When I turned 17,
I went to the doctor because things weren't developing normally.
I still hadn't started my period. I still didn't have boobs.
I was referred up the chain of specialists,
and we set out to find what was wrong with me.
This was the first time, in a medical setting,
that I felt like a thing to be fixed.
The doctors ordered some tests, and when they got the results back,
they said, "Well, we didn't expect that!",
which I think is very next to "oops"
on the list of things you don't want to hear in the doctor's office.
(Laughter)
A quick biology refresher for you:
women have two X chromosomes and men have an X and a Y, right?
Well, usually.
The doctors were confused because, when my chromosome analysis came back,
I had an X and a Y,
which is typically associated with being male.
I was intersex, somewhere between the sexes.
Intersex people have some combination of both male and female,
whether that's in their external anatomy, their internal reproductive organs,
their hormone levels, or their DNA.
Intersex also includes people
who don't have any particular aspect of the opposite sex,
but their anatomy just isn't quite typical for what you would expect.
Being intersex is not the same as being transgender.
Transgender people typically have bodies that correspond entirely to one sex.
While it is possible to be both intersex and transgender,
the majority of each group is either one or the other.
People find out that they're intersex in a few ways.
Some people find out -
well, their parents and their doctors find out when they're babies,
and they notice that their anatomy just isn't quite typical.
Other people find out during puberty,
when puberty goes in ways that they didn't expect,
or, as in my case, when puberty just doesn't happen at all.
So, once we knew "what was wrong with me,"
it became a thing to be fixed.
We had our game plan.
I had streak gonads, tiny little streaks of tissue
that would normally have developed into ovaries in women
or testes in men, but in me, never developed into anything.
Those might be cancerous,
so I would have to have surgery to remove them.
If they were cancerous and the cancer had spread,
then I might need more surgery, and maybe chemo,
and maybe an oncology team.
During surgery, we would also evaluate what female anatomy I had
and whether it was all hooked up.
If I had a uterus, we needed to know that it wasn't often its own little world,
because hormone replacement therapy could stimulate a period
and the blood would have nowhere to go.
At the end of the day, a few prognoses were tossed out.
I would probably never be pregnant.
I might never have a normal sex life.
And by the time all of the diagnostics were done,
I would be 18.
Now, I know that starting puberty was really high
on everyone's list of things to do when they turned 18 -
(Laughter)
but I'm happy to report that everything turned out well,
including my moderately awkward freshman year of college.
(Laughter)
I didn't have cancer,
I can probably be pregnant with the help of an egg donor,
and my sex life is none of your business.
(Laughter)
(Cheers) (Applause)
Our game plan had gone perfectly.
According to any medical standard, I was fixed,
but fixing is different than healing,
and healing rarely comes with a road map.
I think it's indicative of a fixing mentality
that I was never referred to counseling,
I was never referred to group counseling,
and it was never suggested that I could meet people like me.
Imagine being told at 17 that you have red hair.
And you're like, "Red hair... what's that?"
That sounds ridiculous,
but at 1% to 2% of the population worldwide,
being intersex is about as common as having red hair.
In the United States, it's also about as common as being Jewish.
So, where are we?
And how have so many people never heard of us?
It still astonishes me that, in several years of being out as an intersex person,
I have never met another intersex person naturally, on the street, in the wild -
(Laughter)
Even in the LGBT community, nobody's ever said,
"Oh, yeah, me too!", or "My sister is," "My friend is."
In our personal, professional and public lives,
we are deep underground.
We've been ashamed of it, so we don't talk about it.
So, we become ashamed of it, and the cycle continues.
But we can't be invisible anymore.
We need to be seen and we need you to know that we exist
because, otherwise, the next generation of intersex kids
is going to grow up just as confused and ashamed as we did.
We need people to know
that, if intersex people are 1% of every population,
then there may be five intersex Fortune 500 CEOs,
there may be five intersex members of Congress,
there may be three intersex United States astronauts,
and there may be four intersex kids in the average US elementary school.
We need to be seen and we need everyone's voices
because the consequences of us not being seen are dire.
Across the United States and around the world,
intersex babies have been subjected to what's been called genital mutilation.
I worry that that term stigmatizes intersex people,
but I do think it can base the gravity of the situation.
Intersex babies are being subjected to surgery that is cosmetic
and medically not necessary,
and is designed to make their genitals appear more normal.
These surgeries carry risks of scarring,
loss of sensation, and sexual difficulties later on.
What's really surprising is that relatively minor abnormalities
can bring infants under the knife.
In a condition called hypospadias,
a boy's penis has an under opening, instead of a tip opening.
The term comes from the Greek "hypo" for "under,"
and "spadia" for "opening."
Instead of being at the tip,
the urethra is on the underside of the penis,
somewhere lower down.
These boys generally have a functioning penis,
so why are they being subjected to surgery?
Well, so that, when they are older, they can stand while peeing;
so that their penis doesn't look weird.
Imagine a set of parents seeing their new baby and saying,
"Those ears have got to go."
The doctors would look at them like they were nuts,
but, for some reason, when the abnormality is in a baby's genitals,
surgery seems like the only option.
Hypospadias affects 1 in 200 boys, which makes it relatively common.
Even so, we don't have good data on the number of procedures performed.
We also don't have good data
on the success or failure rates of these surgeries.
Failure rates seem to range between 4% and 67%,
depending on the type of procedure performed
and the type of surgeon performing the surgery.
That's a huge range.
I would argue that any risk is too great when the procedure is purely cosmetic
and the child is too young to participate in the decision-making,
especially because failure means more surgery.
Kids have ended up having 10, 20, 25 surgeries
to correct what went wrong in the first one
and in subsequent surgeries.
They've ended up spending spring break and summer at home, recuperating,
instead of having fun with their friends.
And for what?
I honestly believe that parents and physicians
want to do right by these kids.
It's impossible to know the particulars of every case,
but I do know the physics of judgement.
I know that, when we're treating other people as things to be fixed,
we're probably treating ourselves the same way.
When we think that we're not good enough,
we think that other people aren't good enough,
and then we start thinking that other people
see other people as not good enough.
And that spirals into worries of people seeing this child as not good enough,
wondering if this kid will be teased,
wondering what will happen when a baby-sitter changes their diaper,
wondering what will happen when a colleague notices
that this man pees sitting down
or when a partner sees this woman's slightly enlarged clitoris
for the first time.
These fears are real,
and I have faced similar ones in my own life,
but we are miracles,
made up of particles smaller than we can conceive of,
from stars larger than we can possibly imagine,
and we don't have to get caught up
in the in-between spaces of inches and pounds.
We can remember that all of us, male, female, intersex,
are not things to be fixed.
We are people to be loved.
And if you believe that you're a person to be loved
and treat yourself with kindness and patience,
then you'll treat other people the same way.
And that's what intersex people really need,
because decisions about our bodies are being made by people like you.
Thank you.
(Cheers) (Applause)