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] ♪ ♪