The Nation's Premier Autism and Disabilities Conference

November 15-17 | Columbus, OH

November 15-17 | Columbus, OH

The Nation's Premier Autism and Disabilities Conference

2016 Summit on Sensory Disabilities


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Video Transcript:

My name is Julie Stewart. I'm an Outreach Specialist at The Outreach Center For Deafness and Blindness, and I am so thrilled to be here. I am so excited and honored to have aj and Jelica here with us today. I just want to tell you a little bit about these two amazing social activists. My former colleague, Katie Delia, and I volunteered as service support provider at Seabeck DeafBlind camp under aj as the director. Prior to the start of the camp, aj and Jelica trained the service support providers to prepare for providing environmental access to the campers.

One of the many everlasting impressions I had from the camp was Jelica saying, she said yes, individuals with Deaf-blindness need to have a sense of autonomy, and I'm hoping that we can empower our learners with that sense of autonomy. They will be so successful with that.

So I am so excited to welcome you both here. Here is aj and Jelica.

[APPLAUSE]

Thank you, thank you, Julie. Thank you so much, we are thrilled to be here. Hello everyone. Hello. Hello. Hello, my name is Jelica Nuccio. This is my sign name, a y from the shoulder to the hip.

And hello, everyone. My name is aj granda.

Are you all ready for our fishbowl experience?

OK, hello there. Where are you from, Jelica?

Well, that's kind of a long story. I was born in Croatia. I was born deaf. I moved to America when I was eight years old. And at that time, I honestly didn't have a language. I didn't develop that until I was much older. There was a deaf program that I was a part of, but my family didn't know any sign language. I was really raised with a strong oral background.

When I moved, I was put into an oral school. And it kind of went from there. When I was in high school, I was mainstreamed. I was the only deaf person, and there were no interpreters. Which was quite an experience for me.

I went to NTID in Rochester, Technical Institute. And that was really the first time that I was exposed to interpreters. I was exposed to interacting with other deaf people. What about you aj?

Me?

Yeah.

Well, I'm from California. I'm from San Diego. Anyone here from San Diego? No? All right. So I was born deaf as well. And I am the oldest of five children. My brother is also DeafBlind. And then we have three siblings who are younger than us and are hearing and sighted. So when I was born deaf, my parents put me in an oral school, like Jelica parents did, and that really was not a good fit for me.

Exactly, you too.

So I was moved to a program that used ASL. It was a public school program with ASL. And then when my brother was born, since they had already had that experience with me, my parents decided to use ASL at home and really get involved in the ASL world. So I was mainstreamed into the high school, but we were signing at home.

And then I went to the Deaf residential school in California. When I graduated, I already felt like I was a member of the Deaf world. And my identity as a DeafBlind person is kind of a different story. So maybe we can talk about that part, Jelica.

Great idea, yeah. I mean really, as I mentioned, my first exposure to the Deaf world, it was a life changing experience, obviously. It affected my identity. Up until that point, I really struggled to identify as a Deaf person. And I couldn't fit any group. Give me your other hand aj, I want to show you really what I'm signing. I couldn't match anyone that I was around. I wasn't feeling like I was a part of it.

I realized I was DeafBlind, but that was a slow process as well. I was losing my peripheral vision, and that affected everything. That affected my communication and connection with people. I was 19 when I found out that I was DeafBlind. But that social experience, that skill with people, really had to change. I had to change my education decisions, my career, my vocational ability, I mean everything. It was impacted as a deaf blind person.

So, of course, I had interacted with Deaf and DeafBlind hearing people as well. My husband is deaf. And at that time I was really a part of the Deaf world, once I married him. We moved-- well I should back up. At that time, I lived in Alabama. I grew up in Alabama. And so, of course, there's diversity there.

I was a part of many different groups, or exposed to different groups, very strong religion in that area in the south, as you might well know. But that influenced who I was. I worked in Atlanta, Georgia, after graduation. As I mentioned, I graduated RIT. I had a degree in biology, and moved to Atlanta, and that's where things needed to change.

That's where my identity started to change. I started to identify as a Deaf person, and then changing that even to a DeafBlind person. But at the time, I worked in a medical genetics field, so I was using my eyes all the time, right? I'm looking in magnifying glasses, I'm looking at magnification devices, all different kinds of things. And I decided I needed to go back to school, because I knew my eyes would be changing.

So I went into mental health-- excuse me, public health. And I decided I needed to be a part of the community, the DeafBlind community. So I moved to Seattle at that time. Because there's so many DeafBlind people in Seattle. I said, that is what I need. And that's when I started to develop my identity as a DeafBlind person. But what about you aj?

So I have a little bit of a similar story. I found out I was DeafBlind when I was 16. And my brother found out the same day. He was 14, I was 16. And it was a shock, at first.

I bet.

And people were advocating for us, and wanted us to have jobs like they do. They wanted us to be able to do things like they did. But figuring out how to do that and how to fit into that same world, the majority culture in America, that is a challenge. So you know nobody wants anybody else to miss out on education and opportunities. But really, all of those opportunities are designed for people who have use of their vision and use of their hearing.

And so I was trying to fit in and be as normal as possible, as sighted as possible. Did you feel that way?

Oh yeah, absolutely.

So I was trying to fit into the existing system and the existing culture. And I went to college, but I left, because I got really frustrated with not feeling like I fit in. I moved to a bunch of different states. I was young, I was curious, I was adventurous. And really, I was also looking for my people. I was looking for people who were DeafBlind like me.

And so I moved and found DeafBlind people, and I liked it. But what I discovered was that hearing-sighted people were really running that community, and making all of the decisions for the DeafBlind people. And that really didn't feel right. So I would move to different places and discover the same system, the same set up. And then I finally decided to move to Seattle.

I had heard about Seattle for a long time. I had heard that they were a leader, they were the DeafBlind Mecca. We had a really strong DeafBlind community. And I thought, maybe when I'm older, maybe when I retire, I'll move there, because I'll want that. But when I was 27, I really realized that I didn't need to wait for that. I am a DeafBlind person, and I wanted to stop trying to fit into the hearing-sighted majority culture. And so I moved to Seattle, I met Jelica. And that was 15 years ago.

Sure was.

So for the last 15 years, the two of us have been working together. And we have been figuring out what it means to be a DeafBlind person, to have a DeafBlind community, and for everyone to be involved in that.

Right.

So all of you in this room, you can become engaged and members of the DeafBlind community, for sure.

And we are going to show you how today.

Absolutely, exactly. Oh, that's exciting. Yeah, they absolutely can. All of you can. And, really, aj and I first developed a working relationship over the years and years of being involved and realize that everyone is a part of this. Everyone is. It doesn't matter where you're working. I've worked in nine different fields. Some of that has included, medical genetics. I also worked at the University of Washington in the Financial Department as a specialist. I've worked as a waitress. Had a large variety of professions.

I, actually, was a DeafBlind service center Executive Director. After that, I also worked as a vocational placement specialist for Washington State. I think it was about that time that I decided that the system wasn't working. There was something wrong with that system. It just didn't fit. Whether it was government, non-profit, private company, school system, I took it in as each experience, and it's become a part of who I am today.

But, aj, why don't we stand up, and just start talking a little bit more about how we can create a sustainable world through culture, language, and community.

Yes. And I'd like to add one more comment before we stand up. So my beliefs are very similar to Jelica's. I've done a lot of traveling, a lot of moving, around as I mentioned. And one thing that always struck me is how isolating our experience can be.

So I've had, maybe, 30 jobs. Just like Jelica, I've experienced a lot of different fields. And in every job I've had, I have felt very isolated. I have been physically isolated, in a corner or a back room where I would be safe, but that's very isolating. I don't have interaction with other people. And even if I am around other people, because of the communication differences I still feel isolated.

And so that's one of our goals today, is to talk about that, and to talk about how to change systems so that people don't feel so isolated. So people don't experience the world that way. Sometimes people think a DeafBlind person having access to education and a job is enough, and really how to resolve that experience of isolation is kind of a mystery. And so we want to talk about it today, and we want to start the conversation so we can figure out how to improve that.

And we want everyone involved in that, it takes a village. So we really want to emphasize the community, the language, and the culture.

Exactly. Exactly. Oh, one more thing, one more thing. I just want to add that aj is a mother, she does have a son. I have a husband, who is also deaf. I've been married for 33 years. So I just want to mention that, because we do have full lives. It doesn't matter what it is that we're doing, we are not isolated. And we want to share with all of you how that's possible. What makes that possible in our community? How did we achieve that? So that's the next part. For the next 40 minutes we'll be sharing that information with you.

OK. aj here. So I want to open by mentioning that we have a PowerPoint. And in DeafBlind culture, we don't usually use PowerPoints for presentations, because they're visual and it's not accessible. So we do have one today, and it has just a few key points on it. But I will warn you that we don't always follow it. Sometimes we skip slides, sometimes we go off on a little journey and tell stories. So don't freak out if we're not following the PowerPoint exactly.

Exactly. We just did a brief introduction of ourselves. I'd also just like to say that what's going on, as far as the interpreters, we have to voice interpreters. And then we also have two interpreters standing behind us. And I just want to give a brief description of what they're doing because I know it can be visually distracting. They're giving us visual information on our backs. It allows us to connect with the room without using our eyes. And that's just an example.

What we showed you to start our presentation was what we call our fishbowl, because that's our natural language. That's how we express ourselves through touch, through tap. Through touching there's so much communication there. aj, do you want to talk about why it's so important to touch, and communication there?

Yes. DeafBlind people give and receive information through touch. Touch is our language. So it's not an ethical issue for us. It's a way of thinking. And touch is our birthright, because that is our access. That is how we get our information. That is our language. And it goes both ways. So sighted people, DeafBlind people, it works for all of us.

Exactly. Has the PowerPoint been loaded? I'm wondering what's up on the screen.

Do I push this? Let's see what happens.

Great. OK, it's working.

OK, that seems right. Well I think I need to go back. Maybe I'll ask Julie. How do I go back?

Yeah that skipped one of the slides. That's the second one. Maybe you could go on--

Let me see if I can find the next one. OK, we got it. OK, so first, I'd like to call your attention to the background of the slides. There's a blue, dark background with yellow font. And that's just easier for everyone.

Actually, I think it's a black background.

Oh, OK, black. Whatever, dark background with a yellow font which is easiest for everyone to read. So aj and I have been a part of the DeafBlind community for a long time, and we frequently have similar issues that come up, and themes. So we want to just start with the importance of autonomy and what that really is. What's involved in establishing that? How do you make a foundation so that autonomy is even possible?

There's three examples that I'm going to be talking about. And where DeafBlind children can really feel comfortable and exposed to a variety of things so they can grow, and learn, and experience things. This is not only for DeafBlind kids, but deaf, blind, DeafBlind, they need that opportunity and that social experience. Oftentimes that's missing. And they gain that by experiencing things, by interacting with each other.

Again, it's back to that autonomy that needs to be in place. And, of course, the earliest exposure of that is in the family dynamics. So, maybe, aj, do you want to talk a little bit about family dynamics?

Just checking in with Jelica about vocabulary. So in the vocabulary that the system has been using for a long time, including myself, is independence. And we've been saying for a long time we want DeafBlind people to be independent. And when we go to IEP meetings, and K through 12, we have that checklist, right?

And the goal is always independence. Can they dress themselves? Can they walk to school by themselves? Can they make decisions by themselves? There are different levels of independence that we're shooting for. And so as those boxes get checked, we say that the person is becoming more and more independent. And that word has always bothered me. So in the years that Jelica and I have been working together, we have really talked about that.

And are we really becoming more independent? Is one of us more independent than the other? How do you measure independence? Jelica is married. Is she more independent than I am? I have a child. Am I'm more independent than Jelica is? And people come up with kind of weird ways of talking about that. And it's interesting, and it's something I've been thinking about.

So really I think the word independence is interesting, because I depend on the city of Seattle for my transportation, for some of my housing, and so that's a weird way of thinking about it. So, really, I think whatever works best for each person, that's their independence. And I think autonomy is a better word for that.

So we use the word autonomy. And we came up with that word, because it's accessible language. So we're talking about each person's experience. Each person gets to pick their tools. Each person gets to learn different skills. They have their life experience, and that gives them the tools to make decisions. That's what autonomy is.

So one very simple example of that is we have person A. Person A decides to take the bus to work, right? And they make that decision, that's their autonomy, it's their decision. Person B decides that their best option is to ride with their partner to work, right? It saves gas, it's on the way, it makes sense, they have the same schedule. It's fine. They had the autonomy to make that decision.

Maybe person A and person B are both DeafBlind. Maybe they have other disabilities. It doesn't matter. The point is that they both have autonomy, they can both make those decisions for themselves.

Exactly. So, really, autonomy gets established at a young age. And, oftentimes, that's not a part of the school system, because people don't know what to do. They don't know how to make those decisions. They don't know what to do with a DeafBlind child. And I understand that, I do understand where they're coming from, because the system has been established, and it doesn't work.

And you're trying to follow that, which makes sense, but it's because autonomy is lacking. And it hasn't been a part of the system for all this time. And, really, just a simple example that I can share with you. So, oftentimes, we talk about oh, is this a safe place? Is this safe for them? And really it's that, what does that word mean? What does safe mean? Does it mean that you're not going to get hurt? If you fall you'll have somebody to help pick you up? You're not going to walk there again?

That's a similar concept of autonomy. It works the same way. So if somebody falls you get to learn from that lesson, right? So we've talked about if you remove the ability to fall, then how do you learn that experience? So maybe you use a cane. There's an opportunity, so you discuss that, and you learn together. So is it a safe place? Are you autonomous? These are questions to be asked. It's all about the approach.

So, again, I want to go back to the family dynamics. Oftentimes the family gets together, and they share a meal together. They have that dinner experience. But, oftentimes, the deaf or DeafBlind child is left out. They're not a part of that. Maybe it's because they are missing the conversation, it's not in a language that's accessible to them, or the person is caretaking and they're bringing the food to them. They're bringing the plate to them. They're bringing everything that they could possibly need.

But, again, how can that child have that social experience? If that's me, then I'm learning that I can't do it for myself. That's what I've gathered from my family experience, growing up in that environment. So another approach, another example, could be including touch. It's not just a simple thing. It's not.

But, maybe, you could develop a concept of having a smaller table where all members can be sitting around, maybe it's a fourtop. And you can have feet overlapping, or you can have your knees next to each other, or you can feel the vibration of the table, because it's close and within reach. You can sense the energy of the family. And you know who's laughing. Why are you laughing? Where's the food? How is it being cooked? You have all of that experience and exposure.

But, oftentimes, that isn't the case, and deaf and DeafBlind people miss that experience, for many variables. But that is also a part of autonomy. But, again, that is everyone in the family's responsibility to take that responsibility. Right? It's everybody communicating with each other and in a language that is accessible for everyone. If it's sign language, if it's only English, then it's not going to be accessible for all. But if everyone can touch, then everyone is communicating through that touch.

So if you have that environment, then you learn other things. And you can pick up language at a later time. Should we give more examples about the family? Do you want to add anything?

I think let's go to the next slide on the PowerPoint.

Great, could you go to the next? Another example I want to mention is the school system.

Just reading the PowerPoint.

I just grabbed a couple of different examples that I wanted to share with you of things that are already in place throughout this country. We just want to show you what it really looks like out there, and what we've been exposed to what we've been a part of. Whether it's in the family dynamics, where the deaf children or DeafBlind children are not involved in the conversation, because it's a very large table, and they're off to the side. They might be wondering, why is everyone laughing? And they're told oh, it doesn't matter they're just being silly.

It's a very common experience. Right? We all know that. Whether the child is deaf or DeafBlind, they just realize oh, OK, I guess it's not that important. I've asked for the information, and I'm not getting it. So, over time, they realize it's not that important to ask for it.

So the next example I want to share with you is just in a school system, a fabulous example in Minnesota State. The Minnesota State Academy. There was a DeafBlind student who had family support, they did sign, and the parents were hearing. The DeafBlind girl had a brother, who is also DeafBlind, also had a hearing sister. So there were four children.

But they were frustrated with the school system, so they decided to move to Minnesota where the environment was all deaf people. They still didn't feel that that was a real match, but they really wanted to get involved. And they involved the DeafBlind community in the area.

So they were a part of the experience so that they could teach that DeafBlind girl, as she grew up in the school system, she and her brother. And they had full access to everything going on around them. They were exposed to the tactile language of ASL. And, now, that Minnesota family is very supportive. They're very involved. They've redesigned their house so that it's most accessible for their children. They have dark backgrounds for the wall colors, they have small tables, they use dark clothing because it works for their children. They want to make sure that their kids are involved in what's going on.

So everything is through touch. For their experience, their exposure, and their growth. So this can be applied in a school system as well. Oftentimes, you see the parent signing, and the other parents might pick that up and realize oh, this makes sense to everybody. It's exposure by model. Also Gallaudet University I want to mention. Actually, aj, would you like to talk about Gallaudet?

Sure. I think maybe we should add that a little bit later. I want to add a little bit more about Minnesota and talk about how that is being mirrored in Seattle. So that Minnesota classroom, if the teacher is signing, what the DeafBlind student does, and where they are, is really important. So if the DeafBlind student raises their hand in that classroom, the teacher will actually go and touch them and get the information directly. So just like Jelica and I are communicating right now, we're getting information directly from each other. So that's what's happening with that student in Minnesota.

If we were separated, and I was using my interpreter to get any information about--

What is she saying?

--what Jelica's saying. So I'm signing. Jelica's interpreter is copying what I'm signing, and telling Jelica. And we have no connection, we're not getting that social experience.

Come back here.

Where are you? Thank you.

Right? It feels weird, just for 30 seconds, for us to be separated. It's odd, it's not our culture, it's not how we get information. So that's what we're talking about. So having direct communication and information through touch is so important.

So when Jelica and I are talking with people at a conference like this, we always want to sit with at least one of the participants and have direct contact with them. We don't want our experience with all of you to be through our interpreters 100% of the time. And that's how we get involved in your community, and how you get involved in our community. And so that's what it can look like in the community, that's what it can look like in the school, and that's what it can look like in the workplace.

Exactly, exactly. That's one of the reasons why I'm so excited that Julia is here and invited us to come be on the stage and give a keynote. Because part of this is also just exposing this to all of you. Is it new for all of you? Maybe you haven't been exposed to this before. So you might be expecting that the interpreters are responsible to solve all the problems, and that's really not the case.

Again, this is an example of autonomy. This is the way that we get to decide and be a part of that. As I started to mention in Gallaudet, they have a strong influence on the school system, because as aj was explaining that direct communication, the teacher was taking responsibility, modeling, and then the students were able to see that and communicate directly with the DeafBlind students. Instead of having them separated out into a corner and only involved in the discussion by raising their hand, they are able to have that direct communication with the teacher, as well as the other students and their peers. And that's that social experience. So that's an example of what it looks like.

But if they're over-isolated and all of their information is being filtered through an interpreter, that's not a success story. They might have exposure, but they're not getting that interaction. And then they can't have a full picture of what's going on around them. They're getting a very small dose of what's actually going on. And that system isn't working. So having teachers involved, and the students involved, so that everyone can be involved in the shared experience.

That's that engagement, whether it's work, whether it's school. If a student needs some after school assistance, but oh, the interpreter can't stay, we can't do it. That's not going to work for anybody, right? So it's all about inclusion. And that takes everyone.

This is really exciting to me and I want to explain to you about Gallaudet. So Gallaudet has their first ProTactile classroom. And it's a 101 class taught by a hearing-sighted woman. And they have DeafBlind students in the class with interpreters. So there was a semester where this teacher I know had no real contact with those students and felt like they weren't really included.

And I'm talking about ProTactile which is a word we haven't really introduced yet. So ProTactile you might see it hyphenated, which is the old way of writing it but now it's all one word, ProTactile. And that's the philosophy that I mentioned earlier, which is that DeafBlind people give and receive information through touch.

So this teacher redesigned her class to be more ProTactile style. And so instead of standing in front of the room and lecturing to an audience, she broke her class into groups of three, and it didn't matter if they were deaf, DeafBlind, sighted, and she would join each of these groups and use sign language to explain things to each group.

And then the groups would rotate, and they would all discuss different topics. There would be announcements, or history lessons, or whatever they needed to talk about in that class during that day. So there was a rotation. And the DeafBlind students were having direct contact with other students, with the teacher. They were learning what everybody else was thinking, how everybody was responding to the discussions. And they were getting all of this information directly.

So I love this example, because all of it is through direct connections with other people. So from that experience, and from that social experience, those students develop knowledge, general knowledge, and they develop. Autonomy so that's another example of what this can look like.

Exactly, I think we're ready for the next slide.

aj, Me? You?

We want to talk about that.

Talk about the system? OK, that's me.

OK, great. So, again, talking about community accountability. What does that look like? So all of you here, or many of you, are professional providers which is a great topic for you to discuss about how to be accountable and involved. One example of that is actually a model that happened in Seattle that includes the community. Let me tell you about the example.

So this is in Seattle, this takes place in Seattle, Washington. And I'd say it probably started, maybe, 15 years ago. Many DeafBlind people were moving to Seattle, partly because of the transportation system that's in place. That was really helpful for people to feel that they had access to go out, and go out doing shopping, and they didn't have to depend on one or two people.

So it really was an important feature to figure out how to communicate with a driver. And that was a problem that needed to be solved. How do we know about the schedule? How do we make this accessible? So the Deaf-Blind Service Center, these are different community organizations, Lighthouse for the Blind, many DeafBlind people work there, and the Washington State Deaf-Blind Citizens, which is from the community leadership social gathering organization, Got together with the city of Seattle, the Department of Transportation.

All of these organizations came together to problem solve. They wanted to develop, basically, just a Bible. What we could use. It was pretty thick. Just a guideline rulebook. It wasn't something that needed to be memorized, as far as the details, but it was guidelines.

So we set up what is now referred to as a bus ticket. And I'd like to explain that to you. There's different numbers for our routes for the bus systems. And based on my bus kit, it's going to identify me as a DeafBlind person. If aj is a deaf-sighted person, she's going to have a different colored bus kit. As somebody who has other needs, they might have a different color. So the bus driver can identify us.

When they approach on the bus, they can look at me, as a DeafBlind person, is going to have a yellow bus kit with black lettering. aj is going to have a white background with black lettering. And then somebody else with other disabilities has a pink bus kit.

So if they notice that, oh, it's a white background, they're going to call out to aj and be like, hey, this is bus number 16. aj, being hearing, is going to approach the bus and know where she's going. As a DeafBlind person, they're not going to respond, right? I'm going to be standing there. They call out, hey bus 16, I'm just going to keep standing there.

But now with my yellow bus kit that has the number of the bus that I'm waiting for, the bus driver knows that they need to stop the bus, get off the bus, approach me, touch my arm, and then on my hand use what we call print on palm, POP, and draw the old number 16 on my palm so I know great, this is the right bus. They're going to then offer something to me, their arms, so that they can guide me onto the bus.

And everybody felt that this worked. Oftentimes, the drivers were not comfortable with this, but they were willing to make that exception for our community, because we worked together to come up with what works best for everyone involved. And this required DeafBlind people taking charge and developing these kits and these guides so that all of them can learn this. The brochure was developed, and changed, and included much more visual aids, more pictures, because, oftentimes, English might not be the first language.

So it included everyone. It had pictures, we included Braille in the brochure. aj, let me just show you what this brochure looked like. On this site it would have a map, and on the side you could look and see where it was that you're going. So the bus driver can see the picture of where it is, that they know where the route is.

And this was successful because it involved everyone who needed it. It wasn't just the bus drivers taking over. It wasn't only the DeafBlind community, because they weren't aware of the rules and the guidelines. They didn't know our communication and access needs. So it required everyone to come together. And, really, it wasn't just coming from the people at the top making those decisions. It really included everyone, so that the training could be had, the exposure could be had.

And that's just a model. The same thing can be happening at schools, in order to change policies related to touch. Because, of course, oftentimes in school environment you're not allowed touch the student. Many DeafBlind teachers, DeafBlind students, their teachers can't touch them. So that needs to be changed, that needs to be effected so that everyone is involved in the process and communication can be developed. aj, do you want to add anything?

I'm thinking about that. Right, so what Jelica's talking about, about decisions being made at the community level, is really important. And sometimes we work against decisions that are being made at the state level. That can be a big challenge.

Exactly. Let's go to the next slide.

Just getting information about what's on this slide. OK, so our presentation is about creating a sustainable world. And we've been presenting about ProTactile since 2007. We've been providing workshops about it. And today is not a workshop-- I wish it was-- so we're trying to summarize some of the information from our typical workshops.

So when we teach ProTactile, we talk about three major parts of it, P A and L. That's the acronym that helps you remember it. So P is for philosophy, A is for attitude, and L is for language. And the language part we don't have time to discuss today, which is unfortunate, but philosophy and attitude are really important, so I want to mention them.

The philosophy of ProTactile, again, is the belief that DeafBlind people give and receive information through touch. And touch is language. Touch is our birthright. That is our natural way of learning and understanding the world. Touch, again, is not an ethical issue. We'll talk about that again when I talk about attitude.

So the philosophy also emphasizes culture and community. And it talks about how communication is a two-way street. ProTactile is really for everyone. So it's for me, as a DeafBlind person. It's for my family. I have a son who has two dads and one mom, and we all use ProTactile with each other all the time. We all touch to communicate. It connects all of us. So my son and his dads are all sighted, but we all use touch, because it's a two-way street, and that's how we all connect.

ProTactile also supports DeafBlind people as a cultural group of people. So this is different than the medical group of people. Autonomy comes from owning our story and owning our identity, having that knowledge and that choice about how we identify ourselves and how we understand ourselves. So when you approach DeafBlindness in a medical way, you talk about vision-loss, limited vision, hearing-loss, problems with vision, vocabulary like that, that's really part of the old system. And I understand that a lot of things are set up to recognize that language, but I think that language supports isolation and keeps us separate by identifying the problems that we have.

So people who have this problem are separate from people who have this other problem. And they are unique because. And it keeps us in silos and prevents us from connecting with each other. So when we talk about community involvement-- I wore the wrong clothes, I keep yanking on my tie here. When we talk about community engagement and connections, ProTactile philosophy really emphasizes that this includes everyone, and it's a two-way street. Everyone is accountable for everyone else.

Do you want to add anything about the philosophy?

Well I'd just like to add that philosophy is really, it's how we live our lives, right? So you're going to live your life based on your auditory and visual senses, what you're getting through those, and you pick up things very easily. You're just exposed without even knowing it. Just to have that privilege and power, that's a part of that. And that sometimes conflicts with how we live our lives.

So it's not knowing the best for somebody else. It's about experience and exposure. And through language, and through receiving touch, we can have that social experience and then develop our own autonomy. I want to give an example. Let's show the chair.

OK.

So I'd like to show this example. It's just short and sweet example, a little role-play. Pretend that I am a sighted person. Doesn't matter if I'm deaf or hearing, but I have vision, I am sighted. aj is a DeafBlind person. aj, ask me where are the chair is.

Oh, OK. Hey, Jelica, I need a chair. Where is one?

Hold on a second. Stay here one minute, I'll grab one. And Jelica is going forward, finding a chair, and pulling it towards aj. Here it is, it's right here.

Oh, you brought it to me. OK, it's like you got that chair out of thin air. Wow, amazing.

Huh. Oh wow, maybe there's another way of doing this. But this is very common. We would suggest a change.

OK, I need a chair. Can you find one for me? Can you find one?

OK, wait, let's start all over again. Go for it, aj.

OK, I need a chair. Where can I find a chair?

Oh, well let's go find one. We can do this together. Here's a chair.

Perfect, thanks. I'm going to have a seat.

Jelica lead aj's hand over to the top of the chair.

That was better. Thank you. I'm just going to sit here, you keep presenting. So the point is that I am able to make a decision for myself if I know where the chair is. Right? Maybe somebody else is going to ask me where the chair is, and I will know the answer, because I just had that social experience, and I got the information through touch. That's me participating in this community. That's me knowing what is happening around me.

Exactly. So, hopefully, you can see those simple things lead to that social experience. But more and more, things are taken away from us without even realizing it, on the part of the person who's doing it. They think they're helping. And, really, it's not required. There's so many different kinds of experiences. Maybe there's many different chairs in the room.

I want to touch it. Through that, I can experience what the what the chair feels like. If I'm led to the chair, I'm going to have a different experience than if you just decide which one I want, and bring it over to me. So this is just one example that is simple, but hopefully clear.

It also means that we are learning from each other. It gives us an opportunity to do that. Instead of it being one way, where the sighted person is deciding everything, and I have nothing to offer because I'm DeafBlind, and I have no experience in the world, and I have no access to information. What we're practicing here is a two-way connection, a cultural exchange, and both of us learning and experiencing things, so that we can offer each other something.

Exactly.

And I'm checking what time it is.

We have about 10 minutes, aj. OK, next slide.

Just getting information about what's on the side.

So, again, I just want to highlight that we have shown you a little bit about building community through touch. That applies to any community. What we've learned, you can find that connection through touch. We mentioned Gallaudet University, and it's very exciting. They've collaborated and connected with the DeafBlind community in that area. The research at Gallaudet went ahead. And, at first, they went ahead and included the DeafBlind community, so that the community can provide that data that they need for their research.

And that's just one example of engagement. It's a co-creation of building community through touch. The communities involved, the researchers involved, and they work together. And that's a wonderful example. So hopefully you can learn from that model. And then, aj, you take the next part.

Yeah, I actually want to back up a little bit, if you don't mind, Jelica. So I just want to emphasize something important. So people think that ProTactile only applies to people in the signing community, and that is not true. Jelica and I have been teaching ProTactile for nine years, and anyone can benefit from ProTactile.

So when we're talking about community engagement, we're not just talking about the ASL community. OK? We're talking about everyone. And that's one of the really cool things about ProTactile. We work with hard of hearing, blind people often, and we have a lot of success stories from that population.

We work with children. We work with children with autism, who are also blind. We have great success stories from them. We work with people who speak and lipread, but are deaf. Adults, senior citizens, children, a whole variety of people.

So a really simple example is I have a grocery store that I go to near my home. And I don't really have to go there with a guide, or with a support service provider anymore. I can go in by myself, and the employees there know me, they know that when they see me they should touch me on the shoulder. They know how to communicate with me through gestures and through ProTactile. And that is huge.

My community is involved in my world, and it's all through touch. And none of them sign, I just want to emphasize that. The ProTactile is for everyone.

Exactly, exactly. So, again, what does community mean? Right? As a DeafBlind person, of course, employment opportunities are important. So you can think about the need for more and more DeafBlind teachers having a positive impact on their students. They can teach other DeafBlind students, because they can speak directly from their experience, and communicate directly in their natural language.

So as aj explained, the philosophy of touch is so powerful. And, really, it's hard to summarize all of this in such a limited amount of time. But it includes so many people. Everyone can get together and communicate through touch. In Lighthouse of Seattle, for example, or also in the hearing-blind communities who are there, as well as the hard of hearing communities, as well as the developmentally delayed communities.

Everyone is engaged and involved through touch. It solves so many problems, truly. For example, if aj and I are walking on the street and people step out of the way, or walking in our work environment. They don't just step out of the way, they touch our arms as we pass. We realize that there are people around us. It's, again, not living in that isolation, which is a wonderful experience.

The power of touch becomes communication and language, and that enables more language, and development, and accessibility. And anything's possible at that point.

And all of this work's against isolation.

And choice, right? DeafBlind people then have options. They don't have to be limited. There's a lot of benefit in sensory labs, but they don't have to be limited to that only environment, it's anywhere.

I do want to touch on resources, I mentioned at Gallaudet, but there's another resource I want to mention. Do you want to talk about discovery now? OK I'll mention it.

Sure.

So I want to mention Tactile Communications. This is the second nationwide service center for training DeafBlind people. And it involves everything. It's gaining their autonomy.

It's in Seattle, and it's run by DeafBlind people. And this is an example of that partnership that I was talking about. It's still run by DeafBlind people, but it involves and includes many people in the community. aj and I both work together to do this. I am the founder of Tactile Communications.

And we actually have someone here in Ohio who would be a great resource for you. Let me get to the next slide here. So Jason Herbers is our good friend. He's a DeafBlind man who lives here in Ohio. He has gone through training with Tactile Communications, he's a graduate of that program. He's involved in the DeafBlind community, and in interpreting, and he is here today, actually. He's sitting in the front of the room over to the left. So hello to Jason.

[APPLAUSE]

Hey, Jason.

Jason is a wonderful resource, and he is ready for all of you. I'm making a mistake, the college, it should be a university. So I just want to correct that. Very exciting. OK, we've come to the end of our time, and the end of our presentation.

In summary, I just want to say that this is a model. We came here to just show and expose you in the development of language. We really value that social experience through the family, and the school environment, and in the community. And, really, you can build community through touch.

And just as a last little mention, ProTactile ASL, we signed PT ASL, but the whole word is ProTactile American Sign Language. So I just want to mention that there is now research that proves that is a completely separate language. So it's not just visual ASL in the hands. But Gallaudet University has been researching it, and it seems that it is a separate language.

And so that's really exciting, because it's 2016. And we finally have a fully-accessible language for the first time for DeafBlind children. And so there have been a few experiments with DeafBlind babies applying this research, and it's really exciting. DeafBlind babies and children have full access to language for the first time. So that's really exciting.

Thank you for coming to this presentation and opening your mind's. I am really looking forward to being community members with all of you, thank you so much.

I also just want to add that that's how we create that sustainable world. Again, it's through culture. It's how we live, it's valuing our language, our lifestyle, our approach, and I'm excited to see that develop and continue in Ohio.

[APPLAUSE]

Hi, this is Julie. I just want to thank both of you so much. Again, we were thrilled to have you. And tonight I hope the last thought you have tonight is about autonomy. And getting excited about it, and motivated to give that to our learners. So thank you for coming from Seattle, for bringing your team of interpreters, it was wonderful. Again, thank you so much.

Thank you, Julie. This is how we show our appreciation, so you can feel our stomps through vibration. Thank you. 

2016 Ohio Summit on Sensory Disabilities

The 2016 Ohio Summit on Sensory Disabilities took place on Wednesday, November 16, in the Short North Ballrooms of the Greater Columbus Convention Center. 

The Summit targeted Ohio educational professionals who teach or support individuals with sensory impairments – including visual impairments, blindness, hearing impairments, deafness, and those who have dual-sensory impairments. Participants explored statewide initiatives, networked with regional partners, and helped contribute to the future planning for all learners.

The keynote address was provided by aj granda and Jelica Nuccio.

The 2016 Ohio Summit on Sensory Disabilities was presented and hosted by The Outreach Center for Deafness and Blindness and Assistive Technology and Accessible Educational Materials (AT & AEM) Center at OCALI.

Details about the 2017 Ohio Summit on Sensory Disabilities will be posted in late spring/early summer 2017.