WEBVTT

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When I turned 17,

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I went to the doctor because things
weren't developing normally.

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I still hadn't started my period.
I still didn't have boobs.

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I was referred up 
the chain of specialists,

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and we set out to find
what was wrong with me.

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This was the first time,
in a medical setting,

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that I felt like a thing to be fixed.

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The doctors ordered some tests,
and when they got the results back,

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they said, "Well, we didn't expect that!",

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which I think is very next to "oops"

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on the list of things you don't want
to hear in the doctor's office.

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(Laughter)

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A quick biology refresher for you:

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women have two X chromosomes
and men have an X and a Y, right?

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Well, usually.

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The doctors were confused because,
when my chromosome analysis came back,

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I had an X and a Y,

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which is typically associated
with being male.

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I was intersex,
somewhere between the sexes.

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Intersex people have some combination
of both male and female,

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whether that's in their external anatomy,
their internal reproductive organs,

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their hormone levels, or their DNA.

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Intersex also includes people

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who don't have any particular aspect
of the opposite sex,

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but their anatomy just isn't quite typical
for what you would expect.

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Being intersex is not the same
as being transgender.

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Transgender people typically have bodies
that correspond entirely to one sex.

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While it is possible to be
both intersex and transgender,

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the majority of each group
is either one or the other.

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People find out that they're
intersex in a few ways.

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Some people find out -

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well, their parents and their doctors
find out when they're babies,

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and they notice that their anatomy
just isn't quite typical.

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Other people find out during puberty,

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when puberty goes in ways
that they didn't expect,

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or, as in my case, when puberty
just doesn't happen at all.

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So, once we knew "what was wrong with me,"

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it became a thing to be fixed.

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We had our game plan.

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I had streak gonads,
tiny little streaks of tissue

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that would normally have developed
into ovaries in women

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or testes in men, but in me,
never developed into anything.

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Those might be cancerous,

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so I would have to have
surgery to remove them.

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If they were cancerous
and the cancer had spread,

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then I might need more surgery,
and maybe chemo,

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and maybe an oncology team.

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During surgery, we would also evaluate
what female anatomy I had

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and whether it was all hooked up.

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If I had a uterus, we needed to know
that it wasn't often its own little world,

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because hormone replacement therapy
could stimulate a period

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and the blood would have nowhere to go.

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At the end of the day,
a few prognoses were tossed out.

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I would probably never be pregnant.

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I might never have a normal sex life.

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And by the time all
of the diagnostics were done,

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I would be 18.

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Now, I know that starting
puberty was really high

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on everyone's list of things to do
when they turned 18 -

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(Laughter)

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but I'm happy to report
that everything turned out well,

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including my moderately
awkward freshman year of college.

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(Laughter)

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I didn't have cancer,

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I can probably be pregnant
with the help of an egg donor,

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and my sex life is none of your business.

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(Laughter)

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(Cheers) (Applause)

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Our game plan had gone perfectly.

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According to any
medical standard, I was fixed,

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but fixing is different than healing,

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and healing rarely comes with a road map.

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I think it's indicative
of a fixing mentality

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that I was never referred to counseling,

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I was never referred to group counseling,

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and it was never suggested
that I could meet people like me.

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Imagine being told at 17
that you have red hair.

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And you're like, 
"Red hair... what's that?"

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That sounds ridiculous,

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but at 1% to 2% 
of the population worldwide,

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being intersex is about as common
as having red hair.

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In the United States,
it's also about as common as being Jewish.

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So, where are we?

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And how have so many people
never heard of us?

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It still astonishes me that, in several
years of being out as an intersex person,

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I have never met another intersex person
naturally, on the street, in the wild -

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(Laughter)

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Even in the LGBT community,
nobody's ever said,

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"Oh, yeah, me too!",
or "My sister is," "My friend is."

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In our personal,
professional and public lives,

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we are deep underground.

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We've been ashamed of it,
so we don't talk about it.

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So, we become ashamed of it,
and the cycle continues.

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But we can't be invisible anymore.

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We need to be seen and we need you
to know that we exist

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because, otherwise,
the next generation of intersex kids

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is going to grow up just as confused
and ashamed as we did.

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We need people to know

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that, if intersex people are 1%
of every population,

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then there may be five
intersex Fortune 500 CEOs,

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there may be five
intersex members of Congress,

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there may be three
intersex United States astronauts,

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and there may be four intersex kids
in the average US elementary school.

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We need to be seen
and we need everyone's voices

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because the consequences
of us not being seen are dire.

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Across the United States
and around the world,

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intersex babies have been subjected
to what's been called genital mutilation.

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I worry that that term
stigmatizes intersex people,

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but I do think it can base
the gravity of the situation.

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Intersex babies are being subjected
to surgery that is cosmetic

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and medically not necessary,

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and is designed to make their genitals
appear more normal.

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These surgeries carry risks of scarring,

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loss of sensation,
and sexual difficulties later on.

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What's really surprising
is that relatively minor abnormalities

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can bring infants under the knife.

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In a condition called hypospadias,

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a boy's penis has an under opening,
instead of a tip opening.

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The term comes from the Greek
"hypo" for "under,"

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and "spadia" for "opening."

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Instead of being at the tip,

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the urethra is on the
underside of the penis,

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somewhere lower down.

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These boys generally have
a functioning penis,

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so why are they being 
subjected to surgery?

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Well, so that, when they are older,
they can stand while peeing;

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so that their penis doesn't look weird.

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Imagine a set of parents
seeing their new baby and saying,

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"Those ears have got to go."

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The doctors would look at them
like they were nuts,

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but, for some reason, when
the abnormality is in a baby's genitals,

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surgery seems like the only option.

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Hypospadias affects 1 in 200 boys,
which makes it relatively common.

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Even so, we don't have good data
on the number of procedures performed.

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We also don't have good data

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on the success or failure rates
of these surgeries.

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Failure rates seem to range
between 4% and 67%,

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depending on the type
of procedure performed

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and the type of surgeon
performing the surgery.

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That's a huge range.

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I would argue that any risk is too great
when the procedure is purely cosmetic

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and the child is too young to participate
in the decision-making,

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especially because failure
means more surgery.

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Kids have ended up
having 10, 20, 25 surgeries

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to correct what went wrong 
in the first one

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and in subsequent surgeries.

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They've ended up spending spring break
and summer at home, recuperating,

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instead of having fun with their friends.

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And for what?

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I honestly believe
that parents and physicians

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want to do right by these kids.

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It's impossible to know
the particulars of every case,

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but I do know the physics of judgement.

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I know that, when we're treating
other people as things to be fixed,

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we're probably treating
ourselves the same way.

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When we think that we're not good enough,

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we think that other people
aren't good enough,

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and then we start thinking
that other people

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see other people as not good enough.

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And that spirals into worries of people
seeing this child as not good enough,

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wondering if this kid will be teased,

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wondering what will happen
when a baby-sitter changes their diaper,

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wondering what will happen
when a colleague notices

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that this man pees sitting down

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or when a partner sees
this woman's slightly enlarged clitoris

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for the first time.

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These fears are real,

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and I have faced similar ones
in my own life,

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but we are miracles,

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made up of particles smaller
than we can conceive of,

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from stars larger
than we can possibly imagine,

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and we don't have to get caught up

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in the in-between spaces
of inches and pounds.

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We can remember that all of us,
male, female, intersex,

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are not things to be fixed.

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We are people to be loved.

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And if you believe
that you're a person to be loved

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and treat yourself
with kindness and patience,

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then you'll treat
other people the same way.

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And that's what
intersex people really need,

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because decisions about our bodies
are being made by people like you.

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Thank you.

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(Cheers) (Applause)