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

by Michael Bérubé on January 14, 2010

A friend alerts me to this recent item in Lisa Belkin’s NYT “Motherlode” blog:

Should Down Syndrome Be Cured?

The guest post here on Friday—about the birth of Cash Van Rowe during a blizzard, and the jolting news that he had Down syndrome—led many of you to leave comments for his parents, assuring them that the road ahead was a journey they would cherish.

But what if Cash’s Down syndrome could be cured—or, more precisely, be mitigated?

News out of Stanford University late last year hinted that this might one day be possible. Researchers from its medical school and the Lucile Packard Children’s Hospital explored why children born with Down syndrome do not start life developmentally delayed but rather fall behind as they get older. By using mice that were genetically engineered to mimic Down syndrome, they found that neural memory deficits prevent such children from collecting learned experiences, and that they could improve memory and cognition by medically boosting norepinephrine signaling in the brain.

The study (which was published in the November issue of the journal Science Translational Medicine) and the accompanying announcement by Stanford hinted at an eventual cure. “If you intervene early enough, you will be able to help kids with Down syndrome to collect and modulate information,” said Ahmad Salehi, a neurologist and the primary author of the study. “Theoretically, that could lead to an improvement in cognitive functions in these kids.”

There are already drugs on the market that boost norepinephrine signaling. They are used to treat depression and A.D.H.D., and Salehi expressed the hope that his findings would soon lead to trials of such drugs on babies with Down syndrome.

Good news, right? Not necessarily. The announcement of a potential breakthrough (which, it should be noted, is still mostly theoretical and well in the future) has led to some soul-searching among parents of children with Down syndrome who wonder how much the presence of an extra chromosome makes their children who they are.

On the Web site Contrarian, Jenn Power, a Canadian mother of twin boys with Down syndrome (and the daughter-in-law of the Web site’s author), is described as greeting the news with tears. Explaining her reaction, she wrote:

As you know, I have many years of history supporting people with intellectual disabilities. Through my connections with these remarkable people, both personal and professional, I have become more and more convinced of the fundamental human dignity present in each person, the vital importance of diversity among the human race, and the particular and irreplaceable role that folks with intellectual disabilities play in creating a more humane, compassionate, and hospitable society. It is clear to me that, as a society, we need what people with intellectual disabilities have to offer.

Before we welcomed Josh and Jacob into our family, I might have had a much easier time responding to this particular piece of research. 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. I find it hard to read this article without hearing a judgment on the value of my children, children who have transformed my life and the lives of many others—for the better—with the help of an extra chromosome.

In the debate surrounding disability, there is an assumption that we all agree on a definition of what is good, what is better, what is the ideal. Who decided that smarter is better? Who decided that independence takes precedence over community? Who decided that both the individual and the society are better off without Down syndrome? I would assert that something important is lost as our genetic diversity diminishes.

I would also assert that people with disabilities may not themselves choose to be ‘cured.’ The bioethicist and disability activist Gregor Wolbring, who happens to have no legs as a result of the effects of thalidomide, asserts that, if given the choice, he would want to remain ‘disabled.’ He feels it gives him an evolutionary advantage, even as it allows him to weed out the ‘jerks’ who treat him differently as a result of his disability. He poses the compelling question: ‘What exactly is the problem? Is the problem that I have no legs, or is the problem that I live in a leg-dominated society?’ Similarly, what exactly is the problem with Down syndrome? Is the problem that my boys have a low I.Q., or that they live in an I.Q.-dominated society?

I believe that our lives are lived not only for ourselves but for others. My experience with people with intellectual disabilities is that their lives enrich the lives of others, and of the world around them, in significant and irreplaceable ways. I see this everyday in the school where my boys are in Grade Primary. I see how their presence brings out compassion, kindness, even tenderness, in the older kids at the school. How much money do we pour into anti-bullying strategies? Why do we not see the important ways that kids with disabilities help to reduce bullying in schools?

In the end, for me, this all comes back to people. Josh, Jacob, Mary, Cathy, Kate, Janet … these people have Down syndrome. These people are my family, my friends, my teachers. Without the benefit of that extra chromosome, they would not be who they are. Their intellectual ‘impairment’ gives them an insight and an emotional intelligence and maturity that I can only aspire to. They do not need a needle in their brain to make them more functional, to help them find their car keys. What they need is a society that values what they have to offer. I would like to think that I can be a part of creating that society.

The Powers asked Salehi for his thoughts, and he did not disagree. He wrote:

The goal of our research is not to change the personality of a person with Down syndrome but rather to help them lead more independent lives.

There are many aspects of people with Down syndrome that we should consider a blessing. Their positive interactions with others, their cheerfulness and affection, and their nonjudgmental attitude are just a few examples. The question whether all people with Down syndrome need some kind of treatment is entirely personal and completely depends on the individual situation. Nevertheless, not every child with Down syndrome is as lucky as Jenn’s children. There are many places in the world that may not look at Down syndrome the way that Jenn does. For these children, finding a way to even partially restore cognition or preventing further deterioration in their learning and memory would be extremely important and helpful in their very competitive societies.

On the one hand, parents of children with disabilities are emotionally well served to find a silver lining in that disability. It makes it easier to get through the day if you focus on what life has given TO your child, rather than what has been taken away. On the other hand, optimism is not merely denial. It is based on an intimate familiarity with a condition and a firsthand knowledge of what life looks like from inside the disability, looking out.

If there were a cure for your child that would fundamentally change who he is, would you welcome it?

And then come dozens of epic-fail comments, in which the overwhelming majority of Ms. Belkin’s readers insist that parents who are skeptical of “curing” Down syndrome are selfish, irresponsible, deluded, and even colonialist.  Colonialist!  That’s a new one.

Look, before we go any further here, let me start by saying that the title of my post is supposed to be every bit as provocative and misleading as the title of Ms. Belkin’s. I am not against cures for things. As I have pointed out many times in disability-studies debates, the discourse of the “cure” is most controversial with regard to Deaf culture, partly because of the long history of “oralism” (which involved more than a century of trying to stamp out sign language) and partly because there are myriad social contexts (you’re reading one now!) in which it is no disability at all to be deaf.  But even in the most cure-averse precincts of disability studies, there is no Polio Restoration Society, no Smallpox Appreciation League.  And hey, even though I am very, very, very skeptical that there could ever be a cure for Alzheimer’s, would I be happy if we discovered the magic Alzheimer’s-B-Gon mineral on the planet Pandora?  You betcha!  I would even be in favor of mining for it.  As I’ve tried to tell people over the years, Jamie has a phenomenal memory, and he collects learned experiences better than many nondisabled people I know.  I can’t really bear the thought of him living through the experience of having that wonderful faculty eroded gradually and inexorably, to his complete and utter confusion.

But there are two important points being elided totally ignored here.  The first is that we need to understand that disability cannot be collapsed into disease, and disease is not synonymous with disability.  Some diseases are disabling, yes; others are potentially disabling (diabetes, Graves, Hashimoto’s thyroiditis) but can be palliated with medication.  And most disabilities have no disease etiologies whatsoever.  Applying the cure/disease model to those disabilities is a category error, and fundamentally mucks up our thinking about how to accommodate disability in society as best we can.

When I’m in one of my black-humor moods, the kind into which I was plunged last night upon reading that comment thread, I tend to say, “the reason all the T-shirts say ‘RACE FOR THE CURE’ is that ‘RACE FOR THE REASONABLE ACCOMMODATION’ doesn’t fit neatly on one side of the shirt.”  By which I mean, of course, that the discourse of the cure is everywhere, and the discourse of reasonable accommodation, so far as I can see, is understood only by those people who already know something about disability, US disability law, ramps, kneeling buses, in-class paraprofessionals, and job coaches.  It’s almost like a kind of sign language, spoken only by those who are already disability-literate.

So yes, some things should be cured, and their cure would be an unambiguous species-wide good.  Tay-Sachs disease, for example.  Alzheimer’s.  Perhaps Parkinson’s and Huntington’s, too.  But Down syndrome and deafness aren’t anything like these.  So when I see people saying (and this is a comment recommended, at last count, by 60 readers!),

Are babies who are born with cleft palates fundamentally who they are so we should not use surgery to fix them? Are babies born with a genetic disorders such as celiac disease, Tay-Sachs or Sickle-cell be lft to suffer because to do anything would compromise “who they are?” This is ridiculous. If there’s something you can do to help your children get along better in the world you do it. Anything else is about you and is fundamentally selfish.

I have to say, are you seriously comparing Down syndrome to fatal conditions? Have you the faintest idea what in the world you’re talking about?  Sure, you should do things to help your children get along better in the world.  Janet and I do those things too.  That’s why we watch what Jamie eats, and try to make sure he stays active in swimming and basketball and tang soo do (and lately, 45-minute workouts at the gym with his father).  That’s why Janet downloads all kinds of music onto his iPod and talks to him about the differences between rock and folk and punk and soul and blues.  That’s why we buy him all the art books he asks for, from Leonardo to Edward Hopper.  That’s why we hire a tutor for an hour per week to help him with his second-year French homework, because even though he’s mastered the verb endings for the past participles of regular verbs in the passé composé (é for verbs ending in “er,” i for “ir” verbs, u for “re” verbs, and don’t tell me you didn’t know that already), he has trouble with the irregular verbs and more trouble understanding why “aller” takes être rather than avoir as its auxiliary.  And we do all this, believe it or not, without medical intervention.  We simply try to build on his strengths and compensate for his weaknesses (he still has no idea how to spend or keep track of money, which is either a disability or a qualification for an eight-figure bonus, depending on whether you have Down syndrome or a job on Wall Street).

The second thing is that the entire premise of the discussion here is wrong, wrong, wrong, and the wrongness starts in Ms. Belkin’s second paragraph.  Once again with feeling:

But what if Cash’s Down syndrome could be cured—or, more precisely, be mitigated?

Yeah, well, so much for that “more precisely.”  Because once the word “cure” appears—as it does, unfortunately, in Ms. Belkin’s concluding question to her readership—the game is up, and the brain shuts down.  Of course cures are good!  Only crazy selfish irresponsible people are against cures.

But as the great Allen Iverson once said, we’re talking about mitigation.  Not a cure, not a cure, not a cure, we’re talking about mitigation.  Mitigation.  Not a cure.  Not a cure.  I mean, how many times do I have to say it?  We’re talking about mitigation.  Not a cure.

Actually, it’s even more tenuous than that.  We’re talking about the potential for the mitigation of some aspects of Down syndrome.  Not a “cure.”

It isn’t until the 69th comment (recommended by only six readers!) that someone points this out.  Laura from Boston, you win the thread:

This really isn’t a question of curing Down Syndrome; it’s a question of mitigating certain aspects of Down Syndrome to make it easier for those with DS to live independent, healthy lives.

See, we’re talking about potential mitigation.  Not a cure!  And mitigation can take many forms—including reasonable accommodation!  That’s right, folks, when you make it easier for people with disabilities to get around in society, whether they have mobility impairments or intellectual disabilities, you are mitigating the effects of their disabilities.  And who could possibly be against that?  Clearly, the only people who oppose support services, vans, job coaches, widened doors and bathroom stalls, closed captioning, Braille, guide animals and handicapped-parking spaces are selfish, irresponsible, deluded, and even colonialist.  Let’s fix these broken people today!

And don’t forget to race for the reasonable accommodation while you’re at it.

(x-posted.)

{ 83 comments }

1

kid bitzer 01.14.10 at 2:57 pm

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.

2

Michael Bérubé 01.14.10 at 3:11 pm

Wait. Are we talking about mitigation?
Not a cure?

3

Bill Gardner 01.14.10 at 3:19 pm

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.

4

lilwatchergirl 01.14.10 at 3:30 pm

The disabled people’s movement, in conjunction with the academic field of disability studies, has been saying such things for a very long time.

Are non-disabled people listening?

For the most part, no.

Most people are willing to consider that our concepts of ‘race’ and gender are socially constructed. Say that about disability and you’ll be laughed out of the room. Yet, the social model of disability defines it as *separate* from impairment – and says that the oppression that constitutes disability is in far more need of addressing, on a social scale, than impairment.

This is an old concept in the field of disability – it’s been around since the 1960s. The mainstream of social policy, and indeed of sociology, continues to ignore it, for the most part. The question of ‘why’ probably has some complicated answers. One is the fact that many disabled people are still not being allowed a voice of our own. Even in this excellent blog post, the cited comments and quoted articles are by non-disabled people.

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). Try the Leeds Disability Archive – which is free and open to all readers – for examples of these sociologists’ work, among many others.

5

Jason B. 01.14.10 at 3:30 pm

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.

6

Rich Puchalsky 01.14.10 at 4:00 pm

Aren’t these people just a tad scientifically illiterate, as well as disability-illiterate? A cure for Down’s Syndrome would involve some kind of early-on, possibly prenatal genetic modification to do something about the extra chromosome throughout the body, something which is firmly in the realm of science fiction at present, and which appears likely to me to be science fiction through the rest of our lives.

“oppose support services, vans, job coaches, widened doors and bathroom stalls, closed captioning, Braille, guide animals and handicapped-parking spaces”

Isn’t there some significant controversy about Braille? Fewer people literate in it, more people using audio reading devices, its effectiveness as an accommodation therefore questioned, etc. Wiki:

http://en.wikipedia.org/wiki/Braille#Braille_Literacy_Statistics

7

Michael Bérubé 01.14.10 at 4:04 pm

Aren’t these people just a tad scientifically illiterate, as well as disability-illiterate?

Yes.

Isn’t there some significant controversy about Braille?

Also yes. But I was thinking about this guy, who desperately needs to be fixed. Perhaps when those FEMA camps are finally open for business.

8

Ahistoricality 01.14.10 at 4:15 pm

I suspect, though my predictive powers aren’t particuarly noteworthy, that the rise of the Baby Boom generation into very late adulthood (so to speak) will complicate our discussions of ability and disability over the next few years. As Bill Gardner notes, above, “some management and accommodation” will be necessary in almost everyone’s lives over time — “temporarily able-bodied” is the phrase I heard in the early 90s — and we might well, I hope, learn to treat ability and disability as a complex of spectra instead of a bunch of binary conditions. At the very least, as Michael Bérubé makes very clear in the post, we might learn to distinguish between medical and social aspects of disability and abandon some of the counterproductive charity/tragedy discourses.

9

mpowell 01.14.10 at 4:19 pm

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.

10

Michael Bérubé 01.14.10 at 4:47 pm

Thanks, Ahistoricality! Your linked post is wonderful, too.

mpowell: I really would like to know what your actual position is.

You know, at first I thought you were pulling a Kid Bitzer on me. Honestly, it’s not clear that my position is that we overemphasize the “cure” and use the concept in all kinds of situations where it’s not appropriate? Do I have to put up that Iverson link again?

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?

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. (I think here of Gadamer on “interest” being a precondition of understanding.) And on the basis of that understanding, as well as a modicum of scientific literacy, I’m saying that there’s a world of difference between Dr. Salehi saying that boosting norepinephrine signaling “theoretically … could lead to an improvement in cognitive functions in these kids” and a NYT writer taking that and leaping to “would you cure your child’s disability if you could?” Ms. Belkin’s column winds up eliding totally obliterating that difference, and the comments that follow are predictably uninformed about what kind of biochemical anomaly Down syndrome actually is (see Rich @ 4).

11

Michael Bérubé 01.14.10 at 5:05 pm

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.

12

mpowell 01.14.10 at 5:09 pm

Michael: I am not sure which Rich@4 you are referring to. I am not seeing such a comment either her or at the linked site. It sounds like your position here is more or less orthogonal to the debate being had at Belkin’s blog, which is probably why I was confused. The article certainly conflates the issues of cure versus mitigation, but the issue it appears to want to address is whether we should regard the news that this new mitigation technique is showing some promise as positive or not. Belkin makes a credible argument that some people have doubts. So you’re saying that confusing the difference between mitigation and cures undermines that discussion. Fine. I think it would be more interesting to hear you take on the view that it is reasonable to view this research as not a positive development.

13

kid bitzer 01.14.10 at 5:19 pm

“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.)

14

Castorp 01.14.10 at 5:46 pm

“Fine. I think it would be more interesting to hear you take on the view that it is reasonable to view this research as not a positive development.”

FWIW: I took the post to mean, discourse of “cure” wrong, bad, and distorting.

Additionally, and secondarily, I took the implication of Michael’s openness to “mitigation” to be that he and others with an interest could judge potential drugs, after they are a reality and not a theory, on a case-by-case basis.

15

Michael Bérubé 01.14.10 at 5:50 pm

mpowell @ what-is-now 12: exactly what Castorp @ what-is-now 14 said.

16

Mitchell Rowe 01.14.10 at 5:50 pm

Michael Bérubé :
So just to be clear, you are not opposing the research itself, or its use should the treatment prove effective, you are opposing the labeling of the treatment as a “cure” by the blogpost in question?

I have to agree with mpowell here. I was not completely sure what you were getting at.

17

lt 01.14.10 at 5:59 pm

@ #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.

18

praisegod barebones 01.14.10 at 6:08 pm

‘why should we take the advice of those people who are compromised, both emotionally and by their stake in the issue?’

Michael replied to this more gracefully than I could, but in case there are people hanging around CT who find references to Gadamer unilluminating, here’s a less allusive response:

‘because the fact that they have to deal with the practical implications of the disability being discussed on a day-to-day basis means that they probably have a better grasp of the issues than someone who’s just shooting from the hip in response to a blog post’.

Perhaps worth asking also: ‘why should we take the advice o0f those who *don’t* have a stake, either emotional or practical in the issue?’

19

Ceri B. 01.14.10 at 6:10 pm

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.

20

JW Mason (lemuel pitkin) 01.14.10 at 6:15 pm

you are not opposing the research itself, or its use should the treatment prove effective, you are opposing the labeling of the treatment as a “cure” by the blogpost in question?

Well, he also seems to be saying that (1) this kind of research, while potentially helpful, is a much less important part of the way we respond to Down syndrome than many people think, or than equivalent biomedical research is for many diseases; and (2) even if it turns out to be effective, this sort of intervention is not an alternative to social interventions (supportive housing, etc.) but part of them; or in other words we need to think not of fixing broken people, but of changing our society to allow the full development of everyone’s capabilities. (And that changing our thinking in this way is just as much a solution to the problems posed by Down Syndrome, as this drug would be.)

I thought this was fairly clear.

21

mpowell 01.14.10 at 6:27 pm

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.

22

mpowell 01.14.10 at 6:36 pm

I’d also like to add that I don’t think Michael’s perspective is compromised. That’s based on my reading of his previous posts related to this issue and his experience. But I just won’t agree that we should just do whatever people with experience with Down syndrome say we should do on an issue like this.

23

Omega Centauri 01.14.10 at 6:40 pm

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.

24

mollymooly 01.14.10 at 7:29 pm

Arnold Zwicky posted yesterday about the conflation of “illness/sickness/disease” with “disability”, and linked to NYT’s The Americanization of Mental Illness

25

Joshua W. Burton 01.14.10 at 7:48 pm

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.

26

Gareth Wilson 01.14.10 at 8:06 pm

So what do you think about cretinism? We not only medicate people to prevent it, we put the medicine in every saltshaker. Surely if we just let the amount of iodine in the diet vary, it would improve diversity among the human race and help create a more humane, compassionate and hospitable society.

27

mollymooly 01.14.10 at 8:17 pm

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

28

Substance McGravitas 01.14.10 at 8:47 pm

With or without scare quotes I don’t understand why someone would write that last thing in this context.

29

Michael H Schneider 01.14.10 at 9:17 pm

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.]

30

john in california 01.14.10 at 10:15 pm

I wear glasses, and have since I was 12. Without them I would never have seen the board, played football and baseball, drove a car, surfed (contacts) , seen a play or film clearly or just about anything else necessary for day-to-day modern living. Would I and all the people I would necessarily depend on be better people without the invention of glasses? Maybe. Or maybe my needs would just be ignored.
Do we not try to mainstream Downs children now in the hope/expectation that they will be able to live more independent lives? So why would anyone want to limit any therapy that gave them more control and autonomy. Are their parents going to love them less because the children need them less? Maybe, but maybe those parents will have more time for their other children or for community work around disability issues.
We all have limitations that we and those who care about us have to come to terms with. Rationalizing those limitations by positing offsetting virtues may be comforting for those who cannot change their circumstances, but to penalize a person now or in the future because it would make a someone now feel either less significant or cheated is cruel and stupid.

31

Mitchell Rowe 01.14.10 at 10:23 pm

29:
Well said.

32

snh 01.15.10 at 12:27 am

This same dynamic plays out in a similar form over international medical aid. Large NGOs and important scientific researchers emphasize ‘eradication’ — eradication of malaria, guinea worm, schistosomiasis, leprosy, etc. People are up for 10 years of intensive effort, with the effort getting more intensive as the disease gets rarer, until success is achieved and all funding can now end. In actual fact, the approach that we take with our own diseases is much more effective — access to basic public health/primary care services, which provide a mixture of prevention, cures, and symptom alleviation. No one ever yaps about eliminating whooping cough, we just vaccinate our kids and treat anyone who gets it with supportive care. Same with giardia, Lyme disease, etc. But in the international context, it’s all eradication — right now polio is the big debate, a disease that’s easy to control with basic public health measures. Funding public health is boring.

33

Alex 01.15.10 at 12:40 am

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.

34

John Quiggin 01.15.10 at 2:15 am

Maybe it would be helpful to step away from the medical/disability context. We are who we are, in large measure, because of our life experiences, good and bad. So, if we are reasonably happy with who we are now, we would presumably not want (if it were possible) to undo the life experiences that made us that way. In particular, it is sometimes but not always the case that we see bad experiences as having made us better people. For this reason we should not strive too hard to avoid all bad experiences. On the other hand, some kinds of bad experience make us bitter or fearful people and these seem unambiguously bad.

But what about the case where a bad experience makes us who we are, but not in a way that can be said to be either better or worse? As I said, we presumably would not wish to undo such experiences if we could, but we would want to prevent them from happening in the first place.

35

JW Mason (lemuel pitkin) 01.15.10 at 2:39 am

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?

36

JW Mason (lemuel pitkin) 01.15.10 at 2:40 am

(Sorry, by John I mean john in ca, not John Q.)

37

Michael Bérubé 01.15.10 at 3:15 am

OK, finally back from a full day of doing stuff on campus, and first I want to say thanks to praisegod barebones @ 18 for unpacking my breezy allusion to Gadamer:

Michael replied to this more gracefully than I could, but in case there are people hanging around CT who find references to Gadamer unilluminating, here’s a less allusive response:

‘because the fact that they have to deal with the practical implications of the disability being discussed on a day-to-day basis means that they probably have a better grasp of the issues than someone who’s just shooting from the hip in response to a blog post’.

Perhaps worth asking also: ‘why should we take the advice of those who don’t have a stake, either emotional or practical in the issue?’

Yep, that’s just about it. So to Ceri B. @ 19:

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.

Crossing the streams is perfectly safe, as every hermeneutic critic knows. Otherwise you can’t have a fusion of horizons! But Gadamer is less concerned with Descartes, iirc, than with Kant and the Enlightenment-in-general. (The fear that “interest” might corrupt “knowledge” is one of the central obsessions of this train of thought, and has its counterpart in the fear that “factions” might corrupt “politics.” Because, you know, they have interests.) Sorry to be so cryptic on this sometimes-philosophically-minded blog, but I was simply trying to rephrase something I wrote in Life As We Know It, and it went like this:

If Rawls is right in criticizing utilitarianism for its inability “to take seriously the plurality and distinctness of individuals,” then we shouldn’t begin to imagine, even provisionally, a system of justice that gets deliberated by “unmarked” individuals who have been theoretically purged of all individual proclivities and predilections. There isn’t a chance in the world that James Lyon Bérubé could come to the table independently of “interests,” independent of cognitive and social idiosyncrasies legible to all, independent of either a genetic makeup or a social apparatus that constructs him as “abnormal.” The society that fosters Jamie’s independence must start from an understanding of his dependencies, and any viable conception of justice has to take the concrete bodies and “private,” idiosyncratic interests of individuals like Jamie into account, or it will be of no account at all.

Back in the day, I thought of this as a kind of Gadamerian criticism of Rawls run through the prism of disability. And that’s what I was shooting for here. Which is to say, this time in two-part harmony with feeling, why should we take the advice of those who don’t have a stake, either emotional or practical, in the issue?

38

Aulus Gellius 01.15.10 at 3:23 am

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. In particular: 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? Beyond wheelchair ramps, what are some of the accomodations to be made? Maybe I’m the only one, but I have some trouble imagining the changes that people who know more about the subject keep referring to generally.

39

David Hobby 01.15.10 at 3:37 am

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.

40

Alex 01.15.10 at 4:13 am

One might think some actual knowledge would be helpful in answering this, but John, Mitchell and Alex apparently disagree.

Where have I said that we don’t need any knowledge to answer this?

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

Well whether Down’s syndrome is like “bad-eyesight-plus surfing” or not can be found out through a process known as science….

41

David Hobby 01.15.10 at 5:05 am

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.

42

Consumatopia 01.15.10 at 5:15 am

Is the point of this post that if the general public abandoned “cure” discourse, the parents of the disabled would be able to see past their paranoia and do the right thing by supporting research into this potential mitigation technology? Like thread-winner Laura said if quoted in full:

This really isn’t a question of curing Down Syndrome; it’s a question of mitigating certain aspects of Down Syndrome to make it easier for those with DS to live independent, healthy lives. When framed that way, it seems less controversial to me. Forty or fifty years ago, children with DS were not even sent to school because they were believed to be uneducable. Obviously, our perception of the condition changed; why can’t it change again?

I buy that Down’s Syndrome and deafness are not disease, but there’s no way I can see “neural memory deficits that prevent children from collecting learned experiences” as anything but a species-wide–Universe-wide–bad.

43

yoyo 01.15.10 at 6:00 am

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.

44

Liz Ditz 01.15.10 at 6:39 am

Thank you for this wonderful essay. But.

Ooops. You wrote

But even in the most cure-averse precincts of disability studies, there is no Polio Restoration Society, no Smallpox Appreciation League.

Maybe not in disability studies, but in the “autism = vaccine injury” and the larger, anti-vaccination..uhm, community — well, there is. No one name has stuck. I went with the Society for the Promotion of Vaccine-Preventable Illness, but “infectious disease promotion movement” (IDPM) has surfaced recently.

Another face of the autism wing of the IDPM is that autism can be cured, should be cured, should be fought, should be defeated…all violent and/or war-like language. And the members of that camp, such as JB Handley, are capable of vicious attacks against those who champion science.

The wing of the autism community that advocates acceptance and accommodation is often referred to by “neurodiversity”.

There are, well, verbally-violent conflicts between those who claim that there is a cure for autism, and those who don’t.

And Paul Offit, M.D., who is perhaps the most visible of the vaccines-do-not-cause-autism public figures, has received death threats.

45

Martin Wisse 01.15.10 at 9:24 am

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.

46

yeem 01.15.10 at 9:24 am

there is some evidence that alzheimer’s is more like a type of diabetes and thus amenable to treatment with a high-fat, cholesterol-packed diet. there is some anecdotal evidence of cholesterol consumption alleviating alzheimer’s symptoms since the brain really needs cholesterol to function well.

as for down’s syndrome, i slightly agree with the mother questioning the IQ-fixation. we can’t all have 150 IQs and trying to pretend we could get there with any procedure, pill or drug is really crippling our ability to better manage overall health issues in addition to specifics of syndromes and disabilities.

47

Martin Wisse 01.15.10 at 9:37 am

(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…

48

Praisegod Barebones 01.15.10 at 9:56 am

‘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?’

1.)Well, maybe I’m out of the mainstream here, but I live somewhere where laser-based eye-surgery to correct short sight is available fairly cheaply. I don’t feel the slightest inclination to go in for it.

2. ) This – what I’m about to say, not what I’ve just said – has almost certainly been discussed to death elsewhere, but it strikes me – as a somewhat ill-informed outsider, who has some sympathy with what Michael is saying, but also a certain amount of discomfort with a recent wave of status updates on Facebook, declaring that ‘autism is not a disease,’ a discomfort which I’m finding it hard to articulate – that reflecting on why, in the world as it is, it would be insane for anyone to class short sight as a disability, might give some insight into why it makes sense to regard disability as socially constructed (and also why ‘socially constructed’ is not at all the same thing as ‘arbitrary’) . Mind you, as Daniel Davies pointed out a while back, so does thinking about daleks.

3.) Michael, I don’t want to be ungracious about what you said about my earlier comment. That said, I suspect that I’m as intermittently philosophical as anyone here (with the possible exception of Brian W.), and I’m willing to send you my CV and publication list to prove it. And, with my philosopher’s hat on I found what you said about Rawls stimulating.

But I can also understand, even if I don’t share, the reaction that says : ‘Wait – I’ve got to read Gadamer before I can understand what you’re saying here? Give me a break!’ I mean, ‘Truth and Method’ is 600 pages long.

4.) Having thought about things more since last night, I very much agree with mpowell that ‘everyone ought to have a part in the discussion’. Including, as it happens, even those parents of children with DS, who are unlike Michael in being ‘emotionally compromised’ in their reactions to it. What I suspect is that the class of people who aren’t in some sense ‘emotionally compromised’ in their response to this is very small.
Think you’re one of them? Well, try taking the time to imagine how you would react to learning, say, that a child of your, or of a close friend was or would become cognitively disabled. You don’t feel the slightest frisson?

Because if you do, I’d suggest that you’ve got some emotional investments here – maybe ones that you find it easy not to acknowledge. And if you don’t? Well, I’m willing to hear your voice. But I guess that I’m not the only person who’d be skeptical that you’d have anything worthwhile or insightful to bring to the discussion.

5. Also directed at mpowell

‘I just won’t agree that we should just do whatever people with experience with Down syndrome say we should do on an issue like this.’

Well, that might be hard, since I wouldn’t be surprised if lots of them said different, incompatible, and occasionally incomprehensible things. But no-one was asking you (or at least, I wasn’t) to do that: they were asking you to be prepared to take advice from such people.

But perhaps part of the problem here just is the assumption that ‘people with experience of Down syndrome’ would say just one thing. Why would you think that?

6. OK, that’s enough. I have papers to grade.

49

JoB 01.15.10 at 10:51 am

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.

50

Gareth Rees 01.15.10 at 12:59 pm

person with a pseudonym that looks like it has been obtained from an overdose of SpongeBob Squarepants Fifth Monarchism

Fixed that for you.

51

Mand01 01.15.10 at 1:10 pm

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.

52

Salient 01.15.10 at 1:19 pm

Crossing the streams is perfectly safe, as every hermeneutic critic knows.

It’s when a streamstress crosses the threads that we get in real trouble.

53

Praisegod Barebones 01.15.10 at 1:22 pm

Thanks for that, Gareth.

54

JoB 01.15.10 at 4:52 pm

No thanks for that, Gareth.

55

Ahistoricality 01.15.10 at 4:59 pm

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.

56

politicalfootball 01.15.10 at 5:38 pm

Which is to say, this time in two-part harmony with feeling, why should we take the advice of those who don’t have a stake, either emotional or practical, in the issue?

Your choice – in the original post, I mean – to ponder the question in this framework has led to a lot of confusion. Jenn Power is a primary offender in the failure to distinguish between cures and mitigation, but you’re unable to say that (and perhaps unable to recognize it.) You treat her (with good reason) as an authoritative speaker, but this makes you unable to acknowledge that her authoritative position on this issue conflicts with your own position.

57

Michael Bérubé 01.15.10 at 5:57 pm

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.

58

Michael Bérubé 01.15.10 at 5:59 pm

Consumatopia @ 42: let me put it this way — the way a commenter (Patrick) put it over at my blog (in comment 12, on a blog where the comment numbers are nice and stable):

Think how different the whole discussion would have been if the potential intervention had been put forward in the following way, “We might be able to accommodate this disability better if we could support and enhance certain features of cognitive function in persons who have Downs Syndrome. Of course we don’t know what the side effects will be, so we can’t say for sure if the cost (considered whole, including the autonomy and personhood of the person with Downs Syndrome) will exceed the benefits to the people with syndrome.”

That does justice to Laura’s full comment, I think, and I hope to your question as well. Which leads me to the next thing.

59

Michael H Schneider 01.15.10 at 6:05 pm

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?

60

Michael Bérubé 01.15.10 at 6:09 pm

Liz Ditz @ 44: OMG, yes, of course you’re right. And though this is a minefield, let me take a few steps. One, the day the “vaccines cause autism” wing disappears from debate will be a Good Day, universal, species-wide. There’s so much woo out there (Arianna, I’m lookin’ at your place) I just don’t even know where to begin. Indeed, the surfeit of woo is one of the reasons parents of kids like Jamie are skeptical when we’re told of the Miracle Cure Mitigation that can boost IQ by 8 percent. We’re not paranoid; we’ve just seen a lot of snake oil pitches in our time.

Likewise, the “Race for the Cure” / “Whip Autism Now” wing seems to me to be precisely the kind of thing I’m criticizing in this post. But the idea of “neurodiversity” strikes me as being very close to exactly right. How can we best understand and accommodate people on the autism spectrum? And since we’re really not entirely sure what the hell autism is in the first place (let alone whether there is a “marker” for it — see Morton Ann Gernsbacher on this), how can we best understand neurodiversity even more generally?

If I knew I would tell you, right here in this comment box.

Which brings me to the next thing.

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Michael Bérubé 01.15.10 at 6:21 pm

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).

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Substance McGravitas 01.15.10 at 6:26 pm

How can we best understand and accommodate people on the autism spectrum? And since we’re really not entirely sure what the hell autism is in the first place (let alone whether there is a “marker” for it—see Morton Ann Gernsbacher on this), how can we best understand neurodiversity even more generally?

Autism strikes me as terrific for examples of a mitigation continuum that may include cure. Is a kid with a decent intervention program “cured” if that kid has managed to cut down on X behaviour but still needs a break to run sand through his fingers once in a while?

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Ahistoricality 01.15.10 at 9:01 pm

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.

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Mand01 01.15.10 at 11:18 pm

Substance McGravitas writes:
“Autism strikes me as terrific for examples of a mitigation continuum that may include cure. Is a kid with a decent intervention program “cured” if that kid has managed to cut down on X behaviour but still needs a break to run sand through his fingers once in a while?”

This is a flawed understanding of Autism Spectrum Disorders. 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. The child with autism taking a break to run sand through his fingers is doing so not because his behaviours have been ‘mitigated’ to the point of ‘cure’, but because he has reached a point of sensory overload or other stress and he needs to ‘stim’ to relax. Some kids with autism can hold it together in a stressful situation and take a break to stim their stress out, but find it overall very stressful to do so. This does not mean they are not autistic. Just that they have developed coping mechanisms to function in neurotypical world.

This is where I find the word or concept of ‘mitigation’ to be problematic. Suddenly we have a ‘mitigation continuum’ that leads to ‘cure’. I am all for providing tools/therapy etc to ensure that my child and others with disabilities have the ability/capacity to succeed in and navigate a world that does not accommodate them. I’m not sure if ‘mitigation’ is a word I feel comfortable using to describe that.

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Adam 01.15.10 at 11:59 pm

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.

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Michael H Schneider 01.16.10 at 12:09 am

technology makes it harder to distinguish between “the disabled” and the “able-bodied/normal” in daily and professional function,

But haven’t we learned from the gender studies folks and the race stuff and even the queer theorists that ‘actually being able to distinguish’ on any empirical basis doesn’t mean a thing? As long as we believe that black folks are good football players but just aren’t any good at management, and women are too emotionally unstable to rise to the top in business and politics, etc., pointing to evidence is a waste of time? 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.

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John Protevi 01.16.10 at 2:37 am

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

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Mand01 01.16.10 at 3:49 am

I am unsure in what way that is animal imprinting. The fact is, when you choose to have a child, you take with that choice certain possibilities. One of those possibilities is that your child will not necessarily be the person that you intended them to be. That is a basic fact of human existence. We all make assumptions/have expectations about our children and the person they are going to become. When they are diagnosed with a disability, those expectations are fundamentally altered. For some people, the grieving process is centrally about changed expectations about who their child will become. For others, it is often about the fact that the person they thought their child is, suddenly has a label.

But all parents must in some way come to grips with the fact that their child is not who they expected them to be. And when you become a parent, you take the chance, every single one of us, that all may not be as you thought it would be. When that happens, in the form of a disability, you don’t need to romanticise it, or expect the whole world to adapt to fit your child. That is not what ‘mitigation’, or acceptance, is about. And this is why I find it very frustrating to have this conversation with people over and over again. So if I have sounded frustrated with the comments on this post, it is because this is a constant conversation that as parents of children with disabilities, we seem to need to keep having with people without this experience.

Acceptance of disability means recognizing that on a most basic level, your child (and I am speaking as a parent, but it is not necessarily a parental experience – grandparents, personal friends, and the person with the disability themselves all go through this) as a person is not any more or any less the person that they are because they are autistic, or have Downs syndrome, or cerebral palsy. In the case of someone who is autistic, their experience of the world as an autistic person brings with it both strengths and challenges. But is is not in and of itself a broken or wrong experience. It is an experience. Coming from a neurotypical standpoint, in which your entire world is geared towards neurot thinking and experience, it may seem wrong or broken to you.

I don’t know how to explain it to you in any other way that might make sense to you. Except maybe this – our western anglo world is predominantly caucasian in the way it views the world. This means that to be a person of colour in this world can be fraught with difficulties. Does this mean we should cure a person of colour of their colour? Or should we focus on creating a society in which racial diversity is accepted and embraced? I believe that we should, and I hope that my child can grow up in a society in which her difference is similarly accepted.

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Substance McGravitas 01.16.10 at 4:04 am

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.

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Substance McGravitas 01.16.10 at 4:07 am

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.

That’s a terrible sentence so just ignore it.

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Ahistoricality 01.16.10 at 4:40 am

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.

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JoB 01.16.10 at 10:58 am

Michael@61, I think I got Gadamer right or better: I think you got me wrong in getting Gadamar (whether right or wrong). And I can follow your point on Rawls – the thought experiment is telling but deficient as far as building a conclusive argument.

But putting that aside; I do think that our stance in this matter (and others) needs to be one in which we try to empathize – as best we can, i.e. including the interest – with other beings(& in this specific case the most important one is that of the person with Down).

I do not see the asymetry as far as deciding (although for sure there is asymetry in who can provide relevant information and such information needs to be given by interested parties) whether a certain therapy is or is not something that needs to be supported.

On the individual case of an individual child it’s obviously different but only because it is generically so that in the case of individual children it is the parents’ choice that is to prevail (unless …). There is an interesting discussion there by the way given the choice for non-therapy in certain occasions being generally refused and enforced.

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Michael Bérubé 01.16.10 at 3:42 pm

Adam @ 65: But that doesn’t explain why you find the concept of a cure for a disability problematic.

See, one of the problems with the discourse of the “cure” is that even when I say I am not against cures for things, which I really did say at the very outset of my response to Belkin’s post, people who are all about the “cure” ask me, “what do you have against cures, anyway?”

To make matters worse, these people often proceed to ask, “look, if we can cure X, why shouldn’t we cure Y?” — even if X is caused by a simple bacterial infection and Y is something diffuse and nebulous like autism, with a dizzying array of “expressions.” It’s weird.

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.

No, my sense of which conditions should be cured and which shouldn’t depends on (a) the actual conditions themselves, and whether they are amenable to treatment or whether their “cure” would involve the kind of magic science-fiction ponies Rich Puchalsky has in mind @ 6, and (b) whether people collectively determine that the eradication of a condition is an unambiguous species-wide good. That’s not arbitrary; it simply involves reasoning and debating. But if you’re coming to the debate with the proposition that we have therapies for traumatic brain injury and therefore we should try to “cure” the myriad biochemical effects (not all of which are cognitive, though it’s telling that people obsess about this above all) of having an extra 21st chromosome in every cell, then I have to reply that you’re just not yet up to speed on what kind of disability we’re talking about when we’re talking about Down syndrome.

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Michael H Schneider 01.16.10 at 8:20 pm

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.

Ooh. Clearly disability, unlike illness, can’t be a metaphor. As with being female, there’s no disability mystique. It’s just a physical attribute, without any social stigma. And a good cigar is always just a good cigar. Forgive me if I indulge in hyperbole or state things without all the hedging and qualifiers. 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. Or something like that, which I’m just not smart enough and widely read enough to pinpoint properly.

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JB 01.16.10 at 8:33 pm

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.

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Mand01 01.16.10 at 9:50 pm

JB – what you say about accommodating autism is true, it is difficult because of the very wide range of abilities/disabilities along the spectrum. I tend to say that autistic people experience the world through ‘autistic eyes’ (of course this is also true for other disabilities) – and our world is very often a frustrating, difficult and confusing place when viewed with those eyes, or experienced through the lens of autism. But that doesn’t mean that a cure is the answer, or even a possibility. Another person talked of an autistic person they know who has been ‘recovered’, another common discourse in the autistic community (‘recovery’ as opposed to ‘cure’). Many so-called ‘recovered’ autistics I have seen feted on TV still present as autistic to me, in that I can see that they are still clearly autistic – I am not sure on what basis they are deemed to be ‘recovered.’ I am unsure if this ‘recovery’ discourse exists among other disability groups (maybe physical disabilities?).

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Ahistoricality 01.16.10 at 9:54 pm

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.

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Michael H Schneider 01.16.10 at 11:42 pm

… that’s pathological.

Pathology – that’s the disease model, rght?

Feeble humor aside, I hope you’re right and I’m wrong; I hope that technology can remove the social disabilities that are mapped onto physical disabilities. I wish you well in your endeavor.

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JB 01.18.10 at 8:15 pm

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.

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yeem 01.19.10 at 2:23 am

autism is heavily influenced by diet and environment, where down’s syndrome is less so. you can actually eliminate certain foods (wheat, for one) for autistic spectrum kids, or give them certain nutrients in higher amounts (such as omega-3), and see reduction of symptoms and increase in ability to co-function with, uh, neurotypicals. in fact, down’s syndrome is a bit of an outlier in spectrum disorders, because its effects do not tend to have the same relationships to diet and environment that other spectrum disorders increasingly seem to.

in fact, discussion about ‘cures’ leaves no room for this sort of interrelationship between diet, environment, and presumed-negative human variances resulting partly or fully from those factors.

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yoyo 01.19.10 at 5:30 pm

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

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Michael Bérubé 01.19.10 at 5:34 pm

That’s about it, yes. As I explained over at my place, I am also opposed to re-setting broken bones.

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gontumono 01.21.10 at 5:56 am

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.

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