Welcome to the Washington Talking Book and Braille Library.
We are delighted to be hosting this wonderful evening
with our local author, Elsa Sjunneson.
My name is Danielle Miller and I'm the director here at the library.
Just a couple quick housekeeping items.
This is our first time hosting a truly hybrid event,
so we hope everything goes smoothly.
And hello to our guests on Zoom.
If we have any technical issues,
thank you for your grace as we resolve them.
But I know it'll be a great evening no matter what.
And for our guests on Zoom, we do have captioning
and there is ASL interpretation available for you in the webinar
and also for our Zoom audience members for questions.
Please use the Q and A and if you have any technical issues,
please use the chat to reach the hosts.
And again, welcome.
Just a little bit about the talking book and Braille library.
We are a state wide library service for anyone unable to read standard
print due to blindness, visual impairment, deafblindness,
a physical disability that makes holding a book
or turning the page difficult or a reading disability.
We are a program of the Washington State Library and a regional library of
the National Library Service for the Blind and Disabled Library of Congress.
We are so happy to be partnering with the Washington Center for the Book
to put on this Washington State Book Award event.
The Washington State Book
Awards are a partnership of the Washington Center for the Book
and affiliate of the Library of Congress Center for the Book, administered
by the Washington State Library and the Seattle Public Library.
The Washington Center for the Book promotes
literacy and a love of books, reading and libraries.
They celebrate Washington's robust literary heritage
and shine a spotlight on the contribution of reading in libraries,
in strengthening communities and fostering civic engagement.
Tonight, our speaker is Elsa Sjunneson.
Elsa is a Washington State Book Award winner for
‘Being Seen: One Deafblind Woman's Fight to End Ableism.’
She's also a Hugo Aurora and British Fantasy Award winner.
Elsa writes, and edits speculative
fiction and nonfiction.
She has also
written... I lost my place,
She's also been a finalist for The Best Fan Writer Hugo Awards
and a winner of the D. Franklin Defying Doomsday Award
and a finalist for the Best Game Writing Nebula Award.
She has done much work as an editor, including co-guest editor
in chief of Disabled People Destroy Science Fiction.
Elsa is also a disability rights activist and has worked with New Jersey
11 for Change and the New York Disability Pride Parade.
We are so excited to have Elsa with us tonight,
so please help me welcome her and Elsa, please.
Thank you all.
Thank you so much for having me tonight.
It was an honor to win the Washington State Book Award for memoir
and biography for a book that is about being deafblind.
It's really rare that our voices get heard
because so often our voices are coming from our hands
or they're coming from our bodies or they're coming from the written word.
And so it meant a lot to me to be able to speak
on behalf of a community that I'm a part of,
and that that voice was appreciated
by the non-disabled community as much as by my own community.
That's a rare thing.
The book came about because
I had the opportunity to write one.
I know that sounds funny, but it's true.
I had written ten years worth of essays about why books and movies
and TV shows were getting it wrong about deaf and blind characters.
And I gotten tired.
I'd gotten tired of seeing Mr. Magoo run into plate glass walls.
I gotten tired of seeing blind people
do bad things to children on accident or on purpose.
I had gotten tired of seeing characters who were deaf,
who have no nuance to their deafness.
And so I started writing. That's what I do.
That's what I have done since I was tiny human child. And
I wrote and I wrote and I wrote.
And then all of a sudden there was about 350 pages worth of things
I wanted to say to people.
And that's the point
at which you have to write a book or you have to stop talking about.
So I wrote a book and
that book became a talking point.
Over the last two years, I've given talks to different audiences,
and I think this is the first time that I've had the privilege
to be in a room with fellow deafblind people.
And I'm really grateful for that opportunity
because instead of talking
to people who have no idea what my life is like,
I'm actually talking to people who have a very good idea of what my life is like.
Our varieties of deafblindness
may be different.
They may be more severe or less severe, or they may be one
version of the spectrum or another.
But the embodied experience of deafblindness is a unique one,
and it's one that is unique to our community.
And I am really privileged
to be able to speak to fellow deafblind people tonight.
That's a big deal to me,
and I would not have gotten to do that if it were not for winning this award.
So that is probably what I want
is getting to connect with my own community
tonight.
I'm going to read a couple of segments.
The first one being
from Chapter 15, which is the one that keeps getting assigned at universities.
I'm curious as to why.
Because it's the one about self-identification as a disabled person,
we have always thrived in the castle defying ableism to become yourself.
Yeah.
- Yeah just after maybe sentence or so
- a pause?
- Just breathe every once in a while.
- Sure
Every disabled person has an origin story.
Mine is that were it not for a bunch of Wall Street jerks
who refused to get vaccinated, I would be non-disabled.
Some of my friends would be non-disabled were it not for one stray chromosome.
Others because they didn't have an incident with a truck.
You, dear reader, may someday
have your own origin story.
You could miss a stair
you could catch a disease, you could make friends with a metal straw.
You could find yourself disabled in a matter of moments.
If we stop looking at these tragedies and start looking at these as new ways
of being maybe at the power of disability stigma would falter
just a little bit.
Origin stories have resonance.
They are what helps us to understand who we are.
Because non-disabled culture demands that we look at these origin stories
as tragedies, it becomes difficult to mourn the cause of a disability
without being perceived as disliking the person that you are.
Honoring that change by adjusting language is vital.
I'm a pro-vaccination activist.
I believe strongly that we should trust in science,
that we should eradicate the diseases that disabled people
polio, scarlet fever, measles,
mumps, rubella, COVID 19.
We should attack them.
We should fight them with herd immunity and vaccines,
and we should acknowledge that diseases are generally bad.
But that does not mean that the results of the disease,
a disabled life is a bad one.
Then it has less worth or less meaning.
A disabled life is still at its core, a life worth living.
My life is worth living.
Threading the needle
so that I could honor my feelings about the anti-vax population
that I could not want anyone else to have to be disabled in the exact way
that I am, and at the same time fight for my equality.
And the equality of all disabled
people is one of the hardest things that I have ever had to do.
It was difficult to find the path, but it's a path worth walking.
Disability will always exist.
To be human is to be vulnerable,
and disability is a factor in physical vulnerability.
The human condition is about perpetually changing and degrading as we age.
After all, the margin of the population that is considered
disabled goes up drastically after the age of 50.
Society does not mourn the abled lives of the elderly
because it isn't considered tragedy to simply age out of ability,
which means that it is the perception of when
and how you claim disability that determines who mourns for you.
I fought hard to feel like I could do both.
Fight rubella, but not fight deafblindness.
I’m going to skip forward.
Okay,
Women are socialized to be soft
and disabled women are expected to be even more so, childlike.
But once I started embracing my sharpness, I liked my self more.
I wrote articles for the university paper
outbeds that rippled out into conversations at the cafeteria that resulted
in long theological conversations on my way out of mass.
And that made me know friends in the administration at my Jesuit university.
When I stopped trying to behave
and started to throw rocks and break windows, it meant that my disability
stopped being burdens and also started being a part of who I was.
There's something to the fact that when I allowed myself to be spiky,
when I started to embrace the hedgehog nature
that was within me, my disability started to hurt less.
It started to hurt less that I couldn't see
because I knew how to fight.
I don't think that all disabled people are unlikable.
In fact, I think most of us are quite pleasant once you get to know us.
But there's something to the fact that one must be
a little bit unpleasant in order to defy society so boldly.
Sharp edges keep us alive.
To make living in an ableist world bearable
it helps to find your rough edge and to accept it is important.
Sanding them down will only lead to misery.
I tried so hard to fit in in so many different ways.
I described myself as only half deaf and half blind for so long.
I hid my cane when it mattered.
I didn't wear hearing aids.
None of it actually helped.
Because they were all ways of navigating in shame.
I was ashamed of being disabled.
I was ashamed of being different.
The shame came from so many different places,
but ultimately it took root.
I tried to evade my only reality.
I tried to laugh it off, to be coy,
to pretend.
For a long time
I would have been perfectly happy to not be disabled at all.
It was only when I started to use the words that fit me
that I started to grow into who I was.
I didn't start calling myself deafblind until my thirties.
I didn't start wearing hearing aids reliably until I was 24.
I didn't start using the Braille on elevators or engaging
with the disability community until 2011.
When I did, I started to value myself as a person
to feel that my life as it was, had inherent value.
My body was worthy of feeling pleasure instead of pain.
What ultimately helped me pull myself out of the shame spiral
was the disability community on Twitter.
One of the most important parts of developing a self-identity
as a disabled person is to actually talk to other disabled people.
No non-disabled person can substitute for that. Why?
Well, because non disabled people are part of the problem.
It's one thing to have a non-disabled person
tell you that they understand your access needs and act as an ally.
But it's quite another to sit around with a bunch of other disabled people
and bitch about access issues among yourselves.
Before 2011, I could count the number of disabled people I had spent quality time with
on one hand.
When I started to see more people who were like me,
my world opened.
Have you ever been a fan of an obscure book or movie?
Liked a board game that no one else had ever played, spoken
a language that was hard to find other speakers of?
For the non-disabled people,
imagine that you finally found the people who you could talk to about it.
That's what disabled Twitter was like for me.
I made friends and a
few enemies with disabled people all over the world.
I made some mistakes and had to learn not to show my ass.
But that's how activism works, isn't it?
We're loud and brash and we hope that we can find the way
to learn to fail better on behalf of our fellow human beings.
I also learned from my fellow disabled people
about the internalized ablelism I was carrying,
and I started to undo it.
One of the most crystallizing moments for me was
when I got my first scleral shell in 2009.
I'll spare you the details of how a scleral shell is made,
but I can assure you that having an acrylic plastic
mold made of your eyeball is nothing to sneeze at.
I had two eyes made.
One was the clear plastic conformer that allowed the viewer to see my occluded
cataract, the eye that I have had since I was a month old.
The other shell was painted to match my left eye.
I watched as my ocularist carefully hand-painted my new eye,
laying down small pieces of thread to recreate where a vein would be
carefully mimicking the pupil and the subtle green color of my eye.
I took her several days to create a piece of art
and armor that would protect me from the world.
An opportunity that I had longed for.
To the rest of nondisabled society, I could look like everybody else.
But when I put the painted shell
in for the first time to go out and see friends,
I caught a glance of myself in the mirror and my blood ran cold.
I didn't recognize myself.
It felt wrong.
Like there was a bizarro Elsa staring back at me.
A non-disabled woman I didn't know.
And I didn't want to be her.
I very rarely worn the painted shell since,
only bringing it out for job interviews and first dates.
Assuming that my occluded cataract would be a distraction
from the person that I am.
How (expletive) up is it that I believed a part of my own body
could be a distraction from my personhood?
But that's what ableism does.
It tells us that the parts of us that are different, that do not match
everyone else, must be hidden from view in order for us to be accepted.
What I have come to understand is that the revulsion my own face
with two matching eyes instead of mismatched eyes, was like a form of body dysmorphia.
My vision of
myself is a disabled body, trying to morph it into a non-disabled
one results in a strong psychological reaction.
Abled society is constantly creating visuals of disabled people,
transforming into non-disabled people as part of their dreamscape.
In Glee, Arty gets up out of his wheelchair
and dances an entire number before waking up.
In The Shape of Water
Elisa sings.
In the Theory of Everything
Stephen Hawking imagines picking up a pencil for a pretty undergraduate.
These images are all meant to indicate that disabled people
constantly want to envision themselves in abled bodies.
But when I dream, I am still disabled.
In fact, in my dreams,
it's my adaptations that are better.
I am able to sign with ease.
Buildings are accessible.
I walk across Mars with my guide dog.
I do not dream with binocular vision or dual stereo audio.
I dream in the body that I inhabit.
Some disabled
people, of course, do dream of their past bodies.
But in all the media examples,
only Stephen Hawking would fit that bill.
When I started to realize that I wasn't dreaming of a non-disabled future,
but a future where my disability didn't matter so much.
That's when I realized I needed to join the revolution.
People evolve.
One of the ways in which I evolved
was that I stopped seeing myself as working
within the system, fighting to change it.
And I started to see myself as outside the system entirely.
After all, if you're disabled,
the system is literally not built to support you.
You're not meant to benefit from it.
I became a resistance fighter against ableism.
It was a deliberate choice. One I made when I finally saw reality clearly.
Accommodations were just that, they were given out begrudgingly,
not out of genuine desire.
It took laws to force non-disabled people
to think about how disabled people lived their lives, not moral reality.
When I started to think about how I lived in opposition to the ableist society
I stopped being so scared of myself.
I had to get out of my own way.
I had to stop worrying about what other disabled
people looked like and focus on who I was and what made me disabled.
I had to own the body I lived in
and stop comparing it to everyone else's.
The world will do plenty of that for you.
Someone always wants to tell you who you're supposed to be.
I had to put my head down and focus on what mattered to me.
Of course, the world didn't want me to have equality,
so I found myself on the frontlines of the fight,
kicking down doors to explain what it was like to live my life
instead of asking for permission to live it at all.
I'm still learning.
I'm still discovering more about myself that I knew before.
Existing on the sliding scale of disability means that I am always re-learning
how to cast my self in opposition to the world I live in.
There's no good way to survive an ableist world.
Just because I've got a decent self-image
and a supportive community doesn't mean I don't suffer.
I do.
I get hate mail. I get trolls.
I am told that I am wrong for being proud.
My identity is questioned on a regular basis and there are days
when I need to retreat to keep myself safe.
Developing a self-identity
out of defiance isn't something we should have to do.
We should be able to grow in beauty and strength without having to constantly
force ourselves to stop conforming to the systems that are already in place.
What I wish non-disabled
people did to support young disabled people is simple.
I wish that they made space to have disabled people in their lives.
To do that, we would need disabled teachers, disabled doctors,
disabled parents, disabled people in all walks of life in all places.
We would need to create a world that doesn't thrive on keeping us
behind closed doors. And the language we use has to change, too.
There is so much ableism at the heart of the English language.
Footnote and others.
Get me started on French sometime.
So many harmful metaphors.
What happens when young blind women stop being the metaphor for ignorance
when deaf people are not bearing the brunt of the metaphors
used for politicians who ignore their constituents?
What happens when the
non-disabled people in our lives become our collaborators
in the fight against ableism instead of the tools of our suppression?
For many, it's unwitting.
But for every stray word,
for every restaurant without an accessible bathroom.
For every time I have to explain that truly,
without a question, I am disabled,
to a person who says they care about me and my life, there is a cost.
I have to wear more armor.
I long to show my soft underbelly to the world.
I am not only the fierce knight I present to the world.
I am vulnerable.
I wish that the world could let me be both.
In addition to wanting to swordfight today, to fully unload my mind
on the nearest target, I also want to sit quietly in a park and read a book.
I want to snuggle and mutter about affection.
Non-disabled people have the privilege of softness.
They don't always have to be strong.
But when I let my guard down, I become cute.
I become vulnerable.
That vulnerability is weaponized so easily.
I have struggled to find a balance
and I'm still not there.
I'm going to stop reading there.
And before I start taking questions,
I want to share a story of something
I did a couple weeks ago.
I went and volunteered at my daughter's school.
They did a unit on Helen Keller.
I'm going to pause for all the deafblind people in the room to wince.
All of these non-disabled kids,
about 70 of them,
I looked them at them, all in the eye, and I said, I want you to tell me
what you think about the story of Helen Keller
and what it tells you about disability.
And these 70 second graders told me
that my life and Helen Keller’s lives sounded sad,
crazy, helpless. hard, confusing.
And I looked at the second graders
and I said, well you're wrong.
And now you get to ask me any question
you ever had about being a deafblind person for the next 40 minutes.
And I subjected myself to that.
And at the end of those 40 minutes,
I asked the second graders to make another word cloud...
and their word cloud had changed.
Instead, they said that disability was beautiful,
that it was interesting, that it was exciting,
that they were curious.
And all that took was not presenting
the story of Helen Keller as a tragedy for her parents,
but presenting the story of Helen Keller
as someone else's life experience.
And I'm telling you that because I think there is hope for changing ableism.
I do not think we have to continue living in a world where children
grow up thinking that it's hard or sad to be disabled.
Where we can actually have non-disabled kids
think disabled parents are cool.
Now, every time I'm at the school volunteering
There is one second grader who signs hello to me.
It doesn't matter how far she is away from me in the hallway.
She signs “Hello”.
And other kids are starting to pick up on that.
Some of them ask me if I will teach them more signs.
Now my ASL is not great.
I'm still learning.
But the fact that hearing non-disabled kids have decided
they want to learn ASL is a big deal to me
because it's not some weird thing that people are doing,
which is what kids said when I was in elementary school.
First it was, what we learned
some sign to sing this one song in elementary school, and that was it.
And then it was just a weird thing some people did.
But I think there's hope.
And so
I wanted to share that hope because I think it matters.
And the opportunity to help change it matters a lot to me.
Now that we've had our interpreter change, we're ready to start taking questions,
because I think it's
going to be a little bit like playing telephone.
- We've got a we have one here in the front row,
[Audience] My name’s Jessica, first of all liked your book of
I uh, what's your daughter's name and how old is she?
- So I'm not going to share my kids’ names because I want them to have their privacy.
But they're five and seven.
[Audience] Oh sweet! Okay.
And I did like your book.
- Thank you very much.
- Do we have any questions on Zoom?
- Not yet. Okay.
[Audience] Keith here. Making sure that I also have the tactile communication happening with
my friend here.
So the title being seen as a deafblind story.
I thought that was a bit ironic.
Or was that intentional? Being Seen.
Can you tell me a little bit more about that title choice?
- Well, one thing I'll tell you is that you don't really get to pick your title.
That's one of the tricky bits of publishing.
But you're correct that it's kind of a joke.
A lot of these theories that this book is built on are by disability theorists like
Rosemary Garland Thompson, who talk about the way that we view disabled bodies.
And so part of what this book is about is
how disabled people, especially deafblind people, are viewed,
even when we can't necessarily see how we're being viewed.
So much of our experience gets filtered through visuals,
even though we can't always see what people are talking about that
it's hard to escape the language of sight.
So you're correct.
There is some deep irony in the title.
I really wanted to call it Bat Girl,
but I was told that that was a copyright infringement.
We had a few other titles bouncing around.
I also thought about stealing a Helen Keller-ism
and calling it Alone in the Light.
Again, a play on light
- From Helen Keller, Alone in the Light. - Yes.
Her famous quote that a lot of sighted people like to use
is it's better to walk with a friend than be alone...
It's better to walk with a friend in the dark
than be alone in the light.
- Jessica? - Yes.
[Audience] Did you ever consider being a comedian?
My husband is currently laughing in the back.
That is one of the things that I keep being told I need to do.
But I have an entire bit on dating in New York City while blind.
- Do you really? - Sadly, yes.
[Audience] Hi. My name is Ellie.
Ellie.
And I'm a white woman with brown hair and I'm wearing a black shirt and pink pants.
And I am wondering about your opinion.
I love your Twitter.
That's how I found you originally was your Twitter account.
And I'm wondering about your opinion about the current state of Twitter
and if you intend on building the disability community somewhere else.
Because I know that there's been a lot of talk about that online.
- There has been.
Right now you can find me on Tik Tok,
which is not the most deafblind
friendly platform.
I would like to find a better alternative than Twitter,
but right now Twitter has what we have,
which is why there are a lot of disabled people sticking around.
I cannot for the life of me figure out Mastodon.
I don't know if I'm too blind or if I’m too old.
This is like.
Like the mammoths. Yes.
And it's it's really tricky.
I think I think that it's one of those things
where social media platforms have changed so much.
And because we're losing a platform, essentially to fascism,
I'm at a loss.
So, yeah, it's a it's a tricky question.
I will stay on Twitter until it burns to the ground.
It is where I built my presence.
I think
I think I went viral for the first time yelling about the Mr. Magoo movie.
And I think my most recent claim to fame was pointing out that Helen Keller
was actually deafblind to the tik-tokkers, and that didn't go well for me.
But then we had a coup,
and so all the hate mail just kind of diverted somewhere else.
And, yeah, it's it's actually a real tragedy.
Twitter has been an important space for disabled people for the last
10 to 12 years.
And I see people centralizing on Tik Tok,
but again, it's not the most accessible place for everyone.
So I'm not sure what's going to be next.
- Thank you.
[Audience] Someone online has asked if you could define ableism?
I can’t hear them.
okay.
So ableism is
the “ism” for disability.
Essentially it is the disability
version of well, sexism.
It's this societal structure by which we dislike
disabled people and discriminate and stuff.
So it's a it's a social structure.
And ableism is related to autism,
which is the specific ism that is toward deaf people.
So there's a couple of different vectors for ableism,
but they all centralize on if there is something different
about the way that your body interacts with the world,
whether it's your senses or your physical being,
that's what's wrong with you.
And society is going to shun you for that.
That's what ableism is and it's incredibly toxic
and it's everywhere.
[Audience] Hi. My name's A.J.. I'm deafblind.
And I was wondering about how
you view your identity as a deafblind person.
In in my community,
we focus on tactile, and that's definitely part of my identity.
And it's a strong cultural identity as opposed to a medical identity,
you know, and spent a lot of time
as we know that that that sighted deaf
folks have had to contend with this issue for many, many years.
And blind people hearing blind excuse me have
excuse me interpreter have had to deal with that medical model as well.
But I'm wondering about your take on that.
The difference between a medical model versus a cultural model of deafblind?
- I love this question.
So for me, because I exist
with both a visual loss and a hearing disability,
I have both my physical experience and my embodied experience
of the world is radically different from non-disabled people
and also is different from blind people I know.
And it is different from deaf people I know.
Like it centralizes around my embodied experience.
I was denied access to Protactile as a kid.
I don't I didn't have that experience and I've always wanted to have more
of that cultural component within my life.
But it wasn't something I had access to.
And so for me it's been about embodiment.
That's where my identity has come from,
but it's also cultural that I feel very connected to the disability community
and I have been working my way into
deafblind communities and deaf communities and blind communities
as those opportunities have presented themselves.
[Audience] I have I have a godson who's not quite four yet.
And for the last year and a half at least, he's been learning sign language
at the school he attends at the University of Washington.
The Experimental Education Unit is a... prioritizes inclusivity,
and so he's already teaching me and it makes me hopefull.
And I was wondering where do you see signs of hope?
I think I see signs of hope in spaces
where disabled people are being included.
As an example, when disabled people are invited to be in writer’s
rooms in Hollywood, when we get to tell our stories
instead of them being told for us, that's one of the big spaces that I see hope.
It's not happening quickly, but it is happening.
I also will go back to the story I told at the end of my reading.
I think kids right now are more open
to understanding disability than they were when I was a little kid.
I've certainly seen more openness with this most recent generation.
It's not just about their openness
to being queer or being gender nonconforming.
We've seen a lot of those changes in this generation,
but it's also about being more inclusive of disabled people.
I've seen that too.
I also see it in and this is sort of a me centered thing, but the fact
that universities are actually assigning my book feels pretty hopeful.
I one, I don't think I would have imagined a university
assigning this book where I say (expletive) ableism regularly
at the university level.
But it was the central book of the year
for the University of Northern Michigan this year.
Their entire diversity program was centered around this.
So the fact that academics are saying,
my book is worth reading to teach disability theory,
and they're not relying on non-disabled people and non-disabled
texts to do that, that feels like a shift.
[Audience] Thank you.
[Audience] I have a question over here.
So my name is Bruce. I'm deafblind person here in Seattle.
I've been here for a while and I was curious, your book,
what was your really the goal that you wanted to accomplish?
And the question I really want to ask is about your title.
You said you wanted to be called Batgirl
and you're like, (expletive) I have to change it.
So now your book and your
manuscript that you wrote when you gave it over,
I'm sure that change or the publisher, how he edited
it changed the content and he was editing.
So my goal with this book
was to write a text that was not nice.
And what I mean by
that is a lot of the disability memoirs that I had seen
for about inspiring non-disabled people
to be nicer to us
or to think that we were equal to them, or to
make you think is really cool that a blind person
can climb Everest.
And I was really tired of that (expletive)
because I shouldn't have to be exceptional
to have equal rights.
And so I wanted to write a book
about the societal stuff
that's going on that wasn't nice
because I was kind of tired of being nice to non-disabled people
about things that really we shouldn't have to be nice about.
And shockingly, the publisher didn't change that.
The book isn't nice.
It is not as mean as it could have been.
I still walk people through things, but
I didn't tiptoe around
non-disabled people's feelings
and that is often the expectation.
And that was what I didn't want to do.
So that's that's part of my goal is to get people to hear us
without having to be nice.
[Audience] AJ, here again, one more question here.
You know, oh, what was I thinking
in the protactile world
it's a language that's conducted through touch.
So that's something that I always emphasize as a deafblind person,
is that I engage with the world through touch.
That's that's priority number one. And, you know,
there are other ways to engage with the world, but but they don't get me
the information I need.
So I have to engage with the world through touch.
And so I just really was sad to hear that you were
you were restricted
from having that opportunity as you grew up.
And so I was wondering, like, what do you do now?
Are you working and using protactile with your family or with your children?
How when you engage with the world, are you using that as a communication strategy?
Not yet.
I do use ASL with my kids. They're hearing so
they're sometimes resistant to it and sometimes they're not.
It's sort of depends,
but protactile is something I want to learn.
I do engage with the world
very significantly through touch.
Touch is how I get information about my surroundings,
whether it's through a cane or through my hands.
I use physical body space to understand
my context in ways that I don't think,
actually, I know this, sighted people don't do this.
Other blind people to some extent don't use their bodies the same way I do.
And so I do communicate with my own space
and my understanding of the world through physical touch.
I don't know protactile, but I want to.
And it makes me really sad to.
[Audience] A.J. here again, I just want to make sure that I'm clear.
I'm not sure if the interpreter is being as clear with my comment.
No, but protactile is just one thing.
It’s been around just for about 15 years, but that being nice, that old fashioned
kind of stuff, not using touch is to me so far outdated.
And now everything is touch, touch all the time.
And that's really one of the key concepts of protactile
and for so many people, touch is taboo, right?
So many, many people.
But we just have to be persistent and relentless
and really get in there and ingrain the value of touch
ubiquitously throughout society.
Does that make sense?
You know what I mean? So that it's more appropriate.
It feels appropriate instead of inappropriate.
- Yes.
- I don't know if you've
had that experience your own self, but touch has being an inappropriate thing.
I mean it really.
-Yes.
That actually resonates for me in different ways
because I have had to learn how to do things with my hands
that other people don't learn.
And I recall a lot of times asking for people
to show me with my hands, like, please use my hands to guide me.
When it comes to learning how to use this object
or get through this space.
And you're right, sometimes people say, don't touch that, for example.
And it's like, well, I can't see it well enough to learn a lesson if you let me.
One of the most freeing experiences for me was, yes, yes.
[Audience] Yes! Yes!
- Okay, we've gotten the communication.
One of the most freeing experiences for me was
when I went to France about five years ago
and I walked into a museum
and it was Versailles
and one of the museum curators saw that I was wearing hearing aids
and I had a white cane his response,
was to grab my hand and put it on a 200 year old statue.
They don't do that in America.
But I got to feel up all of these statues I could not see.
And I actually understood what the art was in some ways for the first time ever,
because with my vision I can’t see statues from ten feet away.
They're blurry.
[Audience] Oh, wow.
So yeah, touch is vital
touch is how we learn.
[Audience] I think there was Riley and Keith and Jessica. Yes.
- Okay. Okay.
- I'm completely blind as well, so I understand.
I, I see with my hands too. So that's a comment.
So I understand.
But I can
so I would have to
I can hear, but I just have to be able to.
I use a cane too just like you do.
- Does Keith have a question?
- Yes. Yes, I do.
So Keith here, I have a follow up
I wanted to talk about LinkedIn.
I have been noticing that it's showing up
more and more on LinkedIn.
There's this hot topic of accessibility all over the place there on that platform,
talking about different companies employment, different programs,
you know, all kinds of different things related to accessibility.
So it's really seen that at the senior level too, at the executive level
where they're really thinking about accessibility finally
and having accessibility departments and things like that,
and but then not having deafblind people
in those roles like, you know, and of course we have the DEI as well.
The diversity, equity, equity and inclusion departments now.
And they say that about 70 to 80%
of the executives in those departments are white.
So how does that represent DEI needs?
So, you know, they need to have BIPOC people leading those types of initiatives
and you're seeing that happening in the accessibility
world as well, where it's not being led by disabled.
And so we really need to, like you were saying, push
for disabled people to be in these leadership roles.
Inclusion is important. Yes. But,
you know, you have to have
it been happening from the grassroots, from the people who are impacted.
- 100%.
I work as a accessibility specialist at a tech company.
That's my day job because writing books does not pay the bills.
And I tell you what, the tech world is still not caught up.
It's really frustrating.
I fought to get into accessibility position and
I really wish that I had a frankly leadership role.
I wish I were working
at a higher level in tech because I think that is where we belong.
Disabled people should be leading accessibility departments
and we should be in executive roles.
in DEI, you're correct that BIPOC folks need to be leading the way,
but I believe that disabled people also need to be in those spaces
because if you're not disabled, you don't know the full extent of the reality.
And I find that every day I have met people who are non-disabled,
who work in accessibility, who try to tell me how to do my job.
It does not go well and
actually it goes very badly
because the minute that you try to tell me
how disabled people work,
if you haven't been listening to us, you don't actually know.
One of the most important spaces where disabled people need to be included.
This is where my spouse is going to laugh is in product management.
Because product managers are the people
making the things that we use.
And if it's not accessible,
guess what doesn't happen?
Disabled people don't use it
and they can't use it because you didn't
think about the accessibility when you thought of the product.
So yes, product management needs to have an accessibility component.
We need to be putting it not just in accessibility spaces but everywhere.
And to just quote every disability protest ever,
nothing about us without us.
Audience clapping.
good way to wrap up.
If anyone has any more questions, I'm just going to turn to my spouse for a second.
I believe I support that.
That's Arthur.
For those of you who read the book, he's stuck around.
Arthur is hiding his face.
Just, you know. Great.
And thank you for telling me.
Really, huh?
Oh, well, Elsa, thank you so much.