Intersex people and the physics of judgment | Cecelia McDonald | TEDxBoulder

What is intersex? Is it the same as being transgender? And how are intersex people treated around the world? One to two percent of the population is intersex, but few can name a personal friend who is open about this identity.

There is a tremendous amount of shame around being intersex, as shown by the very few intersex people who have "come out." The discussion on what it's like to be diagnosed, what it's like to date and tell people about being intersex, and some ways to own your medical care and make sure that you get the help you need is important. One to two percent of the US population is intersex. Yet, few can name a personal friend that is open about this identity. Cecelia is the CEO of Bird Meets Bee, helping people find egg donors, sperm donors, and surrogates. Entrepreneur, songwriter, traveler, and intersex advocate.

This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at http://ted.com/tedx

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.

Hypospadia 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 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
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)