HAYLEY: Touch is taboo in our society and in our culture.
So we learn an attitude
that we internalize from a very young age,
"Look, don't touch; look with your eyes, not your hands."
And as we grow up, those thoughts
are really embedded deeply within us
and we have to do a lot of work to kind of unlearn,
relearn, and recenter, and then apply the norms
that we feel right about, that do fit us as DeafBlind people
because hearing sighted norms do not.
[soft piano music]
OK, this is Rebecca.
First of all, I would like to thank you both, sincerely,
for coming and sharing your time with me today.
REBECCA: Today, I will be learning a whole new language.
All the people I will be interviewing are DeafBlind.
INTERPRETER: It encapsulates Protactile.
REBECCA: The voices you hear are interpreters...
INTERPRETER: It is so rich and comes with so much more.
REBECCA: ...and so this is a story
that may unfold an unfamiliar way.
These are the creators and teachers of Protactile (or PT)
and they will be taking us inside their world:
a world experienced and expressed wholly through touch.
ROBERTO: Our biggest organ is our skin,
so why don't we use it?
HAYLEY: We are really touching something.
What is its texture? What is its temperature?
What is its shape?
DeafBlind people typically get information last.
ROBERTO: How do we know that people even are around us?
We don’t, if they don’t touch us.
REBECCA (VO): Historically, DeafBlind people
have had to rely on others:
interpreters and support service providers.
They have traditionally communicated with
American Sign Language (or ASL), or tactile sign language.
But Protactile is completely different
from anything that’s come before it.
It is a language created by the DeafBlind, for the DeafBlind.
Having agency is at the center of Protactile.
It allows for direct contact with people
and their environment without someone in between.
Protactile fosters group communication,
deeper connection, and community.
[laughter]
I am Rebecca Alexander and I have Usher syndrome.
Usher syndrome is a rare genetic condition
that is the leading cause of progressive combined deafness
and blindness in the U.S. and around the world.
Needless to say, I have a vested interest
in learning this new language.
Protactile began in 2007, and like all languages,
it has its own grammar and syntax.
It's communicated with the hands
and articulated in contact space
using the arms, shoulders, back, and legs.
This patting here is called back channeling,
the equivalent of nodding.
A way of indicating "I am following."
Protactile can also provide background information
like how many people are in the room, whether they're sitting,
standing, or even what's on the television
in the waiting room of a doctor's office.
♪ ♪
Jelica Nuncio, a trailblazer
and one of the creators of Protactile, served as my guide.
JELICA: So I'm gonna use our legs
and first of all check in with you Rebecca
to make sure that you're comfortable.
Are you comfortable with how we're arranged?
OK, so our torsos are a little far away,
so we want to be close like this
because we're gonna be using our torsos and our arms
and our legs when we’re talking in PT.
So we’re gonna really just focus on what we’re feeling
between the two of us.
You try to feel me as much you can Rebecca, OK?
Don't worry about leaning back and trying to see, OK?
Just really try to feel my language
because that’s what I'm expressing is all through touch.
REBECCA (VO): Jelica was born in Croatia,
the only DeafBlind person in her family.
She did not have language until her family moved to the U.S.
and she learned American Sign Language.
She received a master's degree in public health
and in 2007 became the first ever DeafBlind director
of the DeafBlind Institute in Seattle.
JELICA: Historically, it's been run by hearing/sighted folks,
but when I got in as director, we switched to a new model.
We couldn't afford a huge budget for interpreters.
So we had lots of different programs and projects
that we are running and we thought, well,
we're going to do this ourselves, this works.
We said we’re not going to be using
hearing/sighted norms here.
We're not gonna be abiding by Deaf norms either
and people said, well then, what are we gonna do because
we hadn't been in communication directly historically
and we established a PT Zone first and foremost there.
And we said, anyone who comes into this space
is not to be speaking in English.
So there's no auditory communication here
and there's no visual ASL happening either.
Instead, when you come in,
what you need to do is walk up to us and touch us.
REBECCA: As Protactile developed and its benefits became clear,
Jelica went on to found Tactile Communications,
a learning and education center for DeafBlind people.
She also trains interpreters at the Protactile house,
the first and only of its kind in the world
housed in Mommouth, Oregon near Western Oregon University.
JELICA: Protactile language has been researched since 2010
and there are many, many rules.
And these aren’t arbitrary rules; these are rules
that have arisen organically within the language.
If you think about how a person may tactically access ASL,
well, it's akin to lip reading in that we would be missing
70 percent of the information because there’s no contact
with our bodies; everything is up in airspace.
REBECCA (VO): 70 percent.
Imagine receiving only one third
of what someone is trying to convey to you.
JELICA: So instead, what we use in Protactile
is a four-handed grammar.
We're articulating onto the body of our interlocutor,
and now, more and more Protactile words
are coming into their own.
We're not borrowing ASL words as much as we did in the beginning.
ASL signs derive from a visual environment
and we want to be articulating what we’re feeling.
How something feels is very different
than how something looks.
REBECCA: So for example, ASL sign for dog.
There's two different signs:
first, dog like, scratching the ear, second is dog.
Protactile sign for dog is this
because when you feel it,
it feels like what the head of a dog feels like.
This is the Protactile sign for dog.
[euphoric music]
REBECCA (VO): Jelica works closely
with Hayley Broadway and Roberto Cabrera.
We sat in circle to have this discussion.
Protactile is especially groundbreaking
because it allows DeafBlind people the opportunity
to communicate in a group.
HAYLEY: The way that we’re set up here
in this Protactile three-way allows us all to know not only
that we're all three in conversation with one another,
but also where we each are in space
and what each of us is experiencing at the same time.
We're all sharing at the knees,
not the eyes and face, which is a hallmark of ASL,
but the knees and the hands and the legs.
REBECCA (VO): Hayley and her brother both have Usher syndrome
and were raised by hearing parents
who learned how to sign to communicate with them.
She is a Protactile instructor for DeafBlind children
and their families.
Roberto is third-generation DeafBlind
and a vocational rehabilitation counselor
and teacher for people who are deaf and DeafBlind.
ROBERTO: The way we're arranged is so that we can share
information, we can have a natural, organic conversation.
That's why we're established the way we are.
And we set up information to be shared on a variety of sources.
It could be on your forearm, it could be on your thigh,
it could be on your shoulder.
It really depends on how you want to express
the information being shared and reciprocate that.
♪ ♪
REBECCA: So, you know, in the hearing world, there's a saying
that the eyes are the windows to the soul.
How do you feel about touch
the way that hearing people have that saying?
ROBERTO: Touch will tell you a thousand words.
I mean you look at a picture and that tells you a thousand words
but really touch, it has energy, it has emotion.
Everything is right here at our fingertips.
I mean there is so much you can obtain.
And our biggest organ on the human body is our skin,
so why don't we use it?
[hands tapping]
HAYLEY: Well, a hug is a way to come together
and really feel warmth from another human being.
But, you know, sometimes you get a hug from someone
and they lean over awkwardly,
their feet are really far away from you,
they're leaning kind of back or they give you an awkward pat.
That conveys so much information.
So, there's a soul-to-soul connection
that can happen through touch also.
Touch oftentimes is a fleeting sense
for a lot of hearing/sighted people and what we want to do
is broaden our tactile reach
so we're not just getting in touch with things
and then disconnecting two seconds later.
We're really touching something.
What is its texture? What is its temperature? What is its shape?
So that we can really know those objects and then
those can be encoded into Protactile language
because they originate from a place of feeling.
[piano music]
REBECCA (VO): Protactile is more than a language;
it’s a philosophy and a movement,
the antidote to what DeafBlind historian, scholar, and poet
John Lee Clark has termed distantism,
ROBERTO: How do we know that people even are around us?
We don't if they don't touch us because everything is designed
for visual and auditory modes.
And that is distantism at its finest.
HAYLEY: John Lee Clark talks about autonomy
in that distantism context.
For many, many years, DeafBlind people were raised
with a lack of autonomy because any time they were
in a family environment, going to the doctor, or going
into school environments, things were done for us.
And what that did was prevented us from getting
first-hand experiences and figuring out our own sense
of embodied experience in the world.
JELICA: For example, if we’re going to touch this pillow,
we're going to do it together.
I'm not going to grab it and then hand it to you;
You are going to be reaching with me in copresence.
Copresence is an concept in Protactile movement
because we have power imbalances that occur
if we're not in touch and sharing information directly.
People will also sometimes do things for us
and then say, "Here you go,
I'm behaving in a way that’s empowering."
But, you know, we don't need you to empower us; we have power.
ROBERTO: And of course, people,
they are not sure where to start with touching.
Most people feel very nervous about this.
But they can start with our shoulders.
It is a very simple and safe place
that is appropriate to touch.
And just that one small cue
is the first step away from distantism.
♪ ♪
REBECCA: What happened the night
that I was invited to dinner to
the Protactile (or PT) house was a profound experience for me.
They were having tacos that night and invited me to join.
Cameras weren't allowed and I said, "I gotta go."
And when I got there, it was completely dark,
because of course;
they don't rely on vision or hearing to navigate.
[door creaking] And I realized
that I could see absolutely nothing.
I also realized that I was able to hear and being able to hear
put me at a disadvantage if I was trying to learn a language
that was based in touch.
So I took my cochlear implants off
and I joined them completely deaf and blind
in this completely DeafBlind world.
I was given a tour of the entire house based on touch
and it was so interesting to experience the whole house
not based on what it looked like, but what it felt like.
Having to eat tacos with them
and figure out how to make it all work
and not be able to communicate what I needed by using my voice,
nothing other than touch, well, how do you communicate
when you have messy taco fingers?
When I was getting ready to leave, my friend Lesley
signed on my chest and it felt like she was tracing
the shape of like a semicircle from my left shoulder
to my right shoulder and I didn't understand.
So I asked her in tactile sign, what does that mean?
And she was saying goodbye to me.
She was telling me that she was smiling,
that she was happy to have been with me,
and because I couldn’t see her smiling,
she was letting me know by...
It was such a vulnerable and incredible experience,
certainly not something I think a sighted/hearing person
would ever think of or even feel comfortable with.
Last question about,
how you, you, respond to hearing/sighted people...
hearing/sighted people who say
when you teach a DeafBlind child to rely on their touch
and to really develop their own form of communication,
you ostracize them further from being able to participate
with the rest of the world.
What are your thoughts about this?
JELICA: So, I think the key here isn’t
just to think about the children
need Protactile, but anyone in our world who wants
to interact with people who are DeafBlind need Protactile.
I mean sure, you could say that the world
is hearing and sighted, but DeafBlind community
is a minority community, as are many other communities
and it’s not always on the backs of the minority communities
to assimilate to hearing/sighted norms.
We don't want to think about the fact that the community
is centered around DeafBlind people.
It’s not; it’s a community centered around touch,
around Protactile norms and anyone can adopt
those Protactile norms.
The families are adopting these norms,
friends are adopting these norms
so that we can all share in tactile space together.
We go to restaurants and they bring a cup to the table,
they touch the cup to my hand or to the DeafBlind child’s hand
instead of putting a cup on the table and not touching me.
And I knock it right over
because I don't even know that it’s there.
So again, Protactile's for everyone.
You don't have to assimilate
because the world isn’t a stationary place;
that’s just decided upon by those in the majority.
The world is an ecliptic place where we all can share
and figure out how to share together in a modality
that we can jointly connect in.
[hands patting] [laughter]
CREW 1: OK, now hit it. CREW 2: Do it.
[clank] [laughter]
♪ ♪