Thursday, January 29, 2015

Reading Ellen Feder's “Making Sense of Intersex” Part 1

So I picked this book up at the new non-fiction section of my local public library a week or two ago, not really knowing what it was. If I'd have noticed the subtitle “Changing Ethical Perspectives in Biomedicine” maybe I'd have clued that it is a difficult work of professional academic philosophy, Nietzsche, Foucault, Judith Butler, that sort of thing, citing everything from Dialogues in Pediatric Urology to the Journal of Clinical Ethics to Social Semiotics. But hey, I'm an ex-professional philosopher, and a non-binary person myself, let's tackle it.

Setting the Scene

First observation, this book assumes you already know a lot of specifics of the issues in 20th and 21st century American treatment of Intersex children, (which I kinda do), or if you don't that you are willing to read a lot of other things that have been written about it first. This is not entirely unfair. A lot has already been written, and it is a scandal that professional ethicists and gender theorists really ought to know about by now. But assuming you, my humble blog reader, don't, here is my opinionated overview. The treatment of intersex kids from 1955 to 2006 (and in many ways before and after) is the biggest failure in American medical ethics, at least since the Tuskegee Syphilis experiments of 1932-72, and the ethicists jumped all over that as soon as the whistle was blown, even if they weren't able to prevent it. For the last half of the twentieth century, the official “Standards of Care” for intersex kids, called for things like removing the penis of a infant boy whose penis was deemed too small, performing an infant vaginaplasty, using hormones, and pressuring the parents to raise the child as a girl, and never ever tell the child, or anyone in the family that there had ever been hints of masculinity. Or if a girl's clitoris was deemed too large, it was to be mostly surgically removed, regardless of how that might effect her later sexual experience. What mattered most was normal-shaped infants. Or if an older girl was found to have undescended testes rather than ovaries (usually along with being genetically XY, but insensitive to androgens), her testes were to be removed, she was to be told they were ovaries but damaged, and no hint was ever to be given to her than she might be genetically male, or that the real health risk was that undescended testes are a little more likely to become cancerous eventually. Or the kids who had their genitals examined by scores of doctors and med students in turn, often with poking and prodding, at a teaching hospital each year while they grew up. The horror stories go on. Sometimes even the parents were lied to, usually they were pressured, and often they were urged to bear the weight to their decisions in silence. Basic medical ethical guidelines like informed consent, or trying to avoid paternalism, were routinely violated. Many hard decisions were made on the basis of confident claims from doctors for which there was no evidence, and no attempt to gather evidence for the future. And unlike most of the other big medical ethics scandals, many people knew about this and signed off on it for decades. Somehow gender ambiguities seem to have created this huge moral blind spot in otherwise thoughtful and caring Americans. Eventually, many of the grown children who had been subjected to these “standards of care” began learning the truth, and speaking out publicly against them. Journalists, and academics, and philosophers, and doctors with doubts got involved. By 2006 the medical consensus had definitely shifted on some of these issues, but the process was very clearly led by Intersex activists rather than by ethicists, or doctors, or parents of intersex kids. And in many ways, the current standards of care, aren't much better than before, continuing to encourage “normalizing” genital surgery for infants, for instance.
Participants of the 3 International Intersex Forum, Malta 2013

My personal baggage

Now obviously this is going to resonate with me in all kinds of complicated and personal ways. The lines between trans and intersex are intricate and unclear. Transgender people fought our own battle against overly paternalistic “gatekeepery” standards of care, and the stigmatizing of trans as a disorder, among doctors and mental health professionals over roughly the same time period. Indeed, the thought and philosophy of doctor and gender theorist John Money turns out to be a key part of the paternalist side of the debate for both trans and intersex.

One of the first doctors to argue publicly against the old standards of care, summarized the thinking of doctors who supported the old standards of care like this: “intersexed individuals could not possibly live normal lives as intersexed individuals and … the only chance they had for happiness and psychological well-being was the establishment of a secure male or female gender identity. Second, there simply was no precedent for [such individuals] living as normal in our society. [Darbuul 2000].” That is to say the impossibility of a non-binary person like ME PERSONALLY ever being normal, or happy, or having psychological well-being, or having any precedent in our society, was the main reason these terrible things were done to these kids. For decades. At least in the minds of the doctors. Intersex or trans, it is NON-BINARYNESS that is really the main issue here, in many cases.

So I want to be a good ally to my intersex siblings and friends (an old friend came out privately to me as intersex, when I came out publicly as trans). And that surely means not projecting too much of my own stuff onto their situation. And, in fairness, part of the issue is that intersex is a big umbrella term, and the issues around say Congenital Adrenal Hyperplasia, are not the same as the issues around Androgen Insensitivity Syndrome, or for that matter 5-alpha Reductase Deficiency. There are a lot of cases, and some have a lot more similarities with the situation of trans-people than others, and some have more in common with non-binary folk than others. But at the very least, enforcing the gender binary is very much at the heart of much of the reasoning that went into the intersex standards of care, doctor's treatment recommendations, parental decisions, and children's self-understandings.

Next, I have a lot of complicated baggage with John Money. In college I idolized the guy, and read a bunch of his stuff, even though it was quite difficult. I admired the way he combined hard medicine, thoughtful gender theory, and practical application in a variety of contexts. Of course, his theories of gender identity development have proven over time to be plausible but tragically, horribly wrong. And his own amazing arrogance seems to have been a big part of the problem. It is tempting to demonize John Money, and make the decades of mistreatment look like his fault. But it is an oversimplification. As Feder points out, several of his key ideas were not as original as they are sometimes made out to be, but rather were codifications of existing practices. Similarly, lots and lots of other doctors read his stuff and bought his arguments. Heck in a lot of ways, John Money's thought screwed me personally, more deeply than I can really comprehend. I went through a phase in college where I serious questioned if I was trans. And I read what I could find in my little college library on it. Which was largely Money and people influenced by him. And his thought convinced me that a) I wasn't a MtF transsexual by current medical standards b) there were no other kinds of trans-people besides transsexuals, or if there were they wouldn't ever be given hormones or surgery and c) non-binary in particular was not a thing, and not a viable way to try to live. It was almost two decades later, before I seriously tried again to figure out what I was gender-wise. What might my life have been like if I hadn't read John Money, and had figured out I was trans in college? On the other hand, John Money's picture of the nature of biological sex seems to be dead on. I used it myself in an earlier blog post here. The Intersex Society of North America (one of Money's biggest opponents) uses his understanding of biological sex in their definition of what intersex is. Sigh. For better or worse, this guy has influenced me in a wide variety of ways.

Commentary/Book Review

Well, this commentary/book review is going to have to be just a part 1, because I'm not through it, and my comments are already probably too long for most readers, so there is always a chance that some of my issues will be addressed later on. Chapter 5 might or might not address one of my big concerns, for example, I can't tell from the introduction.

So, first, as I said earlier, Feder doesn't seem to have enough introduction and background material for many potential readers, which seems like an eminently correctable problem, although I certainly sympathize with the worry that in this case intro and background could bog down into taking over half the book if you weren't careful.

Second I've been really struck by the lack of hardly any mention of transgender people or issues. Feder clearly envisions that her book will be read by, and of interest to: doctors, parents of intersex folks, intersex folks, medical ethicists, professional philosophers, and gender theory/women's studies/professional Feminist folks.  But she doesn't seem to envision trans folk, or non-binary folks who aren't intersex, as one of the audiences that might be interested in her work. There were three solid pages on how the history of thinking about and treatment of homosexuality is similar and different to the intersex case, and several other briefer discussions. There is a discussion of similarities and differences with closed adoption (which is a neat point I'd never seen before). It would be very easy to devote a few pages to compare/contrast work between trans and intersex. Similarly, several of the people discussed in more detail in the text actually transition their gender of public presentation as kids or adults. This is analysed in terms of Merleau-Ponty's theories, but never put into the context of the many other people who make such transitions or how or why or how it impacts their discussions of sense of self.

Most glaringly, I think society as a whole, and trans people in specific, need to be addressed as stakeholders in the ethical deliberations here. Feder is really good about being careful to think about things from the doctors' angle, from the parents', from the kids', even siblings. What were the doctors thinking as they made their recommendations? What motivated them? How were they harmed by what happened? What were the parents thinking? How were they harmed? How were the kids harmed? How were they benefited? What went right despite much going wrong? Feder excels at teasing out questions that aren't just lying on the surface (more on that in a bit). But to my mind, she missed a bunch about society and transfolk. How was society harmed, by having all examples of ambiguous gender people in it systematically altered and hidden, to present the appearance that gender and sex are more binary than they actually are? I think that Jane Schmoo in Kokomo, with no direct connection to intersex people, was harmed, in her own understanding of her own femininity, by being misled into thinking the lines between male and female are vastly less blurry than they actually are. Or consider Marilyn Roxie, a young genderqueer I mentioned the other day who designed the genderqueer flag, and takes they/them.  Imagine them growing up queer in a society with a much steeper gender binary than it should have. Trying to figure out how to make sense of themselves in a country where “he” and “she” are the only options, and any ambiguity must be surgically removed whenever discovered. Could they have used some non-binary role models? Maybe some of the “ambiguous” kids born in the 50s or 60s would have grown into people who embraced their androgyny by the time Marilyn was a teen trying to make sense of their own androgyny. (Indeed, notice that one of the few kids whose parents refused the surgery, DID grow up to be one of the non-binary hero/ines I mentioned last week, Hida Viloria). Maybe society would have been more tolerant of ambiguities in gender, if these hadn't been systematically effaced and hidden for decades. Maybe it would have been easier on Marilyn, growing up, coming out to themself, coming out to others, carving a space to be non-binary and genderqueer in daily life, if people understood, that yes this is a thing that happens, sometimes at birth and sometimes later. And selfish as it is, maybe it would have been easier for me. It's easy to see on the surface of things, that the intersex kids have been harmed, that their parents have been put into terrible positions, that the doctors themselves are not unscathed. But the problem is not JUST a personal matter of many individual cases. Part of the issue, that needs to be addressed is the systematic, programmatic nature of what was done for decades to thousands. These kids were robbed of their genital integrity, that is true and obvious, but we were ALL robbed of their witness to the wholeness of themselves, of the possibility of seeing how non-binaryness can play out in a normal life. As the Senate of Australia said when it looked into the intersex medical recommendations in 2013 “Normalising appearance goes hand in hand with the stigmatisation of difference.” We have ALL been wounded by this stigmatisation, even cis-binary folks, but especially the intersex folks and their families, and trans folks like Marilyn and I, who are trying to live non-binary lives.

Which brings to a related point, I want to emphasize. Every gender theorist needs to think long and hard about the intersex standards of care debacle, via Ellen Feder's book, or in some other way. If we make John Money into too cartoonish of a villain we can miss one of the points that is key for me. John Money's theory of the psychological development of gender identities was not stupid or thoughtless, and it reflected a kind of zeitgeist that was going around at the time. But his theory wasn't questioned hard enough. It wasn't criticized enough. People didn't think about it deeply and carefully enough. And in his and others arrogance, it was often applied as if it was simply fact, despite having remarkably little evidential basis. People wanted to believe it was so, it fit the mood and the cases on hand pretty well, so people didn't poke it too much. And the result was disastrous when it turned out to nonetheless be false. No, people's gender identity cannot be re-written by fiat if we catch them early enough. Gender is not simply in our social treatment of them, or the shape of their genitals, or their hormone structure, or their early childhood development. Take a boy, reshape his genitals, give him female hormones, raise him as a girl and hide his past from him, and do it all while he's an infant. Sometimes you'll get a well-adjusted adult woman - maybe. But, all too often, it turns out, you'll get someone who feels like a boy/man trapped in a girl/woman's body. (How does that not make you want to think about comparisons and contrasts with trans cases, sigh) Who will struggle his whole life with it. Who will feel deeply, unspeakably betrayed when he finds out what was done to him in the name of a theory of gender that had little evidence but that everyone sorta kinda wanted to believe. And that, or something like it, might wind up being the ultimate result of Judith Butler's theory of gender, or Kate Bornstein's, or Julia Serano's, or my own. This story is among other things a warning about what happens when plausible gender theories go badly wrong. It is not enough to be plausible, smart and thoughtful. We have to critique our theories of gender thoroughly, and we have to be humble about our results and the best guesses we wind up making at the end of the day.

OK third a compliment. What Ellen Feder does best is look at questions that you might not have thought to ask at first. She says at one point that she thinks philosophy is more about asking good questions, than it is about giving good answers. A great line, and also clearly her own strong suit. She actually has so many of them that I'm going to look at several chapter by chapter in a bit. But more generally, this is what I've really liked in the book so far. Also, Feder has done an impressive job to striving to keep her own baggage out of the mix, to try hard to look the situation in the face honestly, to gather information and perspectives without pre-deciding the outcomes. She wound up engaging in social research, trying to find people to interview and interveiwing them to get a better feel for their experience of and spin on events. She is not trying to simply make the doctors or John Money into cardboard villains, but to bring some nuance and charity to their perspective. She doesn't want to “let them off the hook” or “defend” them either, she wants to savor the complexities. Similarly with the parents. Years ago, she clearly couldn't tell if the parents were villains for making horrible choices, or tragic figures for being bullied into terrible choices, or victims themselves, or what, and wanted to reach out and hear the parents own understandings. She eventually advances a story in which none of our initial stabs at characterizing the parent's role in the affairs is exactly right, and that's very characteristic of her book.

Fourth, Ellen Feder really wants philosophy to be able to help make sense of what happened. She wants to help after the fact. So she throws a whole bunch of philosophers and philosophical ideas at the many interesting questions, to see what sticks. And the results are pretty hit and miss. But some of it sticks. This gives the text a difficult and academic style - let's apply some Foucault; how does Bordieu's idea of habitus help us here?; notice what happens if we look at this through the lens of Kittay's understanding of dependency work; fourth-order discussions of Butler's take on Merleau-Ponty's take on Malebranch, etc. This isn't going to be the first or last book written on this topic, and I really don't think Feder has the issues sewn up, or thoroughly sussed out yet. It is far better at questions than answers, but even on the answers front, there are lots of these little unsystematic advances and hints and leads and suggestions. She's ON to things, even if she's not really done, and I don't always agree with her. Her approach is still quite piecemeal. It's a credible, decent book, that later folks working on the topic (or Feder herself later on), need to read and think about, and follow up on. I have optimism that eventually a more synthetic, whole-topic way of understanding what happened will emerge, and when it does Feder will be cited a lot, and will seem like one of the steps along the way towards understanding the situation.

Ok, let's look a little more carefully at the first few chapters. The key question that emerges early in the book is “how did the bio-ethicists not catch this long before they did?” And the tentative answer that emerges is - that is just not at all how professional bio-ethics functioned in the US. Feder tells the story of Noam Chomsky (a linguist, by background), speaking at the Western meeting of the American Philosophical Association in 1969. “After giving a stinging attack on the American government for its pursuit of war and for its imperialism, and on the general dominance of a power elite wielding technological mastery that it proclaimed to be 'value-free,' Chomsky challenged the audience of philosophers: 'these are the typical questions of philosophy … philosophers must take the lead in these efforts.' Jonsen [the historian recounting this episode] rightly observes 'only a non-philosopher could believe that such issues had been 'typical questions of philosophy,' at least during its recent history.” Or perhaps, better, during its recent American history. The idea that social critique was one of the jobs of philosophers, and part of being a serious philosopher, was pretty normal in Europe all through the 20th century, and Feder's many Continental thinkers referenced help to reinforce the point. But in the US, its hard to find influential professional philosophers engaged in real social critique after Dewey. It's no accident that, for example, Judith Butler has been in the “Critical Theory” program at the Department of Rhetoric and Comparative Literature, since 1993, rather than being housed in a philosophy department. Professional philosophers are expected to specialize more narrowly, and to publish extensively in specifically philosophical venues, and more general social criticism in the US is largely left to folks in literature or the media, or even to non-professional intellectuals and activists, such as bloggers like me, I suppose. Feder recounts the story of Hannah Arendt being scorned by an APA accreditation committee in the late 70s, as another historian recounts, she was considered “an unproductive drone because her works are not cited in important journals such as the Journal of Philosophy and Philosophical Review. Of course, she published regularly in the New York Review of Books (no obscure venue), had been on the cover of Time magazine, and was one of the most famous political thinkers in the world."  Hannah Arendt (!) was just not up to APA standards.  American professional philosophers just didn't see themselves as being involved in criticizing existing policies or practices, but rather as “assist[ing] in the formation of sound public policy by distinguishing appropriately different kinds of ethical theories and kinds of moral and political obligation” as one of the APA philosopher's replied to Chomsky's 1969 challenge for philosophers to be more engaged in social critique. And this spirit certainly extended into American reflection on professional philosophical bioethics as it emerged from the 60s to the 00s.

The second big, under-examined question, and the bulk of chapter 2, is roughly “Why did the parents choose something for their infants, that they would not have chosen for themselves?” Suzanne Kessler, one of the first humanities scholars to look hard at intersex issues in the 90s, actually did some experiments with college students to gauge people's reactions and opinions. In one study, women were asked to imagine that they had been born with extra-large clitorises, and men to imagine that they had been born with extra-small penises, and asked a bunch of survey questions about how they thought this would effect their lives, and whether they would have wanted their parents to approve of surgery to correct this at birth (or in the men's case reassign them as female at birth and perform infant vaginaplasty). Both men and women, responded that they didn't think having these genitals would have impacted their life much, and that they would not have wanted surgical alteration, especially if there was a risk such surgery would interfere with sexual pleasure as adults. 93-99% agreement, by the way. In a separate experiment, college students were asked to imagine instead that they had a baby who was born with an unusually large clitoris or small penis, and were presented with clitoral reduction, or reassignment as female and vaginaplasty as options. These students strongly, but not overwhelmingly opted for the surgical operations. Their reflections on why, focused on wanting their kids to be normal, and feeling that early surgery would be less traumatic than later surgery. They did not reflect at all on the risk of lost of erotic sensitivity. Lots of evidence show that actual parents of intersex children reflected similarly. Issues of normalcy and minimizing trauma weighed heavily in their minds when deciding at birth.  But issues of erotic sensitivity, identity, and being comfortable with one's own body regardless of variations from the norm, weighed heavily on them when they reflected on their relationship with their grown intersex children, or what they would have wanted, later on. So why the disconnect? It doesn't seem to be ill-will, or selfishness. The parents TRIED to reflect about what would be best for their kids. They just seem to have had this odd disconnect between what they would have wanted for themselves, and what they thought was best for their kids. Feder interviews a bunch of parents, and gathers some info, but doesn't really come to a conclusion. It isn't malice, or selfishness, or straight-forward lack of thought, we can say that. Similarly, the doctors certainly gave the parents partial information, and left out some of the key bits that might have impacted their decision, but that doesn't seem to be the heart of it either. Feder tries to apply Kittay's theory of dependency work, and argues that the dependency worker (in this case the parent), just isn't as “transparent” as we might hope. Our sense of what we “ought” to do, or our need to “do right by” the person who is dependent on us, just partially overwhelms our ability to empathize with them, identify with them, and imagine “what they would want” as contrasted with what feels dutiful for us.

The third big question is why do the doctors seem to care so much about genital shape and size? Especially given that college student respondents claim not to. Especially when some of the doctor's responses seem to indicate “disgust” or “revulsion” for abnormal genitals as part of the story. Here Feder, dives into Nietzsche, and argues that the doctors feel ressentiment, and thus in an odd way envy, for the infant's ambiguous genitalia. Grown cis, white, well off, male surgeons envying micropenises? Erk? Well, Feder takes a while to develop this line, and goes through some pretty dodgy bits of Freud, and interpretations of Nietzsche that I'm not necessarily completely in-line with, but the ultimate upshot guess is not as crazy as it sounds at first. The idea is that everyone – male or female, cis or trans, has to as a child learn to constrain themselves into a social gender role that is never going to be completely comfortable, or fit entirely correctly. Everyone experiences this as a loss to some degree or another. Once you take on the role of your gender as a part of your identity, it is not just a loss, but a sacrifice, a part of yourself that you have done your best to excise to be who you are socially, to fit into the required gendered molds. As Feder puts it “it is not simply that their bodies [the infants with ambiguous genitalia] point to a truth about what gender 'really' is, but also that those with such anatomies cannot do this thing that the rest of us must [fit into the gender binary] and for which we must sacrifice. That is why they are enviable. And that is why their “enjoyment” of ambiguity must be spoiled.” In a sense, it is like hazing. I had to do these things to fit into the gender binary, why should I let you get away with not doing the same or something parallel? I'm not sure I buy it, but I certainly suspect it's onto something. Somehow or another, I suspect the gender binary is both an important cause of this situation, and importantly reinforced by it.

Feder's fourth big question is “is there some form of subtle damage to the self, that intersex infants who are surgically altered suffer from that isn't captured by harms that have been explored so far – trauma, pain, discomfort, sensation loss, the psychosocial harms of secrecy, shame, resentment of parents, etc.” And yes she thinks there is. And she tries to apply Merleau-Ponty's theories of self (and more specifically Judith Butler's take on them), as well as the details of the life of an intersex fellow named Jim, to illustrate them. Again, I'm pretty unimpressed by the applicability of Merleau-Ponty, it's not wrong exactly, but I'm not sure it helps much. And I've read a bunch of different accounts of a pretty similar phenomena among trans people trying to understand or come to terms with who they are. Maybe I just trust regular folks reflecting on their own personal narratives, more than the psychoanalytic approaches of Continentialists trying to “apply” theories to the accounts of others. Jim describes his experience eloquently enough, without needing to bring a Frenchman into the mix to expertsplain him with.  But, again, Feder is definitely onto something here, the harms done at the level of self and self-understanding are deeper and subtler than a lot of the medical research is equipped to detect or make sense of.

Another great question Feder pursues in chapter 4, is how does the treatment of an intersex child impact siblings of the child? The question of impacts on the siblings of a child with disabilities, or chronic medical problems, were actually explored quite a bit in the 90s, and to good effect. But no one seems to have even asked the question with regards to intersex, not even the doctors or parents reflecting on making hard choices. On the other hand, it wasn't hard for Feder to find examples of siblings who had clearly been impacted. Again this is clearly a cool lead for further research and thinking.

OK, that's more than enough for now, I'll try to give a part two in a few weeks

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