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TEDxNorthwesternU

Alice Dreger: Is anatomy destiny?

December 15, 2010

Alice Dreger works with people at the edge of anatomy, such as conjoined twins and intersexed people. In her observation, it's often a fuzzy line between male and female, among other anatomical distinctions. Which brings up a huge question: Why do we let our anatomy determine our fate? (Filmed at TEDxNorthwesternU.)

Alice Dreger - Historian
Alice Dreger studies history and anatomy, and acts as a patient advocate. Full bio

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I want you to imagine two couples
00:15
in the middle of 1979
00:18
on the exact same day, at the exact same moment,
00:20
each conceiving a baby -- okay?
00:23
So two couples each conceiving one baby.
00:25
Now I don't want you to spend too much time imagining the conception,
00:27
because if you spend all that time imagining that conception,
00:30
you're not going to listen to me.
00:32
So just imagine that for a moment.
00:34
And in this scenario,
00:36
I want to imagine that, in one case,
00:38
the sperm is carrying a Y chromosome,
00:40
meeting that X chromosome of the egg.
00:42
And in the other case,
00:44
the sperm is carrying an X chromosome,
00:46
meeting the X chromosome of the egg.
00:48
Both are viable; both take off.
00:50
We'll come back to these people later.
00:52
So I wear two hats
00:54
in most of what I do.
00:56
As the one hat,
00:58
I do history of anatomy.
01:00
I'm a historian by training,
01:02
and what I study in that case
01:04
is the way that people have dealt with anatomy --
01:06
meaning human bodies, animal bodies --
01:09
how they dealt with bodily fluids, concepts of bodies;
01:11
how have they thought about bodies.
01:14
The other hat that I've worn in my work
01:16
is as an activist,
01:18
as a patient advocate --
01:20
or, as I sometimes say, as an impatient advocate --
01:22
for people who are patients of doctors.
01:25
In that case, what I've worked with
01:27
is people who have body types
01:29
that challenge social norms.
01:31
So some of what I've worked on, for example,
01:33
is people who are conjoined twins --
01:35
two people within one body.
01:37
Some of what I've worked on is people who have dwarfism --
01:39
so people who are much shorter than typical.
01:41
And a lot of what I've worked on
01:44
is people who have atypical sex --
01:46
so people who don't have the standard male
01:48
or the standard female body types.
01:50
And as a general term, we can use the term intersex for this.
01:52
Intersex comes in a lot of different forms.
01:56
I'll just give you a few examples
01:58
of the types of ways you can have sex
02:00
that isn't standard for male or female.
02:02
So in one instance,
02:04
you can have somebody who has an XY chromosomal basis,
02:06
and that SRY gene on the Y chromosome
02:09
tells the proto-gonads, which we all have in the fetal life,
02:12
to become testes.
02:14
And so in the fetal life the testes are pumping out testosterone.
02:16
But because this individual lacks receptors
02:19
to hear that testosterone,
02:22
the body doesn't react to the testosterone.
02:24
And this is a syndrome called androgen insensitivity syndrome.
02:26
So lots of levels of testosterone, but no reaction to it.
02:30
As a consequence, the body develops
02:33
more along the female typical path.
02:35
When the child is born, she looks like a girl.
02:37
She is a girl. She is raised as a girl.
02:39
And it's often not until she hits puberty
02:42
and she's growing and developing breasts,
02:44
but she's not getting her period,
02:46
that somebody figures out something's up here.
02:48
And they do some tests and figure out
02:50
that, instead of having ovaries inside and a uterus,
02:52
she actually has testes inside, and she has a Y chromosome.
02:54
Now what's important to understand
02:57
is you may think of this person as really being male,
02:59
but they're really not.
03:01
Females, like males,
03:03
have in our bodies something called the adrenal glands.
03:05
They're in the back of our body.
03:07
And the adrenal glands make androgens,
03:09
which are a masculinizing hormone.
03:11
Most females like me -- I believe myself to be a typical female --
03:13
I don't actually know my chromosomal make-up
03:15
but I think I'm probably typical --
03:17
most females like me are actually androgen-sensitive.
03:19
We're making androgen, and we're responding to androgens.
03:22
The consequence is that somebody like me
03:25
has actually had a brain exposed to more androgens
03:27
than the woman born with testes
03:30
who has androgen insensitivity syndrome.
03:32
So sex is really complicated; it's not just that intersex people
03:34
are in the middle of all the sex spectrum --
03:36
in some ways, they can be all over the place.
03:38
Another example:
03:40
a few years ago I got a call from a man who was 19 years old,
03:42
who was born a boy, raised a boy,
03:45
had a girlfriend, had sex with his girlfriend,
03:47
had a life as a guy
03:50
and had just found out that he had ovaries and a uterus inside.
03:52
What he had was an extreme form
03:55
of a condition called congenital adrenal hyperplasia.
03:57
He had XX chromosomes,
03:59
and in the womb,
04:01
his adrenal glands were in such high gear
04:03
that it created, essentially, a masculine hormonal environment.
04:05
And as a consequence, his genitals were masculinzed,
04:09
his brain was subject
04:11
to the more typical masculine component of hormones.
04:13
And he was born looking like a boy -- nobody suspected anything.
04:15
And it was only when he had reached the age of 19
04:18
that he began to have enough medical problems
04:21
actually from menstruating internally,
04:23
that doctors figured out that, in fact, he was female internally.
04:25
Okay, so just one more quick example
04:28
of a way you can have intersex.
04:30
Some people who have XX chromosomes
04:32
develop what are called ovotestis,
04:34
which is when you have ovarian tissue
04:36
with testicular tissue wrapped around it.
04:38
And we're not exactly sure why that happens.
04:40
So sex can come in lots of different varieties.
04:42
The reason
04:45
that children with these kinds of bodies --
04:47
whether it's dwarfism, or it's conjoined twinning,
04:49
or it's an intersex type --
04:52
are often normalized by surgeons
04:54
is not because it actually leaves them better off
04:56
in terms of physical health.
04:58
In many cases, people are actually perfectly healthy.
05:00
The reason they're often subject to various kinds of surgeries
05:03
is because they threaten our social categories.
05:06
Or system has been based typically on the idea
05:09
that a particular kind of anatomy comes with a particular identity.
05:12
So we have the concept that what it means to be a woman
05:15
is to have a female identity;
05:17
what it means to be a black person is, allegedly,
05:19
is to have an African anatomy
05:21
in terms of your history.
05:24
And so we have this terribly simplistic idea.
05:26
And when we're faced with a body
05:29
that actually presents us something quite different,
05:31
it startles us in terms of those categorizations.
05:34
So we have a lot of very romantic ideas in our culture
05:37
about individualism.
05:39
And our nation's really founded on a very romantic concept of individualism.
05:41
Well you can imagine how startling then it is
05:44
when you have children that are born
05:47
who are two people inside of one body.
05:49
Where I ran into the most heat from this most recently
05:51
was last year the South African runner, Caster Semenya,
05:55
had her sex called into question at the International Games in Berlin.
05:58
I had a lot of journalists calling me, asking me,
06:01
"Which is the test they're going to run
06:04
that will tell us whether or not
06:06
Caster Semenya is male or female?"
06:08
And I had to explain to the journalists there isn't such a test.
06:10
In fact, we now know
06:13
that sex is complicated enough
06:15
that we have to admit
06:17
nature doesn't draw the line for us between male and female,
06:19
or between male and intersex and female and intersex;
06:22
we actually draw that line on nature.
06:25
So what we have is a sort of situation
06:28
where the farther our science goes,
06:30
the more we have to admit to ourselves
06:32
that these categories
06:34
that we thought of as stable anatomical categories
06:36
that mapped very simply
06:38
to stable identity categories
06:40
are a lot more fuzzy than we thought.
06:42
And it's not just in terms of sex.
06:44
It's also in terms of race,
06:46
which turns out to be vastly more complicated
06:48
than our terminology has allowed.
06:50
As we look, we get into all sorts of uncomfortable areas.
06:52
We look, for example, about the fact
06:55
that we share at least 95 percent of our DNA
06:57
with chimpanzees.
06:59
What are we to make of the fact
07:01
that we differ from them only really by a few nucleotides?
07:03
And as we get farther and farther with our science,
07:06
we get more and more into a discomforted zone
07:09
where we have to acknowledge
07:11
that the simplistic categories we've had
07:13
are probably overly simplistic.
07:15
So we're seeing this
07:17
in all sorts of places in human life.
07:19
One of the places we're seeing it, for example,
07:21
in our culture today, in the United States today,
07:23
is battles over the beginning of life and the end of life.
07:25
We have difficult conversations
07:28
about at what point we decide a body becomes a human,
07:30
such that it has a different right than a fetal life.
07:33
We have very difficult conversations nowadays --
07:36
probably not out in the open as much as within medicine --
07:38
about the question of when somebody's dead.
07:41
In the past, our ancestors never had to struggle so much
07:43
with this question of when somebody was dead.
07:45
At most, they'd stick a feather on somebody's nose,
07:47
and if it twitched, they didn't bury them yet.
07:49
If it stopped twitching, you bury them.
07:51
But today, we have a situation
07:54
where we want to take vital organs out of beings
07:56
and give them to other beings.
07:58
And as a consequence,
08:00
we're stuck with having to struggle with this really difficult question
08:02
about who's dead,
08:04
and this leads us to a really difficult situation
08:06
where we don't have such simple categories as we've had before.
08:08
Now you might think that all this breaking-down of categories
08:11
would make somebody like me really happy.
08:14
I'm a political progressive, I defend people with unusual bodies,
08:16
but I have to admit to you that it makes me nervous.
08:19
Understanding that these categories
08:21
are really much more unstable than we thought makes me tense.
08:23
And it makes me tense
08:26
from the point of view of thinking about democracy.
08:28
So in order to tell you about that tension,
08:30
I have to first admit to you that I'm a huge fan of the Founding Fathers.
08:32
I know they were racists, I know they were sexist,
08:35
but they were great.
08:37
I mean, they were so brave and so bold
08:39
and so radical in what they did
08:42
that I find myself watching that cheesy musical "1776" every few years,
08:45
and it's not because of the music, which is totally forgettable.
08:48
It's because of what happened in 1776
08:51
with the Founding Fathers.
08:53
The Founding Fathers were, for my point of view,
08:55
the original anatomical activists,
08:57
and this is why.
08:59
What they rejected was an anatomical concept
09:01
and replaced it with another one
09:04
that was radical and beautiful and held us for 200 years.
09:06
So as you all recall,
09:09
what our Founding Fathers were rejecting was a concept of monarchy,
09:11
and the monarchy was basically based
09:14
on a very simplistic concept of anatomy.
09:16
The monarchs of the old world
09:18
didn't have a concept of DNA,
09:20
but they did have a concept of birthright.
09:22
They had a concept of blue blood.
09:24
They had the idea that the people who would be in political power
09:26
should be in political power
09:29
because of the blood being passed down
09:31
from grandfather to father to son and so forth.
09:33
The Founding Fathers rejected that idea,
09:36
and they replaced it with a new anatomical concept,
09:38
and that concept
09:41
was all men are created equal.
09:43
They leveled that playing field
09:45
and decided the anatomy that mattered
09:47
was the commonality of anatomy,
09:49
not the difference in anatomy,
09:51
and that was a really radical thing to do.
09:53
Now they were doing it in part
09:56
because they were part of an Enlightenment system
09:58
where two things were growing up together.
10:00
And that was democracy growing up,
10:02
but it was also science growing up at the same time.
10:04
And it's really clear, if you look at the history of the Founding Fathers,
10:07
a lot of them were very interested in science,
10:09
and they were interested in a concept
10:11
of a naturalistic world.
10:13
They were moving away from supernatural explanations,
10:15
and they were rejecting things like a supernatural concept of power,
10:18
where it transmitted
10:21
because of a very vague concept of birthright.
10:23
They were moving towards a naturalistic concept.
10:26
And if you look, for example, in the Declaration of Independence,
10:28
they talk about nature and nature's God.
10:31
They don't talk about God and God's nature.
10:34
They're talking about the power of nature
10:36
to tell us who we are.
10:38
So as part of that,
10:40
they were coming to us with a concept
10:42
that was about anatomical commonality.
10:44
And in doing so, they were really setting up in a beautiful way
10:46
the Civil Rights movement of the future.
10:49
They didn't think of it that way, but they did it for us, and it was great.
10:51
So what happened years afterward?
10:54
What happened was women, for example,
10:56
who wanted the right to vote,
10:58
took the Founding Fathers' concept
11:00
of anatomical commonality being more important
11:02
than anatomical difference
11:04
and said, "The fact that we have a uterus and ovaries
11:06
is not significant enough in terms of a difference
11:08
to mean that we shouldn't have the right to vote,
11:11
the right to full citizenship,
11:13
the right to own property, etc., etc."
11:15
And women successfully argued that.
11:17
Next came the successful Civil Rights movement,
11:19
where we found people like Sojourner Truth
11:22
talking about, "Ain't I a woman?"
11:24
We find men
11:26
on the marching lines of the Civil Rights movement
11:28
saying, "I am a man."
11:30
Again, people of color
11:32
appealing to a commonality of anatomy over a difference of anatomy,
11:34
again, successfully.
11:36
We see the same thing with the disability rights movement.
11:38
The problem is, of course,
11:42
that, as we begin to look at all that commonality,
11:44
we have to begin to question
11:46
why we maintain certain divisions.
11:48
Now mind you, I want to maintain some divisions,
11:50
anatomically, in our culture.
11:52
For example, I don't want
11:54
to give a fish the same rights as a human.
11:56
I don't want to say we give up entirely on anatomy.
11:58
I don't want to say five-year-olds
12:00
should be allowed to consent to sex or consent to marry.
12:02
So there are some anatomical divisions
12:05
that make sense to me and that I think we should retain.
12:07
But the challenge is trying to figure out which ones they are
12:10
and why do we retain them and do they have meaning.
12:13
So let's go back to those two beings
12:16
conceived at the beginning of this talk.
12:18
We have two beings, both conceived
12:20
in the middle of 1979 on the exact same day.
12:22
Let's imagine one of them, Mary,
12:25
is born three months prematurely,
12:27
so she's born on June 1, 1980.
12:29
Henry, by contrast, is born at term,
12:31
so he's born on March 1, 1980.
12:33
Simply by virtue of the fact
12:36
that Mary was born prematurely three months,
12:38
she comes into all sorts of rights
12:40
three months earlier than Henry does --
12:42
the right to consent to sex,
12:45
the right to vote, the right to drink.
12:47
Henry has to wait for all of that,
12:49
not because he's actually any different in age, biologically,
12:51
except in terms of when he was born.
12:54
We find other kinds of weirdness in terms of what their rights are.
12:56
Henry, by virtue of being assumed to be male --
12:59
although I haven't told you that he's the XY one --
13:02
by virtue of being assumed to be male
13:04
is now liable to be drafted,
13:07
which Mary does not need to worry about.
13:09
Mary, meanwhile, cannot in all the states
13:11
have the same right that Henry has in all the states,
13:13
namely, the right to marry.
13:15
Henry can marry in every state a woman,
13:17
but Mary can only marry today in a few states a woman.
13:20
So we have these anatomical categories that persist
13:24
that are in many ways problematic and questionable.
13:27
And the question to me becomes:
13:30
What do we do,
13:32
as our science gets to be so good
13:34
in looking at anatomy,
13:36
that we reach the point where we have to admit
13:38
that a democracy that's been based on anatomy
13:41
might start falling apart?
13:44
I don't want to give up the science,
13:46
but at the same time it kind of feels sometimes
13:48
like the science is coming out from under us.
13:50
So where do we go?
13:52
It seems like what happens in our culture
13:54
is a sort of pragmatic attitude:
13:56
"Well, we have to draw the line somewhere,
13:58
so we will draw the line somewhere."
14:00
But a lot of people get stuck in a very strange position.
14:02
So for example,
14:04
Texas has at one point decided
14:06
that what it means to marry a man
14:08
is to mean that you don't have a Y chromosome,
14:10
and what it means to marry a woman means you do have a Y chromosome.
14:12
Now in practice they don't actually test people for their chromosomes.
14:14
But this is also very bizarre,
14:17
because of the story I told you at the beginning
14:19
about androgen insensitivity syndrome.
14:21
If we look at one of the founding fathers of modern democracy,
14:23
Dr. Martin Luther King,
14:26
he offers us something of a solution in his "I have a dream" speech.
14:28
He says we should judge people "based not on the color of their skin,
14:31
but on the content of their character,"
14:34
moving beyond anatomy.
14:36
And I want to say, "Yeah, that sounds like a really good idea."
14:38
But in practice, how do you do it?
14:41
How do you judge people based on the content of character?
14:43
I also want to point out
14:46
that I'm not sure that is how we should distribute rights in terms of humans,
14:48
because, I have to admit, that there are some golden retrievers I know
14:51
that are probably more deserving of social services
14:54
than some humans I know.
14:56
I also want to say there are probably also some yellow Labradors that I know
14:58
that are more capable of informed, intelligent, mature decisions
15:01
about sexual relations than some 40-year-olds that I know.
15:04
So how do we operationalize
15:07
the question of content of character?
15:10
It turns out to be really difficult.
15:12
And part of me also wonders,
15:14
what if content of character
15:16
turns out to be something that's scannable in the future --
15:18
able to be seen with an fMRI?
15:21
Do we really want to go there?
15:23
I'm not sure where we go.
15:25
What I do know is that it seems to be really important
15:27
to think about the idea of the United States being in the lead
15:29
of thinking about this issue of democracy.
15:32
We've done a really good job struggling with democracy,
15:34
and I think we would do a good job in the future.
15:37
We don't have a situation that Iran has, for example,
15:39
where a man who's sexually attracted to other men
15:42
is liable to be murdered,
15:44
unless he's willing to submit to a sex change,
15:46
in which case he's allowed to live.
15:48
We don't have that kind of situation.
15:50
I'm glad to say we don't have the kind of situation with --
15:52
a surgeon I talked to a few years ago
15:55
who had brought over a set of conjoined twins
15:57
in order to separate them, partly to make a name for himself.
16:00
But when I was on the phone with him,
16:02
asking why he was going to do this surgery --
16:04
this was a very high-risk surgery --
16:06
his answer was that, in this other nation,
16:08
these children were going to be treated very badly, and so he had to do this.
16:10
My response to him was, "Well, have you considered political asylum
16:13
instead of a separation surgery?"
16:16
The United States has offered tremendous possibility
16:19
for allowing people to be the way they are,
16:21
without having them have to be changed for the sake of the state.
16:24
So I think we have to be in the lead.
16:27
Well, just to close, I want to suggest to you
16:29
that I've been talking a lot about the fathers.
16:32
And I want to think about the possibilities
16:34
of what democracy might look like, or might have looked like,
16:37
if we had more involved the mothers.
16:39
And I want to say something a little bit radical for a feminist,
16:42
and that is that I think that there may be
16:45
different kinds of insights
16:47
that can come from different kinds of anatomies,
16:49
particularly when we have people thinking in groups.
16:51
Now for years, because I've been interested in intersex,
16:54
I've also been interested in sex difference research.
16:56
And one of the things that I've been really interested in
16:58
is looking at the differences between males and females
17:00
in terms of the way they think and operate in the world.
17:03
And what we know from cross-cultural studies
17:06
is that females, on average --
17:09
not everyone, but on average --
17:11
are more inclined to be very attentive
17:13
to complex social relations
17:15
and to taking care of people
17:17
who are basically vulnerable within the group.
17:19
And so if we think about that,
17:22
we have an interesting situation on our hands.
17:24
Years ago, when I was in graduate school,
17:26
one of my graduate advisers who knew I was interested in feminism --
17:28
I considered myself a feminist, as I still do --
17:30
asked a really strange question.
17:33
He said, "Tell me what's feminine about feminism."
17:35
And I thought, "Well that's the dumbest question I've ever heard.
17:38
Feminism is all about undoing stereotypes about gender,
17:40
so there's nothing feminine about feminism."
17:43
But the more I thought about his question,
17:46
the more I thought there might be something feminine about feminism.
17:48
That is to say, there might be something, on average,
17:51
different about female brains from male brains
17:54
that makes us more attentive
17:57
to deeply complex social relationships
17:59
and more attentive to taking care of the vulnerable.
18:02
So whereas the fathers were extremely attentive
18:05
to figuring out how to protect individuals from the state,
18:08
it's possible that if we injected more mothers
18:11
into this concept,
18:13
what we would have is more of a concept
18:15
of, not just how to protect,
18:17
but how to care for each other.
18:19
And maybe that's where we need to go in the future,
18:21
when we take democracy beyond anatomy,
18:24
is to think less about the individual body,
18:26
in terms of the identity,
18:28
and think more about those relationships.
18:30
So that as we the people try to create a more perfect union,
18:32
we're thinking about what we do for each other.
18:35
Thank you.
18:38
(Applause)
18:40

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Alice Dreger - Historian
Alice Dreger studies history and anatomy, and acts as a patient advocate.

Why you should listen

Alice Dreger is a professor of clinical medical humanities and bioethics at the Feinberg School of Medicine of Northwestern University in Chicago. She describes her focus as "social justice work in medicine and science" through research, writing, speaking and advocacy.

She's written several books that study subjects on the edge of norm-challenging bodies, including One of Us: Conjoined Twins and the Future of Normal and Hermaphrodites and the Medical Invention of Sex and Intersex in the Age of Ethics.

She says: "The question that has motivated many of my projects is this: Why not change minds instead of bodies?"

JOIN OUR LIVE Q&A with Alice Dreger on June 28, 1pm Eastern, in TED Conversations.

The original video is available on TED.com
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