Today at Bioethics Forum, my colleague and friend April Herndon has a new piece up about the "magic pill" question asked of queer and disabled folk: If you could take a pill to make you "normal" (meaning straight; non-impaired), would you take it?
Is it a coincidence that a friend of mine would write about a "magic cure" while I've been writing about the first organized "paradigm" for using a pill to prevent homosexuality in utero? Not exactly.
I've certainly been influenced, in my professional and activist thinking, by April's decision to "go lesbian," as an elderly in-law used to call this kind of life change. For example, it was April's keen analysis that made me realize I needed to stop doing my Because-Because-Because logic of LBGT rights: talking about L, B, G, and T identities as if they must be accepted socially because they must not be chosen because no one would choose that.
I'm not sure why I didn't come to just get, as April does, that that logic shoves the onus of discrimination (i.e., the cause of suffering) onto the oppressed person rather than where it belongs (on the oppressor). You'd think I would get this, given that I am white and grew up with a black brother in an essentially segregated neighborhood.
I myself asked my black brother the "magic pill" question once, when I was working on a book about conjoined twins. Before working on that book, when under the leadership of Erik Parens we were part of the Surgically Shaping Children Working Group at the Hastings Center, my colleague Adrienne Asch had asked me, "How come you get it?" By that she meant, how come I seem to understand the politics of disability the way people with disabilities do, even though I didn't have a significant impairment?
I thought about it and, though I'm still not sure of the answer, I realized maybe it was because my brother was constantly being disabled by his biological difference. That is to say, many around us (teachers, cops, neighbors) took his simple racial difference and made sure it was turned into a social disability. That led me to understand the distinction between a difference or an impairment (being black; having atypical genitals; being blind) and a disability (being kept down socially for these traits).
So I asked my brother a variation the magic pill question: If you could have your life run over again differently, what would you chose? Being raised in a black family? Being white?
My brother very sensibly added that the question made no sense. He explained that he would not be who he is if he had not had the body and life he had, and so the question was meaningless. He did add, though, that he wished he had had one thing handled differently: he wished he had been introduced to one other black kid in the same situation, and been allowed to talk about it with that kid while he was growing up.
This fascinated me, because my brother knows very little about my work (he thinks its weird), but he had independently hit upon what I had learned in my work was the most effective, lowest risk intervention to help families dealing with a socially-challenging body or identity: peer support.
And so, reading April's essay, I'm struck by several things. One is how people like her--people who dare to choose to be queer--find themselves in a place where the usual peer support doesn't work; it isn't generally OK in queer circles today to talk about your identity as choice. Another is how, no matter how progressive we think we are, finding ourselves asking the "magic pill" question means we have not really accepted another person's life as a reasonable option.
Finally, in reading April's piece, I'm struck again by how much better off-or at least safer-families with CAH girls could be if they were offered genuine peer support, rather than an alleged magic pill (prenatal dexamethasone). On that point, I need to turn to a relevant passage from my collaborator Ellen Feder's essay for the Surgically Shaping Children volume.
Here Ellen is speaking of an interview she conducted with a mother of an adult daughter born virilized from CAH. The mother, called Ruby, is remembering one of the first support groups formed for parents of children with CAH, decades earlier, when doctors were mostly concerned with making sure the medically-necessary endocrine management of the CAH was going OK:
"Ruby remembered the [parents peer] support group that doctors had finally permitted parents involved in the long-term study to form. While parents spoke about the challenges involved in staving off adrenal crises and coping with communicating their children's needs to teachers and school nurses, the children played outdoors. Seeing their sons and daughters interact, parents began to take note of the fact that their girls and boys rarely split up along gender lines to play, and the parents of girls became interested in how similar their little ‘tomboys' were to the other little girls. Emboldened by her observations of the other children and understanding, for the first time, that she was not alone, Ruby started to raise questions. ‘Why,' Ruby remembers insistently asking the doctors, ‘do my girls behave this way? And what can I do to help them be more like girls?'"
I support LBGT rights. But, like April, I worry about people hitching those rights to the wagon of innateness. Not only does it not capture the experience of all queer people (especially women), it seems too easy to then turn being queer into an impairment, one that might be preventable. And that seems to be just how we've seen it constructed by some clinicians who are trying to see if they can prevent some lesbianism with prenatal dexamethasone.
I put this problem to Dean Hamer and Simon Levay, who have been seeking a genetic basis for male homosexuality, shortly after Hamer had an editorial related to this in the LA Times. Both seemed to think I was just imagining magic pills being offered to parents to prevent gay children. . . .
Ellen Feder relates the end of Ruby's tale: "Ruby herself suspected then that it was the questions [about gender atypicality that] parents were beginning to raise that prompted doctors to withdraw their authorization of the [CAH parents] support group and to take measures to ensure that it no longer met."
What were the doctors afraid of? What were the parents afraid of?
I know what I'm afraid of.