11 Dec 2008

More dicussion on prenatal testing, disability and accuracy

A recent post generated some great discussion. My reply there became too long, so I've put it down as another post.

In an earlier comment I wrote:
“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.”

(I should have made it clear that this is just how I interpreted what The Gonzo Girl had written, but I could be wrong. I hope I have not misrepresented her position.)

In response, Tom wrote:
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.
I think that in many ways, being in a misunderstood minority is a reason for some of the difficulties disabled people face. Like Tom said, many people never encounter (at least not knowingly) disabled people, especially those with learning disabilities or atypical neurologies like autism or Tourette's. I'm not sure what he means about this seeming "like a good deal for the current members of the group and a bad deal for the new ones."
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 woman from the DS society said that it seemed that parents are "thinking more carefully" and that there now is "greater inclusion and acceptance, with mainstream education having a huge role. We think this plays a part in the decisions parents make." There's nothing wrong with her saying that, but the release of and focus on badly interpreted data is wrong.
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.
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 really like the Bad Science blog/column, forum and the related blogs and appreciate the work they do in tackling quackery and bad science in all its forms. Heck, Ben linked here a while back and generated more hits in a few weeks than I'd had in the couple of months before. I've written about the importance of accurate science, as has Michelle Dawson many times (she's an autism researcher) as well as many of the people on the Autism Hub blog aggregator.

I'll just say wrt a cure for autism, I think it's as likely as a "cure" for homosexuality, and the idea of something that would cause such a huge change in neurology is worrying to me. But should it be available and safe, I would let my son decide for himself when he's an adult. If by cure you mean, helping him to communicate more effectively, regulate his impulses and learn how to maximise his talents, then fine, bring it on. As for your question on terminology, in the context of these discussions I say non-disabled. Some say, temporarily able-bodied.
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.
Disabled people have been made objects of pity for so long. Some charities have misguidedly presented a face of disability, usually a poor, innocent child, that is as pathetic and needy as possible to evoke pity and funds. Pity usually precludes respect and dignity. Empathising with another's pain or difficulties is fine, especially when it's understood that many of those problems come from other people's attitudes and systematic failures.
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.
I appreciate Tom for taking the time to read that. There's a good (short) post here about disablism and language.

In response to Michelle's comment, Tom wrote:
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.
I think Ben Goldacre was speaking out against inaccurate numbers. I don't doubt that there is data suggesting that conditions now are better than before for people with DS; higher life expectancy, fewer people in institutions, more people employed. There probably is evidence somewhere of a more accepting attitude to the condition in society at large too. The DS births data however, wasn't evidence of such a thing and I agree that it's wrong to interpret it as such like many media sources did.

Michelle wrote:
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.
I agree with this.

Tom responding to Michelle again wrote:
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 referring 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.
Dr Crippen just went weird and ranty. I felt Dr Goldacre's post was fine except for this quote, "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've explained why already. And yes, I was upset by the text of Ben's link to Dr Crippen's article, never mind his linking at all to what I considered a badly written post full of speculation and negative stereotyping.
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.
If Tom is referring to Dr Goldacre's article, then I think he and I have interpreted it the same, though I disagree with the small section I've already mentioned. I'm not offended, I just don't agree with all the ideas presented.
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.
I thought Crippen's paralympics rant was ridiculous and his trying to defend it by saying he thinks the olympics is a waste too, didn't work. He was purporting to read the future for his fictional patient, and foresaw all sorts of dire consequences should she proceed with her pregnancy with a DS child. It was plain silly and I commented there once. I didn't bother to try again as he was clearly uninterested in a reasonable conversation, and many of the other commenters were extreme in their views.

As for assigning mental states onto others, it's best just to discuss the content of what they wrote. It's not possible to tell if they are offended or upset unless they directly say they are, like when I wrote in my post that I was saddened by the comments on Crippen's blog and more so by Dr Goldacre's link text.
"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.
Well yes, the discussion in the comments got derailed from discussing the original post. But there were many issues raised that are important some of which were dismissed with a jibe about the author's emotional state. Some of the posts (I've just had another look) are obviously from people who are against the provision of all legal abortions and there's a strange comment trying to compare selective abortion to walking away from or killing off a child who acquires a disability; not at helpful or relevant. I think you Tom, were one of the few people who tried to actually engage with what Michelle and The Gonzo Girl wrote, instead of scoffing at them.

11 comments:

Ettina said...

"I'll just say wrt a cure for autism, I think it's as likely as a "cure" for homosexuality, and the idea of something that would cause such a huge change in neurology is worrying to me. But should it be available and safe, I would let my son decide for himself when he's an adult."

With me, I would like to examine why some autistic people feel they need a cure. Are the problems they are trying to solve best solved by a cure?

tom1 said...

Ettina,

I am way outside what I know anything about here. However, my partner is a primary school teacher...

In the past few years she has had two kids on the spectrum in her class. One pretty much screamed all day, the other was withdrawn, sometimes violent. The other children definately didn't know how to respond to them. They were being failed by inclusion in mainstream school and, again going by second hand descriptions... the whole thing seemed to me quite hard and lonely. The parents seemed to have gotten the idea (simplifying hugely here) that going to a special (is this the right term?) school would be an admission of some kind of failure.

My question on the basis of what experience I do have is, are all autistics high functioning enough to be able to meaningfully want or not want a cure (I'm probably displaying my ignorance, I know)? Also, are we talking about an ideal world, or a world where society isn't particularly knowledgable, understanding or kind?

This is all academic since there is no cure, but still... I confess I have mixed feelings about curing somebody of something so all encompasing, my gut reaction is that you are coming very close to replacing one person with another.

Would it make any difference to people if the cure was to some extent incremental? Take this pill for a year and by the end of it you'll be 'normal'....

Sharon said...

@Ettina, that's a good point. I'm trying to bring him up in such a way that he never feels the need to make such a massive change to his neurology. I talk about autism to him and his siblings though he doesn't get such abstract concepts much yet, so I don't know how much of it he understands.

tom1 said...

Wouldn't it be very hard to love ones child and also want to change something so fundamental about them? I hope my attitude to my son would be the same as yours Sharon.

Out of curiosity, given that you love your son for who he is, how would you feel if he wanted a cure?

Sharon said...

@Tom, the children in your wife's class weren't really being included. Just plonking someone in a mainstream school isn't proper inclusion. They were obviously unhappy and their needs were not being met. Perhaps they would have been better in a special school but if their parents didn't want that they might have been better working to ensure the children had the right support in place.

Like many people, I don't like the terms high and low functioning, when people are more complicated than that and usually have a mixture or strengths and weakness of various kinds. I think that a person who cannot understand the concept of a cure (should one exist) and cannot give full consent, shouldn't have such a thing done to them.

Sharon said...

Oops just saw your other comment Tom!
Thanks for saying that. Do you have children?

If Duncan wanted a cure, I'd make sure he understood the implications fully, dig deep about potential problems, see who had it and how it worked out, and if he still wanted it, I'd move heaven and earth to help him. I'd feel scared as hell though.

tom1 said...

Sharon,

I've got a son. He turned 1 a few weeks ago.

I don't know how I would have felt a few years ago, but my partner and I went through enough, for long enough (not nearly so much as some) that the Downs discussion that started all of this wouldn't have been enough to stop us. For a number of reasons we came up as high risk for chromosome abnormalities (high risk still seemed pretty low, but still..) so we did think quite long and hard about all this. I suspect we'd wouldn't have gone through with it if there had been a real world high chance (a lot more than 1%) that he would have had something that would have made his life short and painful, but aside from that... For the record, we felt no pressure from the Whittington to have an amneo or do anything we weren't comfortable with. They did seem weirdly afraid to talk about statistics though... I did (and was rubbish at) a maths degree and knowing the odds is comforting to me. In the end we must have had nearly a dozen scans which was kind of cool, but inevitably then they see abnormal stuff (who isn't abnormal in some way), which may or may not mean something and you worry until the next scan.

The funny thing is, talking about how difficult it is or isn't coping with a disabled child. I had no idea how I was going to cope with a non-disabled one. It scared the heck out of me. I don't think I was capable of feeling more overwhelmed by what I was getting myself into. The amount I didn't know was huge.

Since we're talking autism at the moment, we've got the whole thrill of the MMR coming up. My partner knows intellectually that MMR is safe, but can't bring herself to do it, so he's going to have the single jabs when the time comes. I'd do the MMR, but it's better to have the single ones than none at all, right?

Anyway, it doesn't give me much of a window on the world you guys inhabit, but we had quite a few moments when we thought we might have an *abnormal* child. In hindsight, I don't think those moments were as sad as the moments when we didn't think we were going to have a child at all.

**********************
In reply to your previous post, apologies for the 'high' and 'low'. My bad! I think you're probably right again about what to do if people can’t make a meaningful choice for themselves. The one thing I would say is that presumably it is possible to be unhappy because of ones condition (I mean that in the general sense of physical, mental, where you live, place in the world etc...) without it being really possible to understand why. Or is this not generally the case? I can see an argument for a cure for somebody who is incapable of making a choice if there parents sincerely believe they are unhappy/suffering and would be happier if they had the cure. Maybe I am drifting off into being too academic and hypothetical here.

Tom

The Gonzo Girl said...

Yep, that's exactly how I meant it!
:)

Thanks for pointing out all the things, I meant to say, before I got overwhelmed by all the attention my two comments attracted.

I'm also grateful, that you mentioned that these right-wing anti-abortionists, are not only completely missing the point, but how their bigotry is also counter-productive to the whole debate.

PS:
I cannot believe there is a whole thread about this on the Bad Science forums... :O

Sharon said...

Hi Tom, and thanks for your answer.

I like what you say here:
"The funny thing is, talking about how difficult it is or isn't coping with a disabled child. I had no idea how I was going to cope with a non-disabled one."

That is so true for all parents. We just can't say what it'll be like or how we'll cope which is why I speak out against selective abortion. I've been asked a few times, and have tried myself, to imagine what my autistic child will be like as an adult. But I can't say, no more than I can foresee what his siblings will be like.

I'm happy to hear you have a son, I'm sure he's a total cutie. I think it'd be harder having problems in conceiving a much wanted child than it is to parent one with disabilities.

I'd recommend Autism's False Prophets for a clear explanation of how the autism/MMR misinformation started. After reading that, there's less chance that your partner would fear the MMR. I hate the idea of those GPs preying on people's fears to sell the single jabs too, but like you said, it's far better than not vaccinating.

On your last point, parents have to decide for their children all the time. It becomes difficult when the decision is for some perceived benefit that may or may not really help the child. I was disgusted by the Ashley X case, even though her parents presumably believed they were acting in her best interest to lesser her suffering. It's tricky. Parents can be wrong.

The Gonzo Girl, thanks.

tom1 said...

Sharon,

Thanks for the recommended reading.

I don't really disagree with anything you say, one thing did occur to me though....

I've no idea what the name for it is, but there is clearly a phenomenon whereby people are willing to take much greater risks from doing nothing than they are from doing something (see MMR). Either one is just as much a choice, yet somehow it isn't.

It seemed to me that there was a parallel with you comments about whether or not to (do nothing and) keep a disabled foetus, or (do something and) have an abortion. It's odd that faced with uncertainty under these circumstances people don't tend to choose the do-nothing option.

therextras said...

I'm late coming into this, but wanted to say I thought it was a good discussion. Thanks, Sharon. Barbara