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

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 detailed many times in this venue, 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 or controlled 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, 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 -er verbs, i for -ir verbs, u for -re verbs, and don’t tell me you didn’t know that), 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.)

Posted by on 01/14 at 08:10 AM
  1. So yes, some things should be cured, and their cure would be an unambiguous species-wide good.  Tay-Sachs disease, for example. 

    Antisemite! [/snark]

    Seriously, Michael, this is an excellent post that I hope gets wide play among the blogonets. Despite your evident (and fair) frustration at Belkin’s commenters, I like to think that some of them might be swayed by this post if they read it.

    Posted by Ben Alpers  on  01/14  at  10:58 AM
  2. Thank you so much, Michael (from a longtime lurker!). This is extraordinarily helpful for parents of still-young kids with DS like me. Race for the reasonable accommodation — I won’t soon forget that!

    Posted by Sara  on  01/14  at  11:28 AM
  3. Glad to help, Sara, and best wishes for your child!  And Ben, yes, I know you were kidding even without the snark tag, but just for everyone who’s not in on the joke:  Tay-Sachs is especially prevalent in Ashkenazi Jews.  As Rayna Rapp explains in Testing Women, Testing the Fetus, “the Chevra Dor Yesurim Program ("Organization for the Generations") was initially developed by an Orthodox rabbi living in Brooklyn who had lost three children to Tay-Sachs disease.  In his community, arranged marriages were the norm; stigmatized births and childhood deaths implicated linked genealogies, making marriage arrangements very problematic.  The idea of voluntary testing developed so that couples deemed incompatible could be prevented from dating....  Modern biomedical genetic technology here undergirds and enhances a traditional patriarchal practice” (158).  It’s often Exhibit A in my catalog of How Disability Disarranges the Usual Political Alignments.

    Posted by Michael  on  01/14  at  12:00 PM
  4. You already know that you’re my hero, right? So I don’t have to go all Bette Midler on you?

    Seriously,though, thanks again for cutting through the crap and delivering clarity.

    Plus I’m jealous that Jamie is interested in Janet’s music know-how. Russel’s iPod is filled with Nickelback, Backstreet Boys, and other crap, and when I try to broaden that range he sighs with disgust. A reaction to CBC’s Tonic: Mom. Jazz? Why?

    Posted by  on  01/14  at  12:01 PM
  5. I’m reading a social context? Cool.

    You’ve prompted me to have a new vision* of the future of Pandora as tourist trap:

    Visit Beautiful Pandora! Accommodation for Reasonable Races. I ♥ Pandora!

    ... oh yeah, and good post on the content too, not that that always matters so much in this social context.

    *My original sequel thoughts were that of course homo sapiens comes back with bigger guns, but then Pandora’s planet gets involved. Avatar II: Now It’s Getting Serious.**

    **I read somewhere that in this social context short comments that stick to a single point work best. That can’t be right, can it?

    Posted by  on  01/14  at  12:31 PM
  6. For some reason, I heard the last couple of paragraphs as if they were being spoken by Jim Mora, with the word “cure” replacing “playoffs”.

    Thanks for reminding us that it’s called Down Syndrome, and not Extra 21 Disease, for a reason. 

    And if being skeptical of curing Down Syndrome makes one a “colonialist”, then call me King Leopold II.

    Posted by Gary Oxford  on  01/14  at  01:07 PM
  7. Leopold II @ 6:  done.

    JP @ 5:  I’m reading a social context?

    Relax!  You’re soaking in it.

    Clare @ 4:  Plus I’m jealous that Jamie is interested in Janet’s music know-how. Russel’s iPod is filled with Nickelback, Backstreet Boys, and other crap, and when I try to broaden that range he sighs with disgust.

    Ulp, you should be jealous.  Nickelback? Really?  My heart goes out to you.  Jamie’s as susceptible as anyone to the Latest Thing—he’s all over that Jay Sean/ L’il Wayne song and Lady Gaga’s “Poker Face”—but it helps to have an indie-rock older brother who introduced him to the Walkmen, Modest Mouse, Franz Ferdinand, etc.  Musical update from just last night:  we were heading to the gym when Led Zep’s “Rock and Roll” came on Ye Olde Sirius XM Radio.  Since Jamie got a “Houses of the Holy” T-shirt for Molochmas, I told him he had to listen to this—imho, their best four minutes evah.  “You’re gonna wear that shirt, you have to know this song,” I said, sagely.  He duly appreciated this important part of our headbanging heritage, but then really lit up when it was followed by “Bluebird.” “Crosby Stills and Nash?” I said, unable to place it in the first ten seconds.  “No, Buffalo Springfield,” he said, totally without the help of drugs that boost norepinephrine signaling.

    I think I’ll publish a study that suggests that exposing kids with Down syndrome to a wide spectrum of popular music can enhance their cognitive functioning.  And soon they will discover the Cure!

    Posted by Michael  on  01/14  at  01:34 PM
  8. Recommended reading : ‘Flowers for Algernon’ by Daniel Keyes, which covers much of this territory in a short piece of fiction.

    Posted by Eunoia  on  01/14  at  01:47 PM
  9. imho, their best four minutes evah

    As a huge Jimmy Page, John Paul Jones and John Bonham fan, but much less so of Robert Plant, I cannot agree with you.  “Rock and Roll” is fine, but doesn’t include nearly a long enough stretch where Robert isn’t singing about sex or hobbits or sex with hobbits.  My 5 favorite 4+ Zeppelin minutes, off the top of my head, might include:

    1) “Over the Hills and Far Away”, particularly the part before Robert starts his higher octave squealing and then the double-stop ascending climax of the guitar solo
    2) The mellotron orchestral interlude and guitar coda of “The Rain Song”
    3) “Ten Years Gone”, all of it.
    4) “Houses of the Holy, especially the last 1.5 minutes with Robert shuts up and the three J’s keep chugging along.
    5. “Bron-yr-aur Stomp” all of it.

    /threadjack

    Posted by Gary Oxford  on  01/14  at  01:50 PM
  10. I think I’ll publish a study that suggests that exposing kids with Down syndrome to a wide spectrum of popular music can enhance their cognitive functioning.  And soon they will discover the Cure!.
    Ouch. I think you just gave me a hernia.

    (more srsly: thx for this post)

    Posted by  on  01/14  at  02:00 PM
  11. Only tangentially related: I recently saw a TV commercial for a group of (I suspect) frauds offering help for those with addiction problems. They proudly offer that a) they don’t “believe in disease concept” and b) “we know you can be cured.”

    How anyone could be “cured” of addiction’s non-disease was, sadly, left undiscussed.

    Posted by Evil Bender  on  01/14  at  02:13 PM
  12. The money quote is this one, “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.”

    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.”

    Try fitting that in a headline.

    Posted by  on  01/14  at  02:21 PM
  13. I couldn’t help but chuckle a little bit about the idea of “curing” Down Syndrome.  For reasons I can’t explain, the first thing that came to my mind was lasik eye surgery, a surgery that for many years has claimed to alleviate individuals from certain visual impairments and bring their vision back to a perfect 20/20.  What strikes me about the results of this type of surgery is that sometimes the results are favorable and yet in other cases the surgery was deeply unsatisfactory for the patient.  There was recently an article on NPR about the statistically growing number of people who feel that they now suffer more eye-related problems (dry eye, etc.) after having undergone the lasik procedure than they had with their previously unaltered set of eyes. If we can’t burn out the back of people’s retina’s correctly to give them ‘perfect’ vision, how would anyone “cure” Down Syndrome without the potential of strange side effects and compulsions that may lead the individuals to start claiming that they can see Russia from their house?

    Posted by  on  01/14  at  03:10 PM
  14. I have to say, are you seriously comparing Down syndrome to fatal conditions?

    As I learned from reading this book, which I highly recommend, Down syndrome actually was pretty much a fatal condition within living memory, due almost solely to this society’s mitigative methods. Of course at that point society was mitigating for the convenience of others rather than the quality of life of people with Down syndrome and those who cared about them.

    Posted by Chris Clarke  on  01/14  at  04:05 PM
  15. Let’s fix these broken people today!

    I, for one, did not see this coming at all. This thought is going to linger with me for a while, it is worthy of more and further attention. I wonder how a “cure” spokesperson will react when someone sincerely offers to help them fix what is obviously broken inside.

    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.

    Personal, anecdotal experience suggests “perhaps” curing Parkinson’s should be promoted to the unambiguous species-wide Good category. After watching a loved one’s twenty year struggle with this disease the *only* *remotely* positive side effect takeaway I can find is that I didn’t know it was possible for someone to retain their dignity in the face of so much pain.

    Posted by  on  01/14  at  04:12 PM
  16. Thanks for not only a great post but also for linking to that Iverson video.

    Posted by  on  01/14  at  04:29 PM
  17. Thanks, Michael, for this great post. As soon as I read the money quote I said “mitigation” is not a “more precise” term for “cure” and I bet Michael is going to point that out! So I’m glad I’ve learned something from reading you over the years!

    Pat Robertson, on the other hand—now that’s a condition that needs a cure. Cause I’m about ready to make a pact with the devil involving ole Pat, and if it all works out according to plan (and what could go wrong?), he’ll have reason to reconsider his recent statements.

    Posted by John Protevi  on  01/14  at  07:40 PM
  18. Just to be a groupie, thank you for the post. The NYT commenters were sending my blood pressure through the roof, but then I learned Pandora has a cure for Alzheimer’s so all is well. Maybe under the tree of souls will be a cure for Parkinson’s.

    Anyway, I’ve a close family member with a cluster of learning disabilities (cause unidentified, results clear), and nothing has bugged me more over the years than the question, “Don’t you wish he could be cured?” My usual response, “He ain’t sick. You though are.”

    Posted by  on  01/14  at  10:45 PM
  19. I am holding out for the Race for the Cure, the one to raise money to get Robert Smith a kickass clarifying shampoo and a good conditioner. And maybe even a comb.

    Posted by Orange  on  01/14  at  11:14 PM
  20. I believe someone once said to me: “A pony in every yard and a van in every garage!” So be it, i say.

    Posted by  on  01/14  at  11:35 PM
  21. Gary @ 9: “Rock and Roll” is fine, but doesn’t include nearly a long enough stretch where Robert isn’t singing about sex or hobbits or sex with hobbits.

    See, I think a song like that makes you forget, for almost four minutes, that Robert Plant tends to sing about sex with hobbits.  And a bustle in your hedgerow.

    Patrick @ 12:  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 would be a better beginning, yes.  I think I’ll bring this comment over to the CT thread as well, because I can see that I’ve got a few people over there who still think I’m saying “let Down syndrome be Down syndrome” or something like that.

    black dog buzzkill @ 15:  I wonder how a “cure” spokesperson will react when someone sincerely offers to help them fix what is obviously broken inside.

    Me too.  But really, the “let’s fix these broken people” is just a variation on my standard answer to the question of how to deal with people who don’t buy the idea that individuals with cognitive disabilities, even severe and profound cognitive disabilities, are fully human.  “Well,” I usually say, “you have to deal with those people as if they’re not fully human.” Not a helpful answer, perhaps, except insofar as the turnabout gets people thinking.  See also elaine @ 18.

    Orange @ 19:  I am holding out for the Race for the Cure, the one to raise money to get Robert Smith a kickass clarifying shampoo and a good conditioner. And maybe even a comb.

    You know, after I linked to that live performance I went back and looked at the original video.  And it turns out that Mr. Smith was once quite well-coiffed!  I’d totally forgotten.

    Posted by Michael  on  01/15  at  01:46 PM
  22. As a mother of a fabulous little three year old boy with Down Syndrome, I’m so glad to have someone on the rational side of things who can make eloquent posts about something that leaves me frothing. It made me so mad to read the comments at the NY Times post, with their ignorance and hate, that I was unable to form a coherent sentence to respond with. Thanks for your words.

    Posted by  on  01/15  at  03:41 PM
  23. "there are myriad social contexts (you’re reading one now!) in which it is no disability at all to be deaf.”

    “Ninety-five per cent of profoundly deaf school-leavers only reach a reading-age of nine. This functional illiteracy means that even the nuances of stories from basic tabloid newspapers are beyond the reach of many deaf adults… It would appear that whether a school’s language policy is sign or speech based is irrelevant to helping deaf children become competent readers.”
    http://www.literacytrust.org.uk/pubs/stern.htm

    Posted by  on  01/16  at  02:13 AM
  24. Darn it. Too long for Twitter:

    “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.”

    Posted by Susan Henderson  on  01/16  at  12:16 PM
  25. I recently had to explain this very idea - using the word cure in relation to wider disability - to one of my doctors. To give him credit, he was probably focussing on the (for me, orthopedic) single thing he was trying to fix, which is one ickle component of my disability. But then again, his misunderstanding of the subtlety of the terminology was pretty telling.

    My other point is made at great and more eleoquent length in Ben Goldacre’s hit UK book Bad Science (not sure of it ever got a US release cos it’s very UK-centric, lots about the MMR/Autism ‘debate’wink. His basic point is that journalists are very good at ponitificating on science and health topics but rarely have any expertise in specific areas or even science as a whole. In fact, published science papers are very often wilfully misunderstood in order to turn them into a simplistically dichotomous newsworthy discussion topic (do you think? Answer yes or no...). Ms Belkin’s random mixing of cure and mitigation in her article is such an example - given that the word or concept of cure appears nowhere in the original article.

    btw, I always found the ‘Drapers Van MMT’ mnemonic v useful for remembering those pesky avoire/etre verbs. It scraped me a C grade in my French O level.

    Posted by saltydog  on  01/16  at  10:37 PM
  26. I loved X-Men 3 because of precisely what Michael is saying. 

    I have mixed thoughts, though.  Is this development and argument like saying Lasik surgery is bad because it “cures” nearsightedness?  Personally, I have refused to get Lasik surgery because, even in my 50s, I am able to read very well up close without glasses if I choose.  If I went for Lasik surgery in my 40s, as was suggested, the consequence I was told included that I might end up having to need reading glasses as I got older--you know, like “normal” people.  In my current “condition,” where my eye muscles are so strong, but focused upon what is close to my face, I do not expect to need reading glasses for the foreseeable future.

    Yet, millions of others have undergone the Lasik treatment and have been made very happy by it--even if some may end up needing reading glasses, again like “normal” folks.

    Once we get away from saying words that anger us in this context, like “cure,” let’s hope we don’t fall into another bad habit of being hostile to someone with Down’s Syndrome who might be very happy to have a physical and mental change--and be willing to give up the gifts that Down Syndrome may have provided them in terms of memory, musical talent, etc.  I know if I was deaf, I’d want to not be deaf so I could hear music again, for example.  I should not be criticized for being colonialist or oralist should I make that choice.

    I guess all of this is an example of how we use words and concepts to attack each other instead of just being kind to each other.

    Posted by Mitchell Freedman  on  01/17  at  12:34 PM
  27. The MAIN thing I want to say is, if you make a T shirt that says RACE FOR THE REASONABLE ACCOMMODATION, I would buy one!

    (But the typeface would have to be attractive)

    On the OTHER hand, maybe I should design it myself! Nevermind! But seriously, WHAT AN AWESOME T-SHIRT that I would be PROUD to Wear!

    If I manage to get it together, I will let you know and I will make you guys some

    2) That guy Beck Wethers who climbed Everest and his nose and hand froze off, he had LASIK and what happened was, he went blind on top of Mount Everest because there isn’t much atmospheric pressure there. UNFORESEEN CONSEQUENCE OF LASIK SURGERY. Resulting in near-death, loss of fingers and nose!

    I draw the lesson from this that One Should Not Operate On THe Eyeball Unless One Truly Has Got to.

    You might as well say you think there is something UNATTRACTIVE about people who wear GLASSES! Which we all know is demonstrably false

    Posted by OVERLADY  on  01/17  at  04:49 PM
  28. Judging by the number of Lasik comments, it seems a number of people (though perhaps more at that other airspace than here) are under the impression that Michael owns stock in LensCrafters.

    Captcha: “against” as in “maybe I just don’t get it, but I really don’t think Michael is against curing some things that should and could be cured.”

    Posted by John Protevi  on  01/17  at  05:57 PM
  29. I really don’t think Michael is against curing some things that should and could be cured.

    That’s where you’re wrong, John—that’s precisely where you’re wrong.

    Also, I am opposed to re-setting broken bones.

    Posted by Michael  on  01/17  at  11:33 PM
  30. Also, I am opposed to re-setting broken bones.

    That’s because of all the stock you own in crutches companies, right? I think a pattern is beginning to emerge!

    Posted by John Protevi  on  01/18  at  12:04 AM
  31. I must admit I am glad the Jets appear to be cured of their propensity to lose big games.

    Posted by  on  01/18  at  09:50 AM
  32. 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!

    Well to paraphrase only very slightly:
    As you may know, I have many years of history being forced to deal with people who have no sense of empathy whatsoever. 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 without a shred of human decency or scrap of empathy play in creating a more humane, compassionate, and hospitable society. It is clear to me that, as a society, we need what these jackasses have to offer as bad examples.

    After all being selfish, irresponsible, deluded, and even colonialist is what makes them the very special people that they are - assholes. And where would the world be without assholes?
    I’m sure if you asked most of these people if they wanted to be “cured” they would refuse any sort of treatment, any “needle in the brain” that would make them more compassionate, more sensitive and less self-centered and boorish.

    In the end it is all about mitigation and reasonable accomodation. That is why we have the tea party movement, Rush Limbaugh’s radio program and even the Republican Party, because people without empathy are people too.

    Posted by rev.paperboy  on  01/18  at  10:54 AM
  33. Dr. King Jr on the importance of staying maladjusted to norms:

    ‘ There are certain technical words within every academic discipline that soon become stereotypes and cliches. Modern psychology has a word that is probably used more than any other word in modern psychology. It is the word “maladjusted.” This word is the ringing cry to modern child psychology. Certainly, we all want to avoid the maladjusted life. In order to have real adjustment within our personalities, we all want the well-adjusted life in order to avoid neurosis, schizophrenic personalities.

    But I say to you, my friends, as I move to my conclusion, there are certain things in our nation and in the world which I am proud to be maladjusted and which I hope all men of good-will will be maladjusted until the good societies realize. I say very honestly that I never intend to become adjusted to segregation and discrimination.

    I never intend to become adjusted to religious bigotry.

    I never intend to adjust myself to economic conditions that will take necessities from the many to give luxuries to the few.

    I never intend to adjust myself to the madness of militarism, to self-defeating effects of physical violence. But in a day when sputniks and explorers are dashing through outer space and guided ballistic missiles are carving highways of death through the stratosphere, no nation can win a war. It is no longer the choice between violence and nonviolence. It is either nonviolence or nonexistence, and the alternative to disarmament. The alternative to absolute suspension of nuclear tests. The alternative to strengthening the United Nations and thereby disarming the whole world may well be a civilization plunged into the abyss of annihilation. This is why I welcome the recent test-ban treaty.

    In other words, I’m about convinced now that there is need for a new organization in our world. The International Association for the Advancement of Creative Maladjustment--men and women who will be as maladjusted as the prophet Amos. Who in the midst of the injustices of his day could cry out in words that echo across the centuries, “Let justice roll down like waters and righteousness like a mighty stream.’

    Taken from Juan Cole today.

    Posted by  on  01/18  at  05:38 PM
  34. Rev.paperboy, that is a very deep thing you have said.  Lo these many moons I’ve railed against the idiotic jackasses in my life, those without empathy, those who laugh at other’s misfortune, and wondered why they were even permitted to draw breath.

    Now I know.

    Still sucks, but it is helpful to have a “good bad example” now and again.

    (captcha:  “soon”—as in soon justice will roll

    Posted by  on  01/19  at  12:21 AM
  35. I’ve read the comments to the NYT article and I think you’re missing something.  Part of the problem with the comments is that they are responding to Belkin’s obtuse closing question:  “If there were a cure for your child that would fundamentally change who he is, would you welcome it?” With this phrasing Belkin is assuming the possibility of a fantasy future that has nothing in common with the possible future of Selahi’s research, and many of the commenters confuse them.  I actually think that most of the commenters are talking about mitigation, and they are concerned that Power is against it, but in some of them the distinction is muddled because Belkin mudded it.

    Still, it’s true that some of the comments are strident and self-righteous, and you’re not wrong to call them on it.  But you don’t address what provoked them, which is Power’s own article.

    There’s a lot in Power that is troubling, to say the least.  The core of her argument is that her children “ do not need a needle in their brain to make them more functional.” What’s being invoked here?  Lobotomisers?  Frankensteins?  Evil scientists, that’s for certain.  We have entered the land of anti-vaccinators and AIDS herbalists, and I am not surprised that some NYT readers refuse to go there. 

    And what’s wrong with having more function?  If medication can improve memory, why is that not a desirable goal? If it can improve the results of the necessary years of loving and patient education, why is that a bad thing?

    But for Power, improved cognitive function itself appears to be a negative outcome.  She believes that “independence” is a negation of “community.” And she writes:

    “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.”

    This is not true of all “intellectual disabilities” - Tourette’s does not enrich the lives of others and Asperger’s does not inspire tenderness - but it is true of Down syndrome.  So what?  What is the argument here? It is wonderful that her children bring out compassion and tenderness in others.  But would improving their cognitive function be immoral because it would reduce the opportunities for compassion among children of ordinary genetic makeup?  Do we have to take this seriously?  Maybe Mother Teresa might find it compelling, but outside of a circle of Catholic saints, many people might find it to be fatuous.

    When Power asks,"Is the problem that my boys have a low I.Q., or that they live in an I.Q.-dominated society?” what can she mean?  Is it necessary to state that not every aspect of life is entirely socially determined and that although some differences are not inherently disabling, others are? Mitigating their effects by accommodating them is good, yes, but mitigating their effects by actually mitigating the disability is also good. 

    As Power herself says, her “ability to rationally argue my point is seriously compromised” because she cannot “read this article without hearing a judgment on the value of my children.” Power feels that she and her family are threatened by something that is not in fact threatening.  I think we hear fear talking.  Others hear selfishness.  Either way, what we are hearing is irrationality.

    Many of the commenters who take issue with Power have interesting things to say.  One is worth quoting:

    “My 14-year-old has Down syndrome, and he has taught me more about life and love than anyone else ever could. Having said that, I ache for him every day with the knowledge that he won’t have a more normal life. Ms. Power’s opinions are absurd and selfish.”

    I’m willing to accept this comment as a genuine expression of emotion from a person who does appear to have at least a faint idea of what she’s talking about.  Not that her point of view is the only valid one- but it is not, at any rate, an epic fail.

    Posted by  on  01/19  at  02:11 AM
  36. Bloix: 

    I’ve read the comments to the NYT article and I think you’re missing something.  Part of the problem with the comments is that they are responding to Belkin’s obtuse closing question:  “If there were a cure for your child that would fundamentally change who he is, would you welcome it?” With this phrasing Belkin is assuming the possibility of a fantasy future that has nothing in common with the possible future of Selahi’s research, and many of the commenters confuse them.  I actually think that most of the commenters are talking about mitigation, and they are concerned that Power is against it, but in some of them the distinction is muddled because Belkin mudded it.

    I’m not seeing that I’m missing this, honestly.  On the contrary, I thought that I was responding precisely to this.  I thought it was the whole entire point of my post.  But if you want—as the rest of your comment suggests—me to take issue with Power, then here’s how I’d do it:

    When Power asks,"Is the problem that my boys have a low I.Q., or that they live in an I.Q.-dominated society?” what can she mean?

    She can mean, among other things, that there are many social contexts in which mild mental retardation is not a significant disability, and yet people obsess over (and overvalue) IQ, as they have for the past 120 years or so.  You’re not going to make me go over The Mismeasure of Man again, right? 

    Is it necessary to state that not every aspect of life is entirely socially determined and that although some differences are not inherently disabling, others are? Mitigating their effects by accommodating them is good, yes, but mitigating their effects by actually mitigating the disability is also good.

    So your complaint is that my critique of Power’s position is implicit rather than explicit?

    As Power herself says, her “ability to rationally argue my point is seriously compromised” because she cannot “read this article without hearing a judgment on the value of my children.”

    Yeah, I objected to this—explicitly—in the CT thread.  The idea that someone is “compromised” and cannot “rationally argue” because they have a personal or emotional investment in a subject is badly mistaken, and cedes the high ground to people who have no idea what they’re talking about.  Far better to say, “because I live and work with people with Down syndrome, I have some insight into this disability that informs my skepticism about this research.” Bloix, you claim that Power’s skepticism comes from the land of anti-vaccinators and AIDS herbalists.  Perhaps it does.  But you should acquaint yourself with the long history of snake-oil salesmen offering Miracle Cures Mitigations for people with intellectual disabilities as well.  (When Jamie was born, piracetam was the latest rage.) There’s plenty of woo to go around on all sides.

    Posted by Michael  on  01/19  at  10:07 AM
  37. Oh, and Rev. Paperboy, thanks for speaking up for the rights of Asshole-Americans.  I remember the last time I argued for the reasonable accommodation of assholes:  they objected that I was treating them like people with disabilities.  But I accommodated them anyway.

    Posted by Michael  on  01/19  at  10:17 AM
  38. "Yeah, I objected to this—explicitly—in the CT thread.”

    Holy moly, do I have to read that, too?  Yes, I do, and I did, and it was an enlightening discussion.  Thank you for pointing me to it.

    “I thought it was the whole entire point of my post.”

    I thought the point of your post was that that Belkin and her commenters were making a grievous error by confusing cure with mitigation and accommodation, which you treat as a continuum.  I accept that.  But my point was that some of the commenters were responding to an equally grievous error in Power, who appears to reject mitigation entirely. It’s a false dichotomy to say that society and not leglessness is “the problem” as long as there is a potential for the invention of more useful prosthetics.

    “She can mean, among other things, that there are many social contexts in which mild mental retardation is not a significant disability, and yet people obsess over (and overvalue) IQ, as they have for the past 120 years or so.”

    Power is not arguing that her children are unfairly discriminated against due to poor performance on arbitrary I.Q. tests.  She is saying that she is aware of their cognitive deficits and that it would be wrong to use medication to mitigate them - wrong even if the improvement did not change personality, wrong even if the improvement meant better educational prospects and the opportunity for greater social interaction.  She’s against the “needle in the brain” - any sort of chemical intervention.  Not because she’s skeptical that there would be benefits, but because she believes that the promised benefits themselves are bad. That’s why she quotes the guy who claims that being leg-free is an evolutionary advance.

    One way to read her is that she finds that “independence” for her children would be a negative value, in that it erodes “community.” Many of the commenters to Belkin feel that she values her children’s dependence, and that’s why they accuse her of selfishness.  I didn’t feel that - I felt a fear that the scientists want to take her children away from her, if not literally, then figuratively. I don’t doubt that there’s a historic basis for that sort of fear, but in this case I think it does cloud her ability to think rationally.

    Posted by  on  01/19  at  12:22 PM
  39. Your commentary speaks of “reasonable accommodations”, which I applaud.  However, sometimes “cures” and “mitigations”, whether they be short or long term, are reasonable accommodations.  Sadly, your article fails to acknowledge the deeply personal nature of the choices before parents of children with any number of different disabilities when faced with the choice to medicate, mitigate or cure.  Every family comes equipped with their own set of challenges and may or may not have the education, patience, support or resources that you have had at your disposal.

    As the step-parent of a child who had problems with anxiety beginning early in her childhood, I lived through the debates as to whether to use anti-anxiety drugs or to try more natural means.  After all, the anxiety was part of who she was as much as Downs is part of who our friends son is.  My husband and I stood firmly on the side of trying every thing else first, but my step-daughter and her mother wanted to use medication.  She is doing very well on her medication and is happy with her life without her natural born personality trait of anxiety.  While it is true we will never know if she would have done just as well without the drugs, what matters is that she is happy and functioning. 

    So, while you Michael, might be one who chooses the drug free route, please do not pass such harsh judgment on parents who may have a very different set of circumstances which cause them to choose drugs as part of a plan to provide “reasonable accommodations” to their children.  The weight born by parents is heavy enough; please have mercy on them as they make the difficult choices which impact their entire families.

    Posted by  on  02/06  at  01:55 PM
  40. Just reading some Temple Grandin and i find her comments about “cures” nearly identical to yours.  She got her Ph.D. in animal science from the University of Illinois at Urbana-Champaign in 1989, i believe during the time you were there?  She uses the term “neuro-diversity” and argues that she must reject cures or treatment that diminishes her, and others, unique awareness and view of life.  And i love this quote: “If by some magic, autism had been eradicated from the face of the earth, then men would still be socializing in front of a wood fire at the entrance to a cave”

    Posted by  on  02/06  at  10:30 PM
  41. As a huge Jimmy Page, John Paul Jones and John Bonham fan, but much less so of Robert Plant, I cannot agree with you.  “Rock and Roll” is fine, but doesn’t include nearly a long enough stretch where Robert isn’t singing about sex or hobbits or sex with hobbits.  My 5 favorite 4+ Zeppelin minutes, off the top of my head, might include:

    1) “Over the Hills and Far Away”, particularly the part before Robert starts his higher octave squealing and then the double-stop ascending climax of the guitar solo why is my poop green dh Green Stool During Pregnancy

    2) The mellotron orchestral interlude and guitar coda of “The Rain Song”
    3) “Ten Years Gone”, all of it.
    4) “Houses of the Holy, especially the last 1.5 minutes with Robert shuts up and the three J’s keep chugging along.
    5. “Bron-yr-aur Stomp” all of it

    Posted by  on  02/07  at  10:24 PM
  42. One way to read her is that she finds that “independence” for her children would be a negative value, in that it erodes “community.” Many of the commenters to Belkin feel that she values her children’s dependence, and that’s why they accuse her of selfishness. advicelog aw something ji likewen
    I didn’t feel that - I felt a fear that the scientists want to take her children away from her, if not literally, then figuratively. I don’t doubt that there’s a historic basis for that sort of fear, but in this case I think it does cloud her ability to think rationally.

    Posted by  on  02/07  at  10:29 PM
  43. I was in search for a post something like this and found one here. Great post. Keep sharing!!

    Posted by Bathrooms Liverpool  on  12/08  at  02:34 AM

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