned several times in debates around the recent US election. In the main, it seemed that the definition people applied to themselves was more of the not giving a shit about others variety than the personal liberty type. The 2nd one is something I could subscribe to; personal responsibility and liberty as a foundation for a better society.

That article makes me nauseous.

Tom, I'm all for the skeptics and disability activists coming together, There's a lot of overlap already and many of us fall in both categories. I do get annoyed at how so many skeptics swallow unthinkingly, many prejudices about disabled people.

I read a blog post recently that warmed my heart, combining skepticism and respect for neurological difference.

wrt 85% divorce rate for autism parents; it's bollox. It's just one of those urban legends that's passed about. Who did the study? How did they control for all the other things that cause relationship problems? Or is it just a feed-forward thing that if you have difficulties you might 'blame it on the autism' and admit defeat, because after all, 'nearly every couple with an autistic child, split up’?

tom1 said...

Sharon,

Interesting as always. One of the things that made me sad on Bad Science was that I don't think anybody there learned anything from anyone. Prejudices just got reinforced all round.

In so far as that 85% statistic goes. I am a little suspicious of it. A statistic of that sort would be nice as a semi-objective was of quantifying the difficulties involved in raising a child with a particular set of problems.

I'm not sure you can quite attack the statistic with your feed forward argument, unless they were very dishonest on incompetent in the way they collected the statistics. Having said that a brief search of Google seems to show a lot of head scratching as to where this statistic comes from. Dusting off my critical thinking hat for it's twice yearly outing and squinting my eyes in suspicion, you folks would probably be better placed than most to notice an 85% divorce rate. On balance I'll chalk it up as a huge lie. They seemed so plausible, they used percentages and everything!

By the way, since we've been talking about the problems with talking about a 'cure' for autism etc... What is your take on Jenny McCarthy? I mean she would seem to me to be a case of somebody from within your community pushing a cure, rather than having it imposed from outside.

Vogon Poet said...

Tom,
I forgot to add this blog to my blogroll, I thought I already had, it's there now, so I can follow.

Anyone who writes a nasty piece to justify a boy's murder, will just cough up any old tripe to prove their point.
That was her sole intention, to make Autism sound like it's hell for parents.
I'd definitely give that number a critical look before jumping to conclusions.
50% of all marriages end in divorce, anyways, (depending on the country) so you can't say 85% (if that number is even correct, which I doubt) break up, because of their child's disability.
My parents are divorced, too, my Autism had absolutely nothing to do with it. Ironically my odd childhood behaviour was explained by my parent's divorce.
PS:
I didn't bother to look at the Bad Science comment thread again.
I don't see much point in wasting energy on completely fruitless discussions.
Gonzo

Vogon Poet said...

Now this thread is so big, I missed some interesting bits.

@ Sharon,
Lisadoms point:
"Human beings have evolved not to leave behind their sick and wounded, their elderly, the less physically able or otherwise."

is what's being researched in evolutionary psychology

tom1 said...

vogon poet,

"50% of all marriages end in divorce, anyways, (depending on the country) so you can't say 85% (if that number is even correct, which I doubt) break up, because of their child's disability."
For sure, but IF the statistic was true then it would certainly tell you something about the experience of raising an autistic child. It clearly wouldn't be that all those relationships failed solely for that one reason, but (and I haven't reread it to verify) I don't think that was even what the original stoary claimed.

Sharon said...

Tom wrote, "Prejudices just got reinforced". Yep that tends to happen when the ideas that one group try to express seem so alien to the majority. It also often happens that people get caught up in the way someone expresses themselves rather than the content. It might be easier if the ideas are expressed using less emotive language, but that's not the way that some people communicate.

The divorce thing is a red herring. It's just a fairy tale. I could as easily say that 90% of marriages end when the partners support different football teams or political parties or have annoying in-laws, and that tells you about the experience of those things. There's no basis for the number. You like accurate data don't you? You agreed with Ben's premise that drawing conclusions from flawed data is wrong? Well the autism divorce number is pure invention.

Jenny McCarthy is an idiot. That is an outright and well deserved ad hom. I wrote a bit about her here, but there's a whole website dedicated to explaining just how wrong the woman is. The autism community is fairly divided. I'm not on the side of Jenny and her cronies.

Gonzo thanks for explaining further why that divorce invention in bandied about. That article was twisted. Thanks too for more information on evolution. I'd like to be able to use that information but needed to know where it came from first.

tom1 said...

Sharon,

My view of Jenny McCarthy is not a million miles away from yours. The reason I mentioned her is that I've been wondering to what extent this whole 'cure' thing is imposed on disability by society as a whole, and to what extent it comes from disabled families themselves.

I kind of feel there might be a bit of No True Scotsman type reasoning going on when people state as a fact that Downs or Autistic families don't want, or need a 'cure' (as I think happened on bad Science).

As for your comments about prejudices getting reinforced. I agree with what you say. Unfortunately, since the majority are, I think, largely ignorant that there is a problem, it falls disproportionately on the minority to explain itself in ways the majority can understand.

Tom

Sharon said...

I don't think anyone says that "autism families" (meaning families with a disabled child) don't frequently want a cure, but that most of the autistic (or otherwise disabled) people themselves don't see a cure as the most important or even as a desirable thing.

Parents are fairly split on the issue.

tom1 said...

@Sharon. That is just the kind of point the Bad Science discussion was missing. It's amazing how ones thinking can run in tracks and fail to see perfectly sensible things like this. I'll go away and have a think about what you've said.

tom1 said...

Hot on the trail of that 85% divorce statistic...

The only plausible looking statistic I have found so far is:

"Siegal (2001) suggests that the divorce rate for couples with a child with autism is the same as that for the rest of the population. This figure, however, only applies to the USA and has not yet been corroborated"
http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=307&a=3342


This at least has a reference to:

Siegal, B. (2001). Quality of life: preventing mental separations and legal divorce. What we (don't) know about the effect of autism on divorce, Advocate, 34(2), pp. 26-29.
Available from the NAS Information Centre


If this is true, it would seem to put an upper bound on how terrible and stressful raising an autistic child is.

Tom

tom1 said...

I just read your piece on Jenny McCarthy. It's sad about Jim Carrey, he makes interesting movies these days.

Presumably these people mean well and are not all completely stupid. I struggle to find a way in to their mind set though. At least they aren't Scientologists.

Tom

tom1 said...

All,

Sorry about the snow of posts I'm generating. I find all of this very interesting and I've had a dull day waiting for stuff to happen (I work in IT).

Anyway, this is the type of story that would have coloured my thinking before talking to you guys:

http://news.bbc.co.uk/1/hi/england/hereford/worcs/7783250.stm

Now I wonder whether this is more likely to happen with parents of disabled children than the population at large (I assume you would say probably not). That would be an assumption that I definately made on Bad Science.

Tom

tom1 said...

OK. You guys already know that that divorce statistic was wrong and you aren't pedants like me, however I couldn't let it go. I've found as near to a primary source as you can find for a made up statistic.

ABC News:
http://abcnews.go.com/Health/AutismNews/Story?id=6173652&page=2
quote the National Autism Association (good friends of yours I'm sure !-)) for the 80% statistic. The NAA now say:

"NAA is presently conducting a national divorce survey of autism families. Several organizations and news outlets have used the often-quoted autism divorce rate of 80%--NAA hopes to confirm or update that percentage before referencing it in its program materials."

They may or may not be talking about their online survey:

http://www.nationalautismassociation.org/htmlpages/divorce.htm

Where they again say: "The divorce rate in the autism community is estimated at 80%."

So if I've got this right, the NAA are the source of the quotes for the 80% statistic, even though they don't know where it's come from and they are going to use an online poll to verify it. Very reliable I'm sure.

Since I'm having a bad stats rant. The 50% divorce rate in the *normal* population seems to be a bit of a myth as well, more like 20-30%. Some other stuff by Siegal/Siegel? Seems to indicate there way be a 20% higher divorce rate amongst parents of disabled children but that studies are few and far between. So it could be that parents of autistic children have fewer divorces than parents of most disabled children.
http://books.google.com/books?id=FVczc7EkBGsC&pg=PA137&lpg=PA137&dq=siegel+Autism+divorce&source=web&ots=MnlNCTUI6V&sig=QEwf7R0xU1YnTzZsLcE_23TaFkY&hl=en&sa=X&oi=book_result&resnum=1&ct=result#PPA138,M1
p.137/138

I think I'm done. I'll tone down the nerd now.

Tom

Sharon said...

@Tom, thanks for the posts. It's a pleasure to have a discussion with you.

I agree that it's a pity about Jim Carey. He's in one of my favourite films, but he's so wrong on autism. Calling kids like my boy a warning from history and the canary in the coal mine, doesn't endear him to me. Not that he's bothered!

Thanks for your excellent detective work on the divorce number. It's typical of the level of accuracy applied to autism discussions that a totally made up statistic is bandied about that way. I didn't know that the NAA, a very biased group who believe, "autism is no longer considered a heritable, genetic disorder. It is an environmentally triggered, therefore preventable and treatable disease," are the authors of that myth. It's not a group I'd align with! I just looked at their instructions for parents of a newly diagnosed child-utterly awful.

The BBC story is so sad, especially. I remember when it was 1st discussed. I'd prefer to wait until the inquest is over to see if it's explained what actually happened to the young man.

tom1 said...

@Sharon.
Certainly, it is a terrible story. One of the 'pro-disability' posters called people like the mother in the story scum. I don't see it. Just sad.

Having said that... do you know whether there is any association between parents being violent to their children and disability? There is a surface level plausibility... disability => stress => bad things, but the divorce thing doesn't seem to hold up.... maybe this doesn't either. It would be really useful to know this in any future Bad Science type debates.

Tom

Amanda said...

I have literally seconds to write this in so sorry for a lack of nuance:

I think deciding to selectively abort someone on the basis of disability should be difficult.

That difficulty is a sign that someone has a working conscience, whether the person making the decision, or people around them.

Sharon said...

Too right Amanda.

There's enough nuance is what you wrote. It's just true.

Amanda said...

Yay, I have a few more seconds -

WRT cure/family/disability/society-as-whole -

What families believe is often a reflection of society as a whole. They are not divorced from it any more than any individual is divorced from it. Society affects everyone, and everyone affects society, to varying degrees and in varying ways.

So I don't understand the distinction.

Sharon said...

Amanda said, "What families believe is often a reflection of society as a whole. They are not divorced from it any more than any individual is divorced from it. Society affects everyone, and everyone affects society, to varying degrees and in varying ways.

So I don't understand the distinction."

Amanda, have I said here that I think there is a distinction? It seems obvious to me that they are linked, private choices have public consequences. But the private choices are often as a result of the zeitgeist. If the public representation of autism and other disability is of horror and devastation then families will be more likely to make decisions based on fear and ignorance.