(gentle music)
- [Elsa] I've always come into rooms with a force
and I've always been the kind of person
who doesn't take no for an answer
if there's an injustice to be dealt with.
I think a lot of people hear the word DeafBlind
and they assume that I'm going to be quiet.
And I am loud, I am snarky, I'm sarcastic, I talk a lot.
Those are things that I think surprise people.
I am Dame Elsa of The Order of the Bat.
I am a knight errant against ableism.
I wear vintage dresses
and I deal with the problems as they come.
I am a DeafBlind speculative fiction writer,
a memoirist, a fencer, a swing dancer, a hiker.
There's a misconception that people have that blind people
aren't body conscious or aware of where they are in space.
There's the concept called deaf gain.
And it's the idea that Deaf people don't just have a loss.
There's also a gain to being deaf because you have
that laser sharp focus.
There are no two DeafBlind people that are exactly alike.
The spectrum is so vast that I can't even really explain it.
I remember my coach looking at me as I took out
my hearing aid and put my glasses down and I looked
at him and he was like, you realize you're better
than everybody else on this team right now.
I had the ability to just focus on being
in the water and swimming.
I ski better downhill without my hearing aids in
because I stop processing the world through my ears
and I process the world through my feet.
When I'm fencing, I process through my sword.
I don't necessarily process through my eyes.
I only need one touch point,
whether it's my cane on the ground, even for an instant
or my sword in the air connecting with yours.
And from that point, I can basically model my whole world
off of that body awareness.
I'm pretty sure they're going to try and take advantage
of my blindside.
So I move my arm out, block with a parry.
And what I know is that their sword just connected
really hard with my sword.
Nine years old, I was going
to a French camp in the San Juan islands.
I remember getting to pick up the sword for the first time
and I remember that it was a cool summer breeze,
and that I could see the pine trees and the sun,
and I could smell the ocean.
And I got to fence.
I got to be a knight.
Nobody had ever told me I couldn't,
but also nobody had ever told me that I could.
It was a complex upbringing.
My parents were told that they should put me
in an institution and have another baby
after I was born by my pediatrician.
And I heard that story.
I remember sort of thinking about how awful that seemed.
My parents responded to the concept of institutionalizing me
with a no, because they really wanted a kid.
And I don't think that they had planned to have another one.
So I have a lot of empathy for my parents,
but I also feel like there was a certain degree
of hiding my disability that happened.
When you're being raised by queer parents
who were living with the reality of the AIDS crisis.
My father had AIDS.
I think he knew that he had an illness he was disabled by.
There were a lot of things to hide
because society told us to.
My father taught me how to be an advocate
for disabled people and queer people everywhere.
I've been writing about the topic
of disability, representation, and media for 10 years.
And at a certain point you have enough material
that you need to write a book
because you've written too many essays.
I woke up one morning
and there was an email from Marvel in my inbox.
Here's an email that says,
"Want to write for Marvel, the women anthology?"
And I said, yes, because that's what you do
when you're a comic book nerd
and an email from Marvel lands in your inbox.
This is Women of Marvel number one
which I was lucky enough to be a part of.
And I got to write Peggy Carter, which was pretty cool.
They made a disabled woman look competent and awesome.
And they didn't for one second, make her disability
about fetishization.
And I felt like the artist really got what I was asking for.
I went to the comic bookstore to buy my own copy.
And I walked in and I was like,
"Do you have Women of Marvel Number One?"
And they were like, "Yes, we do."
And I picked it up and I was like, "Yeah so I wrote this,"
and the comic book nerds were very excited.
And then there's Disabled People Destroy Science Fiction
which I co-edited with Dominik Parisien.
And this won the Hugo Award in 2019.
I'm working on a novel that is about what happens when
in the future we have companies that own biotech.
And so it's about the disabled hackers who are trying to
stop the erasure of disability from the future world.
It's important to me to work in the genre because
I want there to be disabled people in the future.
I want us to imagine disabled people in the future.
I want to be in the future.
When I was much younger, there was a picture book
about Helen Keller that we read in my elementary school.
And then we watched "The Miracle Worker"
when I was in high school.
When I was a kid the representation that I got
was she learned how to speak by standing next to
a water pump by her teacher.
And that was kind of it.
And if you are a DeafBlind kid who is oral,
who speaks a mile a minute,
you're not going to resonate with that.
We only ever hear the story
up until she signs water at the water pump.
And then we forget that she was also a Socialist,
that she performed on Vaudeville circuits.
Like this was a completely different person,
but we choose as a society not to look at her as an adult.
There is a burning fire in my chest every single day.
And it has been there since I was a little girl.
And I think that that rage comes from existing
in a world that wants to define me constantly based
on their own decisions of who I should be.
Sometimes I'll be on Twitter minding my business
and somebody will roll along and say
you're using a sighted Twitter client,
you're not really blind.
And then I will get really angry
because nobody gets to tell me who I am.
Perspectives of disabled people need to be seen.
Being seen is important
and being a part of society is important.
I hope people don't forget that.
They don't need a degree in disability studies.
They don't need to be disabled.
They just need to be willing to listen.
Every single piece of work I do is
about forcing my way through the door.
(gentle music)