Shyness? Laziness? These are traits to be eliminated from the species now? But some of my best friends are shy and lazy! Why, I myself spent the first twelve years of my life being shy, and the next twelve being lazy!
I joke, but this is very serious business. I should make clear that I have no problem with people taking medication for severe shyness or social anxiety—or for a wide range of psychiatric conditions from depression and PTSD to schizophrenia. (Indeed, my late mother once refused to believe that I was the only member of our family not taking some form of medication.) I strongly suspect that such medications are overprescribed, especially to parents of unruly children, but I have no doubt that the underlying conditions they seek to mitigate are real and that palliative measures are not to be rejected merely because they might be applied too widely. I do, however, have grave doubt that ordinary shyness or laziness constitute threats to human flourishing so substantial that we as a species would be better off without them. And I note that this anti-shyness-and-laziness position follows, curiously, from Glover’s conflation of “disorders and disabilities,” which is very close to the conflation of disability and disease entailed in the analogy between disability and cancer. It appears that once you start enumerating human traits you find undesirable, and once you start thinking of them as if they constitute disorders or diseases, you just can’t stop yourself from imagining what it would be like if we could “cleanse the world” of them.
Again, there are many diseases I would like to see disappear, and I can say this without sounding like Victor Frankenstein, dreaming that he might “banish disease from the human frame, and render man invulnerable to any but a violent death.” And one of the traits enumerated by Gattaca’s genetics counselor, and targeted for screening, happens to be a propensity for violence—something whose elimination I would find relatively unproblematic, though I strongly doubt we will locate a genetic sequence for violent temper, and I tend to think that some forms of violence (though not all) are responses to severe social injustice. But thinking of shyness and laziness in these terms, as obstacles to flourishing, seems to me another category error. It’s not quite as bad as thinking of disability as something that is to be contrasted with human flourishing, but it’s still not a good thing to think with.
In 2012, I had the good fortune to meet someone who could explain for me exactly why: Glenn Treisman. It was at the Conference on World Affairs in Boulder, Colorado, an extraordinary week-long festival of panels on “everything conceivable” (as it quite accurately bills itself). I was assigned to eight panels in four days, on subjects ranging from Shakespeare to sports to “Ethics and the New Genetics,” for which my copanelists were Joseph McInerney, director emeritus of the National Coalition for Health Professional Education in Genetics; Vivian Siegel, director of Scientific Education and Public Communications at the Broad Institute of MIT and Harvard; and Treisman, professor of psychiatry and behavioral sciences and internal medicine at the Johns Hopkins University School of Medicine. The presentations of my copanelists were every bit as terrific as you might imagine, and unlike every academic conference I have ever attended, everybody kept to the strict time limit. (In every panel!)
Treisman’s talk swiftly and decisively put to rest the claims of “liberal eugenics,” pointing out not only that we have no idea how to go about eliminating things like shyness or laziness but also, and more important, that we have no idea whether some of the traits we now consider undesirable or harmful actually have survival value for us as a species. In other words, for all we know, our capacity for depression is what got us through the Pleistocene. Likewise, for all we know, shyness and laziness are, in evolutionary terms, two of our saving graces.
Just over a year earlier, in January 2011, I had a similarly instructive exchange, this one online, courtesy of the National Humanities Center’s On the Human project. My contribution to that multiyear project was a version of the critique of Glover I have offered here, and it drew this response from Tom Shakespeare, one of the founders of the disability rights movement in the United Kingdom (and yes, a distant descendant of that Shakespeare). I will quote it at length, because it underlies much of my thinking in this book:
To me, disability is not neutral, it is a decrement in health. Not a tragedy, granted, but not just another difference like sex or ethnicity. Disability may sometimes open one up to other possibilities (as might poverty, HIV and divorce) but that does not make it less of a predicament. Of course, environments contribute mightily to the burden, and it is a matter of justice for us to try and lessen those physical and attitudinal barriers. People are indeed disabled by society—but by their bodies too. (I also find the distinction between illness and impairment ultimately unhelpful.) Those of us born with our disabilities are used to our form of life, and we rarely bother worrying about it—we cannot imagine any other way of being. But ask any disabled person how they would feel about losing further abilities, and most would be less sanguine, I think. (I was broadly happy to spend forty plus years with restricted growth. But I regret deeply spending the last couple of years as a paraplegic, despite the fact that I am probably as happy today as I have ever been.)
I would like to deconstitute the disability category a little. I think there is a danger in equating disability, as some utilitarian bioethicists do, with all the worst and most difficult forms of life—Tay Sachs or Lesch Nyhan or other profound limitations in which the possibility of flourishing seem[s] truly remote. But I also think there is a danger, as some disability advocates do, of equating disability with the other end of the scale—with Deafness, or dwarfism, or Down syndrome, conditions which hardly diminish flourishing at all.
Where I part company with Jonathan Glover is his perfectionism—his hope that we can not only put disability behind us, but that we can, and should, improve on average human nature and human embodiment. My messy, possibly incoherent, position is that we should accept a measure of diversity and difference, because human frailty is unavoidable, but that where the balance tips into suffering and restriction, we should do whatever we can to avoid it. While still valuing, supporting and including all those individuals who end up, despite our efforts, with profound disability.
Shakespeare misreads me in one important respect, attributing to me the position that disability is never a decrement in health (my actual position: sometimes it is and sometimes it isn’t). And his critique of the “social model” of disability, expressed here as skepticism about the usefulness of the distinction between illness and impairment, will be troublesome for many people in disability studies. (Shakespeare was one of the people who developed the idea of the social model of disability decades ago; he now finds that model inadequate for people with intellectual disabilities and psychiatric conditions, and I think he is right about that.) But I love the rest of this rich and thoughtful response.
Shakespeare’s comments on “additional disability” strike me as salutary reminders not to romanticize disability or to pretend that all disabilities are merely “differences” like other identity categories. (Think again, as I have, of Jamie almost losing a foot.) And yet even Shakespeare’s description of his paraplegia is ambivalent: he regrets being paraplegic after living his life happily with achondroplasia . . . and yet he remains as happy as he has ever been. As for his final paragraph, I agree with every word. But it’s the middle paragraph I cherish most, for its enumeration of conditions that “hardly diminish flourishing at all”—Deafness, dwarfism, and Down syndrome. That is the whole enchilada, right there. If you see things like Deafness, dwarfism, and Down syndrome as unremarkable aspects of human diversity and difference, part of ordinary intraspecies variation, you will never make the mistake of thinking that their eradication constitutes an unambiguous species-wide good. You will never make the mistake of thinking of these conditions in the terms you would apply to fatal diseases. And you will never embarrass yourself in public by proclaiming that people with these conditions have no future.
Yet I know
there is not a chance in the world I will ever be able to win universal support for this position among my fellow humans. For every Tom Shakespeare who says, “Meh, Down syndrome, no big deal,” there will be dozens of people, some of them prospective parents, who think of Down syndrome with horror and revulsion and who will seek prenatal testing precisely to ensure that they will not give birth to a child with trisomy-21. Over the past twenty years, I have taken every available opportunity to say two things about this: the right of a woman to terminate a pregnancy must be respected, regardless of the reason (this is an especially important argument in states whose legislatures are trying to outlaw abortion when the fetus has Down syndrome); and people shouldn’t be snookered into believing that prenatal screening can catch every kind of significant disability. I realize, however, that for some people this second argument amounts merely to kicking the can down the road a piece. Yes, yes, screening can’t catch everything, they will say. But it can very well catch Down syndrome and other genetic anomalies, and that’s precisely why we’re availing ourselves of it—because we don’t want our children to have anything like that.
In my contribution to the fourth edition of the Disability Studies Reader, edited by Lennard Davis (an essay on genetic screening and democratic deliberation), I mention the work of Rayna Rapp, whose 1999 book Testing Women, Testing the Fetus: The Social Impact of Amniocentesis in America has been such a huge influence on the way I think. Indeed, one reason it has made such an impact on my thinking is that it introduced me to a wide array of people who do not think as I do. Some of them go ahead with pregnancies that I think might warrant termination, as when one woman received a diagnosis that the fetus had partial trisomy-9; some of them decide that other anomalies might be fine but Down syndrome is not, because, as one woman puts it, “If I had this baby at 44, and it had Down’s, who would inherit it? Oh, not Alex, not Stephan—it’s always the girls, the girls who get caught. If I had that baby, it would be Livia who inherited the family problems.” Still others decide, “Meh, Down syndrome, no big deal,” while others tell Rapp, “Having a ‘tard, that’s a bummer for life,” and that if the baby “can’t grow up to have a shot at becoming the president, we don’t want him.”
That last remark comes from prospective parents whose fetus was diagnosed with Klinefelter syndrome, a trisomy involving an extra × chromosome. It is even milder in its effects than Down syndrome; here’s the Genetics Home Reference description of it, courtesy of the National Institutes of Health.
Affected individuals typically have small testes that do not produce as much testosterone as usual. Testosterone is the hormone that directs male sexual development before birth and during puberty. A shortage of testosterone can lead to delayed or incomplete puberty, breast enlargement (gynecomastia), reduced facial and body hair, and an inability to have biological children (infertility). Some affected individuals also have genital differences including unde-scended testes (cryptorchidism), the opening of the urethra on the underside of the penis (hypospadias), or an unusually small penis (micropenis).
Older children and adults with Klinefelter syndrome tend to be taller than their peers. Compared with unaffected men, adults with Klinefelter syndrome have an increased risk of developing breast cancer and a chronic inflammatory disease called systemic lupus erythematosus. Their chance of developing these disorders is similar to that of women in the general population.
Children with Klinefelter syndrome may have learning disabilities and delayed speech and language development. They tend to be quiet, sensitive, and unassertive, but personality characteristics vary among affected individuals.
Personality characteristics vary among all individuals, one might add, including people who will abort a pregnancy if they believe their prospective child does not have a chance of becoming president of the United States.
I have thought long and hard about that remark as Jamie has grown, precisely because I never expected him to become president and never imagined that as a criterion for a life worth living. In my Disability Studies Reader essay, I wrote, “I remain unpersuaded that there are transcendent moral virtues to be advanced by compelling such parents to bear children with disabilities, even though the disabilities in question are relatively benign; indeed, I shudder to think how such parents will treat their disabled children if they are compelled to bear them against their will.” On my blog, I was somewhat more colloquial, as befits the discourse of blog posts: “In both the deontological and utilitarian traditions,” I suggested, parents who say such things “are technically known as ‘assholes.’” But the underlying point should be clear: one reason I argue that prospective parents should be trusted to make their own decisions about prenatal screening is that some of them may decide that they cannot be enlightened, humane, and welcoming parents if it turns out that their child has a disability. And one reason I argue that people should have access to prenatal screening but not to genetic enhancement is (you guessed it) that some of them do not, in fact, have enlightened, humane, and welcoming attitudes toward children with disabilities.
At the same time, I agree with Tom Shakespeare that Tay-Sachs and Lesch-Nyhan are “profound limitations in which the possibility of flourishing seem[s] truly remote,” and I do not see any reasonable grounds for preventing prospective parents from screening for those conditions. I think they are more accurately described as diseases rather than disabilities, and I place them in the category of diseases whose eradication would constitute a species-wide good. This position has earned me sharp criticism in some disability studies circles. I remember a forum at Columbia University in 2010 at which I was told that my advocacy of screening for Tay-Sachs was indistinguishable from the Nazi designation of “life unworthy of life,” Lebensunwertes Leben, which underlay Hitler’s extermination of the disabled. It is never a pleasant experience being likened to Hitler, though analysts report that on the Internet, someone is likened to Hitler three thousand times every minute. (Perhaps I exaggerate, though Godwin’s Law clearly states that any long comment thread on the Internet inevitably produces a comparison to Hitler.) I replied, calmly (I hope), that I was not saying that children with Tay-Sachs disease were unworthy of life. I was simply acknowledging that children with Tay-Sachs experience short, sometimes excruciatingly painful lives in which they gradually succumb to a devastating degenerative disease and that you, my aggrieved interlocutor, do not have the moral authority (nor do I, and nor does anyone else) to bar anyone from seeking prenatal screening for the condition.
I could also have referred my interlocutor to the remarkable writing of Emily Rapp (no relation to Rayna), whose account of her son Ronan, in the New York Times and in the 2013 book At the Still Point of the Turning World, is testimony to the fact that the parent of a child with Tay-Sachs can feel as much love and tenderness as any other parent. Rapp’s work also demonstrates that the parents of a child with Tay-Sachs can feel as much anguish and sorrow at their child’s death (Ronan almost made it to his third birthday) as anyone else, and can find powerful and enduring significance in their child’s brief and difficult life. But that is not the same thing as suggesting that Ronan’s life arguably fell below that “zero line” at which life is, by a small margin, just worth living—as Rapp herself has suggested.
In a 2012 essay for Slate, she wrote:
I love my son more than any person in the world and his life is of utmost value to me. I don’t regret a single minute of this parenting journey, even though I wake up every morning with my heart breaking, feeling the impending dread of his imminent death. This is one set of absolute truths.
Here’s another: If I had known Ronan had Tay-Sachs (I met with two genetic counselors and had every standard prenatal test available to me, including the one for Tay-Sachs, which did not detect my rare mutation, and therefore I waived the test at my CVS [chorionic villus sampling] procedure), I would have found out what the disease meant for my then unborn child; I would have talked to parents who are raising (and burying) children
with this disease, and then I would have had an abortion. Without question and without regret, although this would have been a different kind of loss to mourn and would by no means have been a cavalier or uncomplicated, heartless decision. I’m so grateful that Ronan is my child. I also wish he’d never been born; no person should suffer in this way—daily seizures, blindness, lack of movement, inability to swallow, a devastated brain—with no hope for a cure. Both of these statements are categorically true; neither one is mutually exclusive.
This is precisely why we need, following Tom Shakespeare, to “deconstitute the disability category”: Ronan Rapp’s experience of life was nothing remotely like James Bérubé’s. And this is precisely why we need to leave the decisions about prenatal testing and so-called “selective” abortion to the women who will be most affected by them.
And here, at last, is why I don’t see Down syndrome as something whose eradication from the population would be a good thing. It is not because people with Down syndrome bring joy into “our” lives. Though they may and often do, as Jamie has often done in my life, we must treat all people as ends in themselves, not as means to an end (even if that end is the augmentation of our collective joy and our sense of human potential). And it is not because anyone or anything in this world has “intrinsic” worth; things and people have only the worth we assign to them. That is what “value” is: it is the expression of a social relation. Rather, it is because on the whole, people with Down syndrome enjoy being here, now that we are no longer institutionalizing them and consigning them to horrible lives in unspeakably filthy conditions. Jamie, for his part, is so far above the zero line he might as well be airborne. The world is a better place for his being in it, I am quite sure of that, but the most important metric is his enjoyment of the world, not the world’s enjoyment of him.
Life as Jamie Knows It Page 22