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Thursday, January 14, 2010

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 Michael on 01/14 at 08:10 AM
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