Life as Jamie Knows It

by Michael Berube

  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.

  They say you should never read the comments to anything published online. I can never seem to follow this advice, so when I read this column, a day or two after it was published, I went to the comments section and found to my dismay that the overwhelming majority of Ms. Belkin’s readers had weighed in to insist that parents who are skeptical of “curing” Down syndrome are selfish, irresponsible, deluded, and even colonialist. Colonialist! That was a new one. Down syndrome, Down syndrome rules the waves . . . the sun never sets on the Down syndrome empire.

  At this point I should probably make it clear that, as a general rule, I am not against curing things. As scholarship in disability studies has established, 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 (if you’re reading, you’re in one now) in which it is no disability at all to be deaf. Indeed, wherever there are Deaf communities using ASL, Deafness is a name for a linguistic minority, not a diagnostic category of disability. Nor is the resistance to “cures” exclusive to the Deaf. Gregor Wolbring, as you have just learned, does not want legs. And in Choosing Children: Genes, Disability, and Design, Jonathan Glover (whose work I will address in my final chapter) describes the case of a blind man who, upon having his sight restored, fell into a deep depression at the realization that the world was so much more drab and boring than he had imagined.

  And yet even in the most cure-averse precincts of disability studies, there is no Polio Restoration Society, no Smallpox Appreciation League, no Cholera Pride movement. Scholars may have critiqued the March of Dimes up and down the block for its pity-laden anti-polio campaigns featuring adorable “crippled” children, but none of those scholars can be said to be objectively pro-polio. And even though I am 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? Yes, I would. I would even be in favor of mining for it, unless that involved destroying the natural habitat of beautiful tall blue humanoids. My ability to argue my point rationally may be compromised on this one, but I can’t really bear the thought of Jamie, with his phenomenal memory, living through the experience of having that wonderful faculty eroded gradually and inexorably, to his complete and utter confusion. So I hope against hope for a cure. Or for mitigation.

  The larger question at stake here involves understanding that disability is not disease. That distinction was driven home to me in 2006 when I taught the first graduate seminar in disability studies at Penn State. My class was reading essays on the overlap between disability activism and gay/lesbian activism—an overlap concentrated on, but not exclusive to, the history of AIDS. One of my students, a young gay man, objected to the conflation of AIDS with disability in general. He understood, he said, why disability activists have resisted the idea that disability is something that can be “cured” or “prevented” with technological advances and medical interventions, just as gay and lesbian activists have resisted the idea that homosexuality is a curable disease. He understood why people with congenital disabilities would recoil from a prenatal-screening initiative whose assumptions seem to be that the world would be a better place if they had never been born. But, he said, if a cure for AIDS were found tomorrow, would he be happy? If HIV could be wiped from the face of the earth, would he support its eradication? Yes, yes he would. Without hesitation, without a second’s misgiving.

  It was a decisive, clarifying moment in the course, insofar as everyone (the professor included) had to ask just how far they were willing to go in criticizing the discourse of the cure. For weeks, we’d been reading the work of disability activists who argue, justifiably, that contemporary biomedicine frames everything in terms of the cure—the scientific breakthrough that will allow the lame to walk and the blind to see. But in all that reading, we’d never come across a disability activist who saw any problem with the eradication of disease. The elimination of smallpox and polio and tuberculosis and cholera and bubonic plague seems to most people to be an unqualified good for the species. Even in the work of disability activists who would never give a moment’s thought to providing all deaf people with cochlear implants, there is a common sense that there are some human conditions we are better off without.

  But—and this is the critical point—deafness isn’t one of them. Tay-Sachs disease is. Down syndrome is not even close.

  I admit that the line between disability and disease is sometimes blurry. Some diseases are disabling, yes; others are potentially disabling (diabetes, Graves, Hashimoto’s thyroiditis) but can be palliated with medication. But most disabilities have no disease etiologies whatsoever. Applying the cure/disease model to those disabilities is what philosophers call a category error, and fundamentally muddles our thinking about how to accommodate disability in society as best we can. At its worst, in the promotional campaigns of Autism Speaks, the disability-as-disease model not only focuses exclusively on the “cure,” as if autism itself needs to be wiped out, but adopts all the tropes of eliminationism. As the Autism Self-Advocacy Network points out, “Autism Speaks has compared being autistic to ‘being kidnapped, dying of a natural disaster, and having a fatal disease.’”

  When I’m in one of my black-humor moods, 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. In the comment thread after Lisa Belkin’s Motherlode post, the remark that struck me most vividly—partly because it was so strongly “recommended” by other readers—was this:

  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 [sic] such as celiac disease, Tay-Sachs or Sickle-cell be [sic] left 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.

  Remember that this is a comment in response to a column about Down syndrome. Not about cleft lip and palate, or celiac disease or Tay-Sachs or sickle-cell or anything else. In other words, the writer clearly sees no problem with discussing Down syndrome in the terms we ordinarily apply to fatal diseases. And this is why it is so important for the Jenn Powerses of the world not to undercut their legitimacy by saying their perspective is compromised by their closeness to people with intellectual disabilities: so many people talk about intellectual disability without having the faintest froggy idea what they’re talking about.

  I assure you that I am not cherry-picking a random comment from the Internet. I am talking about something that underlies all of Autism Speaks’ appeals for support—and that underlay the New York Times’ next major discussion of cures and mitigation for people with Down syndrome, written by Dan Hurley and published in the New York Times Magazine in July 2011 under the headline “A Drug for Down Syndrome.” In the essay, Hurley covered the work of Dr. Alberto Costa, a neuroscientist whose daughter Tyche has Down syndrome. Costa has
been experimenting with the drug memantine, giving it to Ts65Dn mice, which were developed in the 1980s by Muriel Davisson and exhibit many of the traits associated with Down syndrome.

  Hurley interviewed me for the essay, and I appear in its antepenultimate paragraph, trying to say some of the things I have just elaborated here. “Nobody would be against giving insulin for diabetes,” I am quoted (accurately) as saying. “But Down syndrome isn’t diabetes or smallpox or cholera. It’s milder and more variable and more complicated. I’d be very leery of messing with the attributes Jamie has. He’s pretty fabulous. At the same time, I’m not doctrinaire. If you’re talking about a medication that allows people to function in society and hold jobs, how can you be against that?” The following paragraph then pivots away from my remarks, reporting that “the parents I met who participated in Costa’s study expressed little of Bérubé’s ambivalence.” Yes, well: you could say they were a self-selecting group, since they had self-selected into Dr. Costa’s experiment. But what the ambivalent-Bérubé paragraph doesn’t tell you is that the insulin/diabetes analogy was Hurley’s question to me. The reason I mentioned diabetes and insulin in response is that I was trying to push back against a leading question—a misleading question. Hurley quite clearly was working with a syllogism in which insulin is to diabetes as memantine is to Down syndrome, and in which parental resistance to the latter makes no more sense than parental resistance to the former. I learned later that Hurley had written a book on disease prior to writing this cover story on disability for the Times Magazine. Its title: Diabetes Rising: How a Rare Disease Became a Modern Pandemic, and What to Do About It. When I discovered that, I was left to conclude that when all you have is an insulin hammer, everything, even Down syndrome, looks like a diabetes nail.

  Hurley has since written a book titled Smarter: The New Science of Building Brain Power. Personally, I am all in favor of building brain power. But on the subject of building brain power among people with intellectual disabilities, let’s review some context, shall we? People with intellectual disabilities and their caretakers know that there is a long and sorry history of snake-oil “cures” for intellectual disability; the most recent, which was all the rage when I was writing Life as We Know It, was piracetam, the alleged-miracle nootropic drug that was claimed to produce stunning improvements in the cognitive capacities of children with Down syndrome. Its leading exponent was Dixie Lawrence Tafoya, who in 1995 was given a national-network platform on ABC-TV’s Day One to promote her snake-oil mixture. In 1997 I wound up keynoting a Down Syndrome Society event in St. Louis with her—she was not present, but spoke to the group from her home in Louisiana—and I heard her insist, with evangelical fervor, that anyone who was not giving their kids her miracle supplement was actively harming them.

  Janet and I never gave Jamie piracetam. In the closing pages of Life as We Know It, I referenced the debate over nootropic drugs and vitamin therapies, noting in my final paragraph that Jamie had “learned to take vitamins.” This prompted a number of readers to write to me and ask whether we were going the whole nine yards with Dixie Lawrence Tafoya. I replied that we were not, and would not, but that we saw no harm in giving Jamie supplemental antioxidants, since we’d noticed that he would devour ketchup, and we had heard that children with Down syndrome love ketchup for the lycopene. That was our line in the snake-oil-soaked sand: antioxidants yes, spray vitamins yes, ketchup yes, piracetam no.

  I know that contemporary experiments with molecular biochemistry are light-years away from where they were a few decades ago. And surely Alberto Costa’s work with Ts65Dn mice is far more sophisticated—not to mention more legitimately peer-reviewed—than Dixie Lawrence Tafoya’s homemade piracetam cocktail. But still, I have to note that the title of Hurley’s essay isn’t any different from the terms in which Lawrence peddled her wares: a drug for Down syndrome. And when I take a step back from all the reasons why parents and caretakers of people with intellectual disabilities would have good reason to be skeptical of announcements of stunning breakthroughs and miracle cures—er, mitigations—I think, Wait a minute here. We are talking about experiments to enhance the cognitive capacities of mice, experiments that are then approved for clinical trials in humans with intellectual disabilities. Seriously? For the love of Mike, hasn’t anybody here read Flowers for Algernon? Build your brain power, people!

  A year after Hurley wrote his cover story on Costa, the Times followed up with an item in its 6th Floor blog. In Ilena Silverman’s “Can a Pill Make People with Down Syndrome Smarter?,” Hurley reported the disappointing news that “of the 14 cognitive measures tested before and after treatment, those taking memantine only did significantly better than those taking a placebo on a single test. And it was not one of the two ‘primary’ measures designated by Costa before the study began.” One wonders about the amazing cognitive-enhancing properties of this mysterious miracle drug, “placebo.” And yet the final word in this update is given to yet another researcher whose characterization of Down syndrome is fundamentally wrong:

  “We still do not know if we have something that will actually work,” said Alcino J. Silva, professor of neurobiology, psychiatry and psychology at the University of California at Los Angeles. Even so, Silva added, “In my mind, the big story here is that for the first time we have a logical path that can take us from a mental health problem like Down syndrome into the development of targeted treatments. This is indeed a big deal.”

  In my mind, the big story here is that we still have researchers in neuroscience who think of Down syndrome as a mental health problem, almost in precisely the same terms whereby autism was once conflated with schizophrenia. Because of that fundamental category error, I submit, certain neuroscientists’ ability to rationally argue their point is seriously compromised.

  I am not kidding when I say that I take Jamie on my academic business trips and that we try to help him develop his skills as a traveler in lieu of drug therapies. For what are Janet and I doing but trying to build his brain power, to enhance his cognitive capacity? There’s a reason people (including Jamie) say that travel is broadening: it happens to be true.

  However, I am mindful that not everyone has, or can have, Jamie’s opportunities. And when I first thought of travel as a way for Jamie to begin to tell his own stories, I did not anticipate that he would eventually run into a school aide who considered him (and his parents) the central Pennsylvania version of Eurotrash. Apparently you can tell your schoolmates stories about having Coke for breakfast in Dublin or going to La Museé Oceanographique in Monaco only so many times before someone gets the sense that you are a jetsetter who seriously needs to check his privilege. Even though Jamie’s travel-and-cognitive-enhancement program began in Pittsburgh, Brooklyn, and Ocean City, Maryland.

  But it’s quite clearly true that there is a substantial difference in our family circumstances between the life we knew in the early 1990s, that of struggling young assistant professors in the humanities, and the life we know now, as established middle-aged academics who get speaking invitations and can afford travel abroad. We know how fortunate we are, and Jamie does too. Only once have I had to explain to him the rules about traveling with me on business: at one of my lectures, at a small liberal arts college in the Midwest, he came up to the podium as I was speaking and asked me to change the DVD in his laptop. I apologized to the audience for the interruption, changed Jamie’s DVD, resettled him in his place at a table on the side of the auditorium, and resumed where I had left off. No one seemed very put out by this, but it was bad form on our part, and I spoke to Jamie afterward, telling him that when I’m giving a talk at a college or university, I am working, and if he can’t take care of himself while I am working, he can’t come along with me on business trips. This may sound harsh—but he was perfectly capable of changing the DVD by himself, and more generally, he needed to know that the only reason he and I had made that trip was that people at that college had invited me to deliver a lecture. That was the bargai
n, and we—Jamie and I—had to hold up our end of it. I am pleased to report that I have had to explain this to Jamie only once.

  But traveling is only one of the ways Janet and I have tried to build Jamie’s brain power. Another of our strategies involves the history of Western art and music. I know, it sounds crazy, right? So old school. So useless, so frivolous, so meerschaum-chomping humanist, so Allan Bloom (though he did not chomp any meerschaums). In Dan Hurley’s New York Times Magazine essay, Dr. Costa makes a point of demonstrating that he has other priorities for his daughter Tyche:

  On the whiteboard at the front of the room, Costa wrote out an algebra problem for her to solve: 8x2 – 7 = 505.

  “She’s one of only two people with Down syndrome who I’ve ever known to be capable of doing algebra,” Costa said. “Normally we give her a problem before she goes to bed.” As she solved the equation, taking six steps to show that x equals 8, he said, “It’s basically instead of a bedtime story.”

  When I read that Dr. Costa knew of only two people with Down syndrome who could do algebra, I thought of Sir Arthur Eddington’s famous line (though it is not so famous as Allen Iverson’s “practice” rant, and it is not preserved on the Internet) when he was asked in 1919 if it were true that only three people understood Einstein’s equation for general relativity: “Who’s the third”? That night, I asked Jamie what x might be if 5x equaled 35. “Seven,” he shot back, seemingly without thinking.

  I admit that this very basic algebra is not as impressive as Tyche Costa’s ability to solve 8x2 – 7 = 505. But the basic concept of the problem—the abstract understanding that x stands for a number in an equation—was not a problem for Jamie.

  Bright kids with Down syndrome—and there are many bright kids with Down syndrome—can be usefully challenged with math problems. And in fairness to Dr. Costa, it is not as if he was all math all the time; Hurley’s essay proceeds to note that Dr. Costa also bought Tyche the Rosetta Stone guide to learning Portuguese, and that she did well with it. All I’m saying is that bright kids with Down syndrome can be challenged with algebra and bedtime stories. And art. And music. And the entire recorded history of human achievement. Indeed, all kids with Down syndrome, and many other intellectual disabilities, can be challenged—or rewarded!—with exposure to any or all of the above. If a child isn’t into algebra, whether because of lack of capacity or lack of interest, perhaps something else will strike her fancy.