Mighty Moloch, cure me of my severe allergy to the discourse of the “cure”

well, but michael, here’s a proposal you may not have considered:

maybe people should think in terms of mitigation and accommodation rather than cures.

Assuming we are not killed by sudden trauma, most — I want to say all — of us will in time acquire one or more chronic conditions. I’m quite able, but at 56 I know of at least five conditions that require some management and accommodation. All of us need to understand that health is about adaptive functioning, not the absence of illness.

One reason I think “cure” is so much more appealing to people than “reasonable accommodation” is that cures are in the hands of specialists while accommodation is up to everyone all the time. For a cure, I can maybe donate some money or “raise awareness” by posting the color of my DNA on Facebook, but I can’t do any of the actual work, because I’m not qualified. Accommodations become much more a burden on me, though, because then there are things I can do–or things that can be done that will change how I do the things I do.

Basically, cures are popular because people are petty and self-centered. And that’s what needs a cure.

So what is your position here? That parents who are skeptical of more effective mitigation techniques should be taken seriously? Does that fact that we are talking about mitigation, but not a cure, strengthen or weaken their position? I really would like to know what your actual position is.

But as a mother of two little boys with Down syndrome, boys whose identity, personality, appearance, is linked to that extra chromosome, my ability to rationally argue my point is seriously compromised.

This is the key takeaway for me. I don’t think people with these disabilities or their caretakers are selfish, but the enormous sacrifice and hardship lead to enormous pressure to justify the entire experience. You could probably simplify this and just call it cognitive dissonance resolution. But really, why should we take the advice of those people who are compromised, both emotionally and by their stake in the issue? The people for whom this research is relevant are those who are thinking about having kids in the future. I’d like to see funding for it because if I have a kid with down’s syndrome, you can bet that I’ll take advantage of any kind of treatment available whether you call it mitigation or a cure. If other people choose not to, I guess that’s a choice they can make on their own. But I’ll point out that there are substantial externalities to making those types of choices. I’m not sure you can argue that it’s not other people’s business to ask whether they should be given complete freedom to make them.

lilwatchergirl: Even in this excellent blog post, the cited comments and quoted articles are by non-disabled people.

OK, I guess, but my only citations go to that NYT thread. Oh, yeah, and to Allen Iverson.

Among the many writers worth reading on this subject, two are Lennard Davis (who looks at the history of our modern concept of the ‘normal’) and Professor Colin Barnes (who outlines the issues clearly, throughout a prolific career of writing on the subject).

Thanks! I am pleased to count Lenny among my good friends in academe (his Disability Studies Reader is a great place to start), and Colin Barnes’ work appears numerous times on my Disability Studies syllabus (copies available on request!). Thanks also for the link to the Leeds Disability Archive! I can also recommend Temple’s Disability Studies blog, and some time ago we had occasion here at CT to talk a bit about this remarkable conference.

And finally, yes, while the disability/impairment distinction is fundamental to the Disability Rights Movement, especially in the UK, it’s worth checking out some revisionary work on this: e.g., Mary Crossley, “Impairment and Embodiment,” Americans with Disabilities: Exploring Implications of the Law for Individuals and Institutions, ed. Leslie Pickering Francis and Anita Silvers (Routledge, 2000): 111-23, and Bill Hughes, “Disability and the Body,” in Disability Studies Today, ed. Colin Barnes, Len Barton, and Mike Oliver (Polity Press, 2002): 58-76.

“I am not sure which Rich@4 you are referring to.”

crooked timber’s dynamic comment-numbering system strikes again!

(rich puchalsky’s comment #6 was #4 when m.b. wrote. by the time you read this, it may not be #6, either, for all i know.)

@ #9/#10:

Silly Michael. Don’t you know that only the ‘disinterested’ can be objective? That’s why only men can look ‘objectively’ at gender, only white people are objective about race, etc., etc., etc.

Seriously.

Michael, I really like this in one of your replies: “I don’t think my ability to argue rationally is compromised by my status as Jamie’s father. On the contrary, I think I have an informed view of Down syndrome as a result.” Yes. There are some things that have to be experienced when the subject is “What’s the experience of this like, and what can/should change about it, and why?” Ignorance is (partial) disqualification – there’s no detached perspective, only ignorant ones, when it comes to human issues.

At the risk of crossing the streams, I think there’s an old-fashioned legacy at work in a lot of people’s ideas about this stuff, including mine, that is in part Cartesian: the idea that we can actually set aside all the specifics at get at pure truths. But there are no truths without all the specifics, when it comes to lives, and what they feel like, and what they mean. There are contexts in which I think it makes sense to talk of Life or Gaia or Goddess or what have you, but not when it comes to questions like this one here. Until people know what a kind of life is like, they are simply not qualified to discuss what’s good or bad about it, what should change about it and what should change in the world around it, any of that stuff.

At best we can approximate and associate, make comparisons, and like that. It’s just not the same.

Michael: Okay, that’s clear now, thanks.

barebones: In the linked article the quoted women specifically acknowledged that she could not talk about the issue rationally. I’m just taking her commentary at face value. And we are all stakeholders, actually. Some people are future parents. Almost everyone pays taxes. If there were a mitigation method that was effective enough to substantially reduce the level of support required for Down syndrome kids, both for their caretakers but also from government funded sources (educational accomodations being one of the most obvious), I think everyone would have a right to participate in that discussion. And I would question the wisdom of taking advice from a person who, as part of their argument acknowledged they were compromised, but argued that we should not pursue mitigation techniques because they were too effective. Maybe at this stage of research this discussion is premature, but it wasn’t clear to me intitially where Michael was going with this.

My reading on the potential cure/mitigation is that it would reduce the rate at which the cognitive deficit (which is mainly a matter of accumulating learning at a lower rate) increases. As such we are probably not talking about a cure, but about something which can lower the severity of future cases. If that is the case, than the disabled individual who is starting treatment has not yet established the disability as part of his identification. Such a mitigation would not change his identity, but allow him a life trajectory closer to the societal norm. This is quite a different thing than be offered something to instantly and magically cure someone of a disability they’ve had for a long time.

Now there are likley to be tradeoffs. How difficult is the treatment, which I assume must be applied over a long period of time (perhaps a lifetime)? If it is as simple as taking a pill (and adverse side effects are minimal) it should be a clear choice. The compassion the disabled brings out in you is a a result of your efforts to mitigate his symptoms. But if that can be effectively done via medicine, it won’t feel the same, but still has the effect of reducing the mismatch between the disabled and the norm. I can’t imagine withholding the treatment, so that I can feel good giving ameliorative care that wouldn’t be needed if I had OKed the treatment.

I doubt this tradeoff will happen to Michael. Most likely it needs to be started during infancy. So I doubt he will have to make any hard choices. This is more an issue for future parents not for current ones.

In many families, a disabled child who needs extensive care, emans that the opportunites for the other children are seriously effected. The families finances, and the effort to provide ongoing care, often means that the other siblings can’t afford college. The externalities can be rather high.

The trouble with “mitigation” as a rallying cry is that it conflates two ideologically opposed strategies, which occasionally even compete for actual public resources as well as rhetorical bandwidth. Call the two ideas “better wheelchairs” and “better ramps.”

At any given state of technology, a pragmatic middle is almost always in clear focus: seed money for Dean Kamen’s contraptions, and ADA-friendly building codes for the new village hall. But there is a continuing dialogue, and a natural tension, between mitigations that rely on (and by exercising, perhaps strengthen) our communitarian will, and mitigations that provide autonomy even where that will falters. And this dialogue is really about community itself, rather than about disability.

Of course, there is already a “cure” for Down Syndrome, namely abortion.

This is just crazy talk, hysteria. Everyone knows that “normal” means white, male, and Christian. Any deviance must be cured. The body politic must be kept pure. That’s why Tiger Woods must convert to Christianity. Accomodationist talk of ‘mitigation’ just echoes Munich 1938. Anyone who can’t see this probably needes a hysterectomy.

[I’m probably the only one who finds myself hilarious.]

29:
Well said.

Those parents who would deny their children the mitigation of a genetic disability remind me of those parents who rationalize telling their children that Santa exists because of the look on their faces at Christmas time.

Anyway Michael, I don’t know why you’re banging on about cure vs mitigation in this post. The question at the end, which just mentions “cure”, just seems like one of those “what if?” hypotheticals left as a last thought for the reader.

No, 29 is not well said at all. Because it assumes exactly what’s under dispute, namely whether Down syndrome is in fact like astigmatism. One might think some actual knowledge would be helpful in answering this, but John, Mitchell and Alex apparently disagree.

John: suppose someone offered you a drug that would fix your eyes, but also leave you with no interest in sports or surfing? I reckon you’d say, No thanks, I’ll keep my glasses. On the other hand, in a world without glasses, you’d probably decide that being able to drive was essential, and surfing an indulgence, and take the pill.

But Down Syndrome isn’t anything like the package of bad-eyesight-plus-surfing, I hear you say. OK: How do you know?

If possible, disabled people should be deciding for themselves whether or not they want to be “cured”. That’s often not practical, but consider a related question.

Everybody has some mild disabilities, in the sense that they function below the norm in some areas. I currently need reading glasses, and weigh 10 kilograms more than optimal. And I’ve always been bad at recognizing people’s faces. Would I fix these “disabilities”, if I easily could? Yes, of course! Would it change who I am? Yes, a little. So what?

Does anybody have a different answer? If not, this might be evidence that people with disabilities would generally want them cured.

Alex– I’m all for science, but have trouble coming up with experiments that will let one say for sure which positive parts of Down syndrome would have to go away if it were cured. One problem is that the terminology we’re using is horribly vague, so it’s difficult to even state hypotheses.

I do think we have to cede that being clever has drawbacks, which are avoided by those who can’t be clever. So there is something to argue about. Personally, I’d hope there was a better way to avoid the drawbacks of cleverness.

Mostly, this reminds me of people say i shouldn’t take [exactly those same norepinephrine-boosting drugs, coïncidentally] because they enjoy art made by people going through important-character-building melancholia. I think those people should fuck off, though i can’t really tell what you are arguing.

I don’t think there have been any bad experiences that have been good for me, except by accident. I thought that was mostly something conservatives thought. I will sign up for the decadent cure-all.

The glasses example somebody brought up is an interesting, if slightly more trivial example of the things Michael is talking about. I’ve had to have glasses for some thirty years now, after getting them when i was five or six (they said I would “grow out” of them. Ha!). They’ve become so much a part of me I don’t really notice most of the time. I wanted to, there is a cure available, laser eye surgery, which would mean I’d never need glasses again. But I won’t take it, because my “handicap” isn’t one in day to day life, doesn’t affect my quality oif life and any benefits from this cure are too slight to take the risks involved. Besides, without glasses I’m not me.

For people and their family with much more complex disabilities/conditions I’d say the rational position always is to be skeptical of any cure, especially if the condition you’re “suffering” from is stable and manageable. There are no magic pills and any form of treatment brings risks, side effects and unforesee complications with it.

One personal example is what happened to my partner. She long suffered from chronic kidney failure, retaining just enough kidney function to not need dialysis, until last year. This spurred us into going into a living donor programme, after we had talked about it for some time beforehand. This operation, in which a kidney is taken from a living donor and implanted is about as magic a bullet you can get in medicine, in one stroke freeing a patient from the tyranny of dialysis and returning kidney function to normal. Yet despite this we both knew that there were risks involved as well and that it would still not be a magic cure. Even leaving out all the other complications she had, she still will need to take immunosuppresant drugs every day for the rest of her life and hence be very very careful about catching colds or flu and such. So no airport travel for us e.g.

Educating the family about this, that the operation will not mean she will be leaping out of her hospital bed the day after, when even the doctors were saying that most recipients do feel immediately better afterwards, was difficult. Because we are trained to think of cures as magical potions rather than complex procedures that will have side effects and which need to be carefully managed.

(Continued because too long)

In Michael’s case we’re not even talking about a cure, but the possibility of research perhaps leading to something that might have an impact on Downs syndrome, but of which nobody can say how it will affect a particular person with the syndrome (like Jamie), yet quite a few bystanders read this to mean it can be cured and anybody skeptical of it is selfish or handling from suspect motives.

As anybody with a chronical illness/handicap and their family/friends know, any new therapy or cure needs to be carefully balanced against the status quo. Terry Pratchett, whose condition is not stable but worseing, does embrace any half sensible treatment that is pitched to him, but in his case that’s understandable. From the stories Michael has told about Jamie, he is actually doing pretty well and I can understand them not jumping up and down with joy for an unknown “cure” with unknown side effects and relevancy for their particular situation.

Because that’s the difference between us and them: anybody without personal experience with this condition is talking about generalities, while for those who do have the experience it’s the particulars that matter. In general, “curing” Downs syndrome is a good thing, but drill down to the particulars and it might not be, for far better reasons than assumed by outsiders…

Michael@37,

Now I understand something I didn’t and I need to thank you for it because a friend of mine has a daughter with Down Syndrome and I am not hypocritical enough to say I struggle with that, as amongst other things, I have to admit that we would have gone for abortion. To use the popular TV series reference: I have now learned to empathize with the House MD, Cold Case (et al.) deaf parents and deaf kids that don’t want an implant.

At the risk of not having anyone reading anything beyond that confession of mine, I have a real issue with your representation of Gadamer and Rawls. I think it is at the heart of the discussion.

Let’s take Rawls. Whatever the failings of his reasoning, the clue of his thought experiment isn’t that people take a stance in a disinterested way. As far as I can see he designed it to allow people to take a stance in multiple interested ways; with a view to different horizons if you will.

In the present case that would, as per mpowell, include not only the parents that have fine level of humanity with which to really care, other caretakers that enjoy the likeable nature, people as me who merely live in a society that needs to determine what is the best level of support as well as obviously people that have the syndrome. Finally I think out of all these perspectives and all these roles the one that will dominate in the tought experiment would be that of ‘what if I would have the syndrome? – what would I want to have done and not done?’. Most people I guess here would go for cure or mitigation or whatever the word is that doesn’t push buttons on either side of the discourse.

But you’re right of course if your point is that for us to take that role (of somebody that has the syndrome) is impossible. Whilst that points to the flaw in Rawls’ reasoning it also does in what’s apparently appealing to you in Gadamer. If horizons are so radically different that they allow, & only allow, communication via the horizon of a caretaker then the latter horizon isn’t worse but also not better (if my reasoning is OK, which I don’t know) than anybody else’s.

Personally, I don’t think the horizons are mutually uninterpretable are radically intranslatable; at least not as far as possible research and therapy goes: if there are things increasing autonomy without creating so many problems that the increased autonomy cannot be enjoyed they should go. The inherent question is of course a messy one but not ‘in principle’ messier here than in the majority of other non-prima facie obvious societal questions.

In this sense the analogy to the deaf community breaks down. It is possible for somebody to be thinking it through and then decide that she doesn’t want an implant. Like it is possible that the person with a pseudonym that looks like it has been obtained from an overdose of SpongeBob Squarepants decides in 47 not to have the procedure done that my wife absolutely wanted us to put our savings into.

Thanks for your post – as a parent of an autistic child, what you wrote resonated with me on many levels.
And it has been interesting reading the many comments, most of which I have to disagree with for the simple reason that a lack of meaningful experience with disability renders most of your opinions essentially trivial musings at best. I say this as a parent, as someone who works on a daily basis with people with autism and their families, and as a friend and colleague of people with autism and as a friend of parents with children with other disabilities. The experience of autism, or Down’s syndrome, or cerebral palsy, or myriad other neurological, developmental, intellectual or physical disabilities cannot be compared to wearing glasses, or being overweight, or difficulty doing math. And as Michael stated, disability is not the same as disease. A close friend today compared autism to cancer and diabetes. To compare my child, who she is and her experience of the world, to a life threatening and terminal disease, was one of the most offensive things a friend could say to me. This is what many parents feel when someone talks about a cure. Most importantly, this is what many people with autism and other disabilities feel when people talk to them about cure. It says to them that there is something fundamentally broken, an essential ‘wrongness’ about them, that must be fixed at all costs.
Lose weight, get laser eye surgery, whatever. Not the same thing.
And if you think that as a ‘potential parent’ you have a stake in this – well, maybe you do. It’s called being a part of the human race – guess what? Things happen. You have a baby. Sometimes, that baby may not be the perfect little walking talking genius you wanted them to be. Did you meet every single one of your parents expectations? Give me a break.

Thanks for that, Gareth.

Aulus Gellius wrote: so many people talking about this are intimately connected with disabled people that I think they sometimes assume a level of knowledge and familiarity with the issue that I, for one, don’t have.

Actually, it’s quite the opposite: unless I’m specifically speaking to people who I know have some familiarity with disability issues — and Michael Bérubé’s audience tends to qualify, because it’s something he writes about regularly — I pretty much assume total ignorance (but basic good will).

A.G. continues: What are some examples of what society would be doing, if everyone listened to and agreed with the social-model-of-disability people? Beyond wheelchair ramps, what are some of the accomodations to be made?

First and foremost, people would stop thinking of people with disabilities as, first and foremost, people with disabilities. Wheelchair ramps, for example, are a great benefit to delivery personnel as well as wheelchair users and others with less limited mobility. Properly tagged graphics in web interfaces are very helpful to browser and browser plug-in programmers (which means benefits to browser users) as well as to the visually impaired browser users who use screenreader software. Closed captioning is fantasticly useful in sports bars, etc., as well as for the aurally impaired.

In a way, we live in a charmed age: many disabilities can be mitigated with technology in a way that makes the social model much more viable than it was a quarter-century ago.

Aulus Gellius @ 38: As someone who’s interested in, but doesn’t know much about, disability, I think I have a complaint that’s sort of the opposite of lilwatchergirl’s @ 4 (now): so many people talking about this are intimately connected with disabled people that I think they sometimes assume a level of knowledge and familiarity with the issue that I, for one, don’t have.

Point taken. I keep thinking I’m repeating myself and repeating myself with posts like this, and I keep forgetting that, you know, other people may not have read every little thing I’ve said on the subject over the past X years. Gotta watch those throwaway Gadamer references, too.

Ahistoricality’s linked post provides a pretty good explanation of different models of disability, but the “social” one could use some more specificity. What are some examples of what society would be doing, if everyone listened to and agreed with the social-model-of-disability people?

Well, that’s the question, isn’t it. I mentioned support services, vans, job coaches, widened doors and bathroom stalls, closed captioning, Braille, guide animals and handicapped-parking spaces, but of course “job coaches” are a support for people with intellectual disabilities (breaking news on this front, which is why it’s on my mind: Jamie was hired to his first job yesterday, in a Penn State mailroom. P/T, 4 hrs/wk, as part of his high school “transition” program), and “support services” are appealingly vague. The problem — and I’ve just started to have this debate with people in DS — is whether the social model of disability, which was devised primarily by people with physical disabilities, affords the kind of accommodation (and the kind of social theory) we need to account for people with intellectual disabilities. On one hand, clearly yes: the very idea of “intellectual disability” is socially and historically variable, and there are many social contexts in which mild mental impairment is not really terribly “disabling.” On the other hand, clearly no: when it comes to more severe mental impairment, or mental illness, then there really isn’t such a thing as a “barrier-free social environment.” Instead, we might be talking about palliative measures (and I’m kind of amazed that anyone in this thread thinks I’m against these) ranging from assisted living arrangements to medical interventions.

Which brings me to the next thing.

many disabilities can be mitigated with technology in a way that makes the social model much more viable than it was a quarter-century ago.

I don’t see how technology makes the social model more viable.

Am I wrong to situate what you’re calling the social model in a theory of culture that goes back at least a hafl-century to folks like Goffman (e.g. Stigma and Presentation of Self)? Didn’t they make the point that biology isn’t itself meaningful, but rather that culture assignes meaning to things like disability and sickness and race and sexual orienation? That while American culture likes (!) to claim that the meaning is natural and inherent in the biology, that this claim is itself cultural? That what you have may be culturally defined as a sickness (e.g. homosexuality) or as a disability (e.g. dark skin) but that the biology really doesn’t determine the social constuction? It seems to follow that if biology doesn’t define the disability, that technology can’t mitigate the culturally constructed disqualifications to full personhood?

JoB @ 49: I have a real issue with your representation of Gadamer and Rawls. I think it is at the heart of the discussion.

Let’s take Rawls. Whatever the failings of his reasoning, the clue of his thought experiment isn’t that people take a stance in a disinterested way. As far as I can see he designed it to allow people to take a stance in multiple interested ways; with a view to different horizons if you will.

Well, not exactly. The problem with Rawls’ theory of justice, as we discussed in this ancient thread, is that when you start from the Original Position in which people know neither their status in life nor their own conceptions of the good, you wind up relegating the consideration of disability to the “legislative phase” of the thought-experiment. You also wind up with a reductive conception of the Difference Principle. As for Gadamer, I think you’re not quite fusing with his horizon: he’s not suggesting that any two experiences or languages or ways of life are necessarily incommensurable. But he is suggesting that it’s a mistake to think that “true knowledge” is what you have when you boil all the “interest” out of the process of understanding (or horizon-fusion, if you prefer).

Michael Schneider writes: It seems to follow that if biology doesn’t define the disability, that technology can’t mitigate the culturally constructed disqualifications to full personhood?

You’re right, more or less, about the intellectual origins of the social model (it sounds plausible, anyway; I haven’t actually done a genealogy of it), but I think you’ve got the issue of technology entirely backwards. If we can divorce the dominant construct (Americans aren’t really unique in this) from biology as destiny, then it fairly naturally defaults to ability (or rather, function) as the marker, and technology makes it harder to distinguish between “the disabled” and the “able-bodied/normal” in daily and professional function, if (yeah, lots of ifs) accomodations are made.

So basically we have animal imprinting:
“Sometimes, that baby may not be the perfect little walking talking genius you wanted them to be.”

Plus knee-jerk alienation:
“This is just crazy talk, hysteria. Everyone knows that “normal” means white, male, and Christian. Any deviance must be cured. The body politic must be kept pure. That’s why Tiger Woods must convert to Christianity. Accomodationist talk of ‘mitigation’ just echoes Munich 1938. Anyone who can’t see this probably needes a hysterectomy.”

Plus yards of philosophical folderol. Really the argument seems to reduce to:
1) A cure implies something is wrong
2) Saying something is wrong with my child threatens my child
3) I love my child
4) I do not like cures that threaten my child.

This is a perfectly understandable position. It’s not necessarily coherent or consistent, but its understandable.

It also seems like one of your issues with cure vs. accommodation is that when discussing a cure the focus is on changing the individual, while when discussing accommodation the focus is on changing the world to fit the individual. You seem to strongly favor the latter. Of course, you could be attacking the way talk of a (hypothetical) cure can be used to avoid providing needed accommodations right now. But that doesn’t explain why you find the concept of a cure for a disability problematic.

Your division of conditions into those that should be cured and those that shouldn’t seems arbitrary. Why shouldn’t congenital cognitive deficits be cured, if possible? We try to cure acquired cognitive deficits, such as those following stroke or traumatic brain injury.

Adam, can you be a little more condescending while still maintaining your embarrassing oversimplifications? Cause that would be a really neat trick.

Autism is not something that can be taken off at night like a pair of shoes, it is intrinsic to the human being, a way of experiencing the world, hence a ‘decent intervention program’ can provide a person with autism with tools to navigate the non-autistic world but is not a cure.

Well, the point of the “continuum” remark is that the behaviours that make up things on the autism spectrum can slide fairly seamlessly depending on intensity into many “normal” situations. If a child diagnosed as autistic is given therapy enough that years later they no longer have that diagnosis – I know such a child – what might we call that? A bad diagnosis? A mitigation? A cure? Obviously such stories are possible only for a small proportion of kids but it’s strange to read someone who is sure they have a definition of autism that, as pointed out above, is variable.

Michael Schneider writes: Haven’t we learned that fighting about the facts won’t impress those who are determined to believe? In other words, culture determines meaning, and meaning determines facts. Facts don’t determine anything.

That’s an absurd reductio, an ahistorical and reductionist view of the social model theory, not to mention theory in general. It has no bearing whatsoever on this discussion. Or any other meaningful discussion, as near as I can tell.

Autism is not the best example to use here. Not because of any science-based difference between autism and other disabilities, (since, clearly, science hasn’t gotten very far in even accurately describing autism, much less thinking of ways to mitigate it or the more troublesome features of it). But because at the extreme most of the time, and even at the middle some of the time, accomodations don’t result in a level of freedom/functioning that looks like a comfortable existence to many. In this respect, autism is quite different from most long-term disabilities. And I say this despite my long personal relationships with two people who have autism. One is high-functioning and contributes to his community as long as he’s dealing with people who know his story; one is medium-functioning and even with the best efforts of all of the people in her life, she is unable to be safe unless constantly supervised, and experiences a level of frustration in every day life that often looks overwhelming.

Michael Schneider writes: Forgive me if I indulge in hyperbole or state things without all the hedging and qualifiers.

No. I’ve been called humorless before on disability issues — on a few other ones, as well — and it’s probably close to true: this is a discussion of real people, real issues. You want to engage in theoretical tantrums, without caring who you disturb: that’s pathological.

Maybe, just maybe, when people ask Dr B “what do you have against cures, anyway?” it’s because there’s a powerful cultural narrative about cures and defects, normality, ideals, perfectability, and cosmetic surgery.

You might want to go back to the original post and read it, this time.

Or something like that, which I’m just not smart enough and widely read enough to pinpoint properly.

You said it, not me.

Mand01, I think that “recovery” in the context of autism means something along the lines of, that the person (or her/his family) has found a combination of accomodations — which could include mitigating treatment but might just as easily mean environmental changes and assistive technology — that create a level of comfort that seems adequate. Which still leaves an awful lot of people for whom that “magic combo” of accomodations has not been found. You’re right, this is partly a function of the wide range of involvement seen in people with autism, but I think it’s also a function of the essential nature of autism itself, and (often) the complicating factor of cognitive impairment and hypersensitivity to stimuli resulting in high levels of discomfort in many if not most environments.

So, Berube is against cures because they are science fictional, not science fact?

Thinking about Mand01’s comments, it strikes me that there’s a shared word contributing to the confusion- that “disability” can result from many things. “disability is not disease”- and yet, for some people, like my husband, it is. He has MS, and has mobility impairments because of it. He hates it; he would do almost anything for a cure. He knows how to appreciate what there is to appreciate in life, and so he is able to appreciate what it gives him- but mostly it just takes, and takes, and takes. And yet he and the fellow with no legs due to Thalidomide both are disabled and benefit from the same social and infrastructure accomodations. For my husband, disability is disease. It seems to me that the distinction would have more to do with when the disability began- before or during identity formation, or after identity is more settled- than whether the disability is caused by a virus, accident, genes, toxin, or is idiopathic.

But that’s just a musing. My point is that some disabilities are experienced as disease, though I recognize that they aren’t all.