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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