Unedited transcript
Facilitating Successful Outcomes For Individuals Who Are Deaf-Blind:  Accommodations, Strategies And Resources

Dorothy Walt, Helen Keller National Center, Seattle
Cathy Kirscher, Helen Keller National Center, San Diego
Michael Brennan, Alliant University
John Reiman, Ph.D., DB Link

>> Good morning. This is for the deaf-blind conference. First of all if you need to move forward for any reason to move forward for the interpreters, feel free to do that now. If you need assistive hearing devices, let us know. They are available down in the office and also a noted on that later this afternoon, during the break time they will be testing those, so that's something you need, go ahead and let them know and they will test that for you. Also after the workshop we have green evaluation forms on the chairs. Please fill those out completely so they will help for the next time. They know what to change. And let's see, what else do we have here? If you need credits for coming to the conference, go downstairs to the main registration table and you can sign up for the credits there. And I think that's about all. Our first speaker today will be Dorothy Walt and she is the regional representative for the Helen Keller National Center and her office is in Seattle. So give her a good welcome. Thank you. [ applause ]

>>Dorothy:  thank you. Good morning, everyone. It's dark in here. I can't see who's siting in the audience but I think a few of you I already know from before in my region, I maybe met you last year or two years, five years, I don't know. But welcome to our all-day special session on how to facilitating successful outcomes for individuals who are deaf-blind. And we have a wonderful four -- well, I'm counting myself also. Four presenters today. I would like to introduce those presenters who are all knowledgeable and experienced about deaf-blindness. First I have Cathy Kirscher. She is the regional representative -- oh, yes. Thank you. Cathy is the regional representative for the southwest region for the Helen Keller National Center. And her office is in San Diego, California. She used to be the former regional representative for the northwest region in Seattle but she moved to California and I took up her old position. We have Michael Brennan who is sitting down there in the chair. He is a project coordinator for an affiliated program with the Helen Keller National Center at Alliant University in San Diego, California. Michael is a licensed mental health therapist for families and marriage counseling. And he will also be presenting today. And we also have John Reiman who is the director, D.B. Link from Monmouth, Oregon. I don't know if he's in the room right now but he will be coming in and presenting this afternoon. So we have a full day of wonderful information to share with all of you. We also have some stimulation exercise if you want to experience how to be -- what it feels like to be deaf-blind. You can put ear plugs and goggles and maybe practice a little bit. That will be this afternoon. If any time you have questions or you need clarification, please raise your hand and wait to be called on. We have interpreters standing with me or with Michael to give us visual information to tell us someone has their hand up. When you are called upon, or if you want to approach Michael or myself, please identify yourself first. We have difficulty seeing faces sometimes. So always identify yourself by name and perhaps where you're from. That will be helpful also. And one last thing I would like to mention is, we have a wide variety of communication modes being used in this workshop today. We will go a little slower pace so we have respect for all people who have different communication modes. So I would like to ask all of you to please be a little bit slower than normally so that the interpreters and the real-time caption person and people with FM systems can follow everything, the same way hearing and sighted people can follow. Okay? I have a funny story to tell you. I travel a lot on my job independently. I always have my white cane with me. I am too deaf to understand speech but I do have pretty good lip reading skills, except my vision is so bad right now I can't read lips very well. But one day I was traveling and there was an airline person who knew who I was because she recognized me. She knew I could read her lips and I was deaf. And she was walking with me from an airport terminal and we were walking together and I was using my cane, tap, tap, back and forth while I was reading her lips and she stopped me. And she pointed to my cane and she looked at me and said, does that help you to hear better? [ laughter ] no! I thought that was kind of funny. I think what I'm going to do now is turn over the presentation to Cathy. We're going to follow the agenda so when we have a break, please respect time and be in your chairs so we can go to our next presenter. So, Cathy. Thank you.

>>Cathy:  welcome, everyone. Can you hear me okay, those who are using -- anybody using FM systems in here? Raise your hand. No? Nobody's using. We're going to have a conflict with the room next door in a while with the FM systems so we need to know. I'm going to date myself. Way back in the before times I went to this little college in Monmouth, Oregon, and it was called Oregon College of Education back then. Anybody remember those times? You guys are all younger. Oh, see some here remember. OCE. Well, it used to way back before my time it was called Oregon Normal School so Oregon College of Education was my day. And I was in the Rehabilitation Counseling Deafness Program. And the coordinator of Disabled Student Services asked me if I wanted to go to a deaf-blind camp in Napa, California. And it was a two-week experience. And I just thought it was going to be cool to go to Napa, wine country. I think I just turned 21 not that much before that. And I was looking forward to that experience. What I didn't know was that it was going to hook me into deaf-blindness forever more. And one of the reasons I thought I knew deaf-blindness or I could do this deaf-blind experience is because my grandmother was blind. And she was blind from the most common cause of vision loss in older people which is macular degeneration. Md at your eye is the name sign. Macular degeneration, my grandmother lost her central vision and that vision helps you be able to read. It's your acuity. It helps you see colors. My grandmother, as most people who are, quote, blind, 90% of people have some vision even if they're legally blind. Only about 10% of blind population are totally blind. So my grandmother was one of those 90%. She had taught me how to do sighted guide with her but, remember she was hearing. And one of the things my gram would do is look at us out of the side of her eyes because she is good peripheral vision. She thing she would tell me I had dimples there your face and she would say I can't see your dimples anymore but I know they're there. I can see your shape. So I had grown up with my grandmother. So I thought I knew blindness. My brother-in-law at the time was deaf and I had learned to sign. I signed fluently. I was a part-time interpreter so I thought I had the blindness part and I had the deafness part. What I didn't know is when those two things come together in one person what that really meant. I had no clue. And so one of the first things we did on this trip down to Napa, California, from Monmouth was we stopped in Medford, Oregon. At a Mexican restaurant. And the woman that was with me, my one on one person, she was in her 60s. Very bright, very cool. Had very light touch. I thought, I'm doing this. This is cool. I'm sitting next to her. She read -- she had such a light touch. I could sign anything with one hand and she would get it. And most people just so you know, I'm dominant right hand. As are 90% of the population. Most deaf-blind people who use tactile sign read it with their left hand. So one of the things she told me in the car, in the back seat, I had to sight on her left-hand side so with one hand she's asking me, she was very in questionsive, asked me my whole entire life story and vice versa. And I told her, I said, we're stopping to eat. What kind of food do you want? And T.J. who was driving said what about this Mexican restaurant? And she said fine. She was in the car when I first got in. So we're driving to Medford. And we got out of the car, first thing she helped me understand was how to guide her appropriately. Shives used to telling my grandma there's a step coming. There's a curb. There's whatever there is. There's a door handle. Her I couldn't tell. So she told me things like, before you approach a curb, up or a down, stop briefly and I'll feel you go up and down by holding your elbow. So really quickly, she trained me. She was so great. But we get into the restaurant and, of course, she read Braille which only 10% of the population at this point knows Braille. And one of the reasons for that is that there's so much audio information, talking books, that kind of stuff. So one of the first things we always think about is, oh, you're going blind, learn Braille. It's almost becoming somewhat of a dying, you know, art form. But people who use it and need it very much need it. Emma knew Braille. Of course, they didn't have a Braille menu so she asked me to read her the menu. So the first thing on the menu was taco and I fingerspelled t-a-c-o-in her hand. She says sounds interesting what does that mean? What does that mean? How do you visually describe a taco? So by the time I got through taco, hard shell, you eat it like -- sprinkled meat, I was -- it boggled my mind. Just the taco. The next thing was enchilada. Okay. Yeah, what -- how do you describe an enchilada? She had never had Mexican food before. So by the time I got down to Chimichanga I was a lost cause and she finally got down -- said just choose for me. But one of the things she also said is that I like to eat with my hands. I like finger food. Becausia see. She was totally blind. One of that 10% who is totally blind. She couldn't see her food and she did the -- taught me how if you look at the plate as a time clock, you know, tell me my beans are at 12 o'clock, my rice is at three o'clock, my enchilada is the rest of the plate. Got that down pretty quickly but hearing people are social people. Deaf people are social people. While we eat we can talk whether we're signing or talking so I kept trying to slip my hand under her hand and give her some information or just chat with her. Finally she said, you know, Cathy, why don't you let me finish eating, I'll wipe my hands and then we'll talk and it's like, okay. That was her individual preference. Not all people, some people want to chat while they're eating. But you know, when she was eating, I ordered her, I remember it being very messy food. And I didn't order the right thing. Afterward she said I would have done better with finger food. That was her preference but not everybody's. So one thing is understanding the preference of the people you're hanging about. And anyway, during this experience, I knew at the beginning of it my feeling with Emma at the time -- I knew she was bright. She remembered everything I told her. But she didn't have very many life experiences. Like being 62 years old and never eating Mexican food. And coming from Oregon. We've got tons of -- nobody had ever taken her to a Mexican restaurant before. She just didn't have that in her repertoire of experience. Later on she ended up testifying in Washington, D.C. before congress on the older blind grant. I mean she is very bright. But had limited experiences in different things. She taught me a ton. She just died a couple years ago in Portland here. But she was like one of my -- I thought of her as a second grandma and I thought of her as also the person that really hooked me in to deaf-blindness. So what I'm going to talk about today a little bit is defining the population, looking at the different causes of deaf-blindness. And looking at the implications and one thing that would help me also is to know what the background of you all. And I would just love a show of hands, how many are involved in the field of deafness? That's like most of the room, 90% of the room. Got that 90% figure down. Anybody from the field of blindness? Two and Yvonne. A couple from blindness. Three from blindness. Anybody from the field of deaf-blindness? All right. One person.

>> trying.

>>Cathy:  she tries. We all try. We're learning. Anybody from just general disability field? Okay he, three or four people from general. So that helps. So one of the things because most of you are from the field of deafness we're going to focus a lot on the vision part because that's the part, I actually, to be honest with you, I think the deafness part is much more difficult to learn because of the communication. The blindness part is a significant piece and always, when there's deaf-blindness, hearing-vision loss together, significant impact in every aspect. So we want to hit on that very strongly. I have a larger chart on the hearing-vision loss population in the United States. I want to pass these around. One of the things that's interesting, there was only one study ever done, it was 1982. And what they found was that for about every 100,000 people, there's 346 of them who have some combination of hearing-vision loss. Okay. And the larger population are people who are blind and severely hearing-impaired. And blind again when I say "blind," that means legal blindness as well. It's not just total blindness. For every person in that category there's 169 people per 100,000. So one thing you can do is, wherever your home community is, how I got this is I called up the statistics, u.s. census, and the day I called it up last week I think there were 284 million people in the United States. This is on an I.Q. test so you should know the range. I'm giving you the answers. 284,000 people and simply divided so there's about a million people in the United States, give or take, who have some combination of hearing-vision loss. People who are totally deaf-blind, there's about 20 per 100,000. It's the smaller population. So we use the term "deaf-blind," this workshop was billed as deaf-blind, but what I want all of you to understand is really the larger populations, both people who are hard of hearing and have vision loss or blind and have hearing loss. That's the larger group. And more and more, we're seeing those people. Back in the before times and I like to mention, people who are hard of hearing didn't necessarily go to deafness services. And people who were low vision didn't necessarily go to blindness services. And they were always stuck in the middle. But where do I go? I remember being the rep in Seattle and advocating over and over, somebody would go with -- and we'll talk about etiology -- but they would go with Ushers Syndrome, which is a combination of both vision and hearing loss. They would go to the state services for the blind and they'd be told they're not blind enough so they'd go over to vocational rehabilitation and they were hard of hearing, and they'd be told they're not deaf enough. And it still happens. And so it's something I really want people to really understand that the larger group that we're really working with these days and they're coming in more and more for services, aren't people that are totally deaf, using sign language culturally deaf or totally blind. This is the bad part. There's good parts and bad parts. Bad parts for all of us. We all have aging eyes. We all have aging ears. One of the things that I learned many years ago, I love the resource on this, I was told that our best hearing ever, unless we were born deaf, our best hearing was when we were seven months old fetus in our mother's womb. That's you're best hearing you'll ever have. From that point on, toxins, ear infections, noise pollution, genetics, we all have aging ears. So these kind of presentations where you think about maybe yourself, you think about your aging parents, you think about people that you work with out in the community, we all have aging ears. The other bad part is we all have aging eyes. Our best vision was probably between the ages of six and nine. And at that age your eyeball is totally the size that it's going to be. My little boy turns nine today. So from this point on, his vision's going downhill. That's the bad part. The good part is that part of what we're talking about is that the communication, the awareness of the combined hearing-vision loss, the technology all helps. So I want to go through a little bit just on the prevalence. Does anybody work with seniors?

Okay. One person. We all have seniors in our lives. Somewhere in our family. The problems of vision loss, about one out of four people between the ages of 65 and 74 have significant vision loss. 39% for ages 75 to 84. And for people over 85, 52%. One out of two have significant vision loss. One of the things that happens to all of us is that we all have yellowing of the lens. I used to live in Florida. And I'm sure a lot of you, some of you who work with seniors, have heard about the blue haired ladies. Like you've seen ladies, older women who should have white hair but it likes, it's tinged blue. Part of the reason that happens as we age, we have an opacity over our lens. And one of the things that happens to every one of us is yellowing of the lens as we get older so some -- I used to live in Florida and there were a ton of blue-haired ladies as we called them but I didn't understand what that was back then. There's supposedly a rinse that you put on your white, you know, graying white hair to make it more white. Well, what they see as they rinse is yellow. And they're trying to yet that yellow out. They rinse more and more until it turns blue. That's how you get blue-haired ladies. So the next time you see a blue-haired lady walk around don't make fun of her. Just know that it's happening to you, too. [ laughter ] the sad part on the yellowing of the lens, and I'm going to pass these around, I have some little candies here. Don't eat them because they've been touched by my children and all of you. But what is in this little case of candies are different colors. And I want you to pour some in your hand as I'm talking. I want you to put on the lenses and I want you to pick out the green one. I want you to pick out the blue one with yellow lenses. I've been told Viagra is blue. And so if you have yellow lenses, and you didn't know your heart medication was green and the Viagra was blue, you see how it starts getting -- the other thing that happens is as we age, a lot of us have more difficulty with our hands. So I'm also going to pass around these big old honking gloves. They simulate -- they simulate arthritis is what they're supposed to do. I'm going to pass around some gloves. Yeah. And I'm going to have you open -- you want each size? We need to introduce Nancy Godfrey. This is Nancy Godfrey. She works in our New York Rehabilitation Center at Helen Keller. She is the coordinator of all the affiliate programs of which we now have 49?

>> 47.

>>Cathy:  I was so close and the Commission for the Blind that Vaughn works at here in Portland is an affiliate of the Helen Keller National Center. Nancy travels all over the country. And she came in to help us out for this. So she's going to pass around -- there's one more thing. As she have on the arthritis gloves I want you to look at this little -- first, open this little case. It's a little sewing case and I want you to think about, you don't have to do it but I want you to think about threading a needle with yellow lenses, with arthritis. My grandma turned 100 and lives alone but she can't thread a needle. She can't see her medication well anymore. She's had cataracts removed at age 90. She got busted on that because I drove her up to Seattle and we were passing the Tacoma Dome right off I-5, and she looked at it and she said, Cathy, is that Mt. Rainier? And I said you are so busted, grandma. That's it. You're getting your cataracts removed! [ laughter ] the other thing I'm going to pass around with the yellow lenses, Nancy, it's a newspaper. And in the back of the newspaper there's a map. It shows water. It shows a green area. And you'll start to look at how difficult it is as we age what happens. And whether you're working with an older population or not, it doesn't matter. It's happening to all of us. The other inning that happens to all of us is that we all develop cataracts. Usually by age 50, cataracts are starting. Everybody looks concerned like, oh, god! How much time do I have left? I'm going to pass around some cataracts. Cataracts cloud your vision. And my husband who is significantly older than I am, asked me one day while we were driving how do you know when you're start go to get cataracts? And it was night. And I said, well, one way is that an approaching car, you see the headlights, there's like a halo around it. And he said, you're lying. Obviously, he saw a halo around the lights coming on to us. His cataracts, I love this term, aren't ripe. Whoever developed that was -- they're not ripe enough to be removed yet. But -- but for people who have significant vision loss, for different causes, one of the things that we when I about is taking cataracts sooner. Not waiting until they get, quote, fully ripe. So that's something, and cataract surgery is one of those big deals. My grandma still remembered and why she was nervous at 90 she still remembered 20 years before when her best friend had cataract surgery and in those days you had to be flat on your back for ten days after surgery. Don't move. And she still remembered her best friend going through that. These days, especially where I live, southern California, it's like a conveyor belt and people having cataracts removed. And so things are different these days. But we do recommend it earlier these days than later. I already talked a little bit about the most common cause of vision loss for older people after age 55 is macular degeneration and I'll pass around some goggles that show macular degeneration. Nancy already has them. One of the things I want to tell you about this little thing right now that we're doing, you will have a chance at break time in the afternoon. If you want to actually have a simulated experience for -- it's optional. You don't have to do it. But it's one of those things that we recommend. The other things that we recommend is probably not doing it totally deaf, totally blind but doing it low vision. Because most of the people that you're going to work with are really low vision, not totally blind. The prevalence of hearing loss in older people, one out of three people after age 65 has significant hearing loss. 45% after age 75 years old and 62% after age 85. And this is something I think especially back in the before times where they didn't have so much hearing protection as they do now, you have a lot of especially older men who worked in factories, a lot of noise-induced hearing loss. Any of you work with people who are just hard of hearing? A few of you? Tell me some signs and symptoms of hard of -- somebody being hard of hearing. And one of the reasons I ask this is that it's usually five years from the time that family and friends start noticing that a person is hard of hearing before they actually go get checked. So what are some of the signs and symptoms you can think about for a person being hard of hearing?

>> they talk real loud.

>> they talk really loud.

>> they answer questions you don't ask.

>> they answer questions off the point that you don't ask.

>> they look you right in the face.

>>Cathy:  they look at you very intently. Maybe they are speech reading. Dorothy?

>>Dorothy:  I'm Dorothy. I was born hard of hearing and my family didn't even recognize I was hard of hearing until --.

>>Cathy:  Dorothy said that I was born hard of hearing, the teachers are the ones that told my parents. And hard of hearing children are very hard to diagnose because they catch some things, they don't catch others. They usually catch things in a quiet environment when there's noise around, they don't. So it depends on the timing, also. And the noise around. Some of the things we look at for signs and symptoms, asking people to frequently repeat. Inappropriate response, which was said. Difficulty understanding in groups is a big one. When there is other noise around. Puzzled expression when they're trying to hear something. I can always tell if I'm working with somebody hard of hearing and they get that glazed over look in their eye and I just know they didn't get it. Intently watching the speaker's mouth. Turning one side to hear better. Now, back in the old days they had those big hearing -- like they looked like antler or something that came out. Those actually really worked pretty good. They had huge ones back in the old days but they worked pretty well. Some of the signs and symptoms of vision loss, anybody have some clues if you're working with somebody or think of somebody in your family? What would be some of the signs and symptoms that you would think about? Go ahead and shout them out. Bumping into people or things.

>> bringing things closer to you.

>>Cathy:  bringing things closer like to bring. Or holding them far away. That's kind of my joke. Our business cards are on the back. On the back of my business card it's got large print. And it's not for people with low vision. It's for people over age 40. Because those, between the ages of 40 and 45, something like 80% of us need reading glasses. So that's another thing that happens to our aging eyes. Some of us get that experience before others. But I'm too vain to wear my glasses all the time. But I do have them. Any other signs and symptoms you can think about for vision loss? One of the things is difficulty adjusting from light to dark or vice versa. I did an internship at the Oregon School for the Deaf in Salem. And I worked in the sixth grade classroom and there was a little boy in that class who every time he left the brightly lit classroom and he went out into the dark hallway, he would do what we now, what I think of it as we call it buying time. He bought some time. He went outside the door, he fumbled with his books, he fumbled with his wallet. What he was doing was letting his eyes adjust. And what we found out years later was that he had Ushers Syndrome and one of the first symptoms of Ushers Syndrome is night blindness. And difficulty adjusting. But at the time we're like move on, Mark, get going! We're out of here. He couldn't. He didn't know everybody else didn't see like he saw and I think it's true for most of us who put on glasses. We think everybody sees the same way that we see. Until we put glasses on.

I probably should also just tell you since I don't have a slide on it that definition of legal blindness. And for somebody who has perfect vision, we call that 20/20 vision. For legal blindness, it's 20/200. And in layperson's terms what that means, let's say -- and I do for distance vision, my vision is 20/20. So if they're 200 feet away I see a cat walking in a field. A person with 20/200 vision would have to move up to 20 feet to see that same cat. That's what 20/200 means. They still have vision. 20/200 is a lot of good usable vision. I also means that that person either legally blind, that's vision corrected. That's their best corrected vision is 20/200 or worse. I was at an IEP meeting recently for a young girl and her vision in one eye was 20/2400 but she still had some vision in that one eye. Not much but she had a little bit of vision. The other eye was something like 20/1200. But when her mom pulled up in her white van -- she was also expecting the van to pull up -- I said do I need to get out and tap her? And she said, no, she'll see it and she did. But what I would be able to see in comparison, 1200 feet away I maybe see a white van she would have to move up to 20 feet to see it. The other thing is that she would have to probably have good light. She would have to probably not be fatigued. It would have -- there's a lot of factors that go into what a person can or can't see. This room isn't particularly very light. And so that's an issue. I know Dorothy made a big point of asking for the brightest room, the brightest wattage that we could get. But it's -- if you have low vision, and you have difficulty adjusting from light to dark, this room isn't particularly bright. Another symptom, changes in reading habits. And it was one of the ways that we knew that my grandmother wars -- she used to love to read Reader's Digest and my mom every year ordered that subscription to "Reader's Digest" and she stopped reading it. And we didn't know why well, what she didn't want to tell us was she couldn't see it anymore. She couldn't see it even with her glasses. Her central vision was going. Need for more lighting. And I got to tell you what this is another thing that happens to all of us. If we all thought about better lighting, we'd probably do better at our offices. We all, again, have aging eyes. The problem where I live is my electric bill last month was $450 and I don't even have air conditioning and that's - you know, so it's like we're trying to conserve energy and both my husband and I, for reading tasks, need more lighting so what we do is use the goose neck on my desk. I have a goose neck lamp that has direct light on to what I'm working then I don't need all the lights in the whole room turned on particularly for my needs. But what you all need to think about is when you have somebody come in your office who's maybe older or has identified vision loss, you need to think about the lighting.

Decreased depth perception is another clue. Tripping over curbs, not -- using your foot to shuffle to find a curb, to find the step. Light or glare sensitivity is a big one especially where I live. A lot of people, when I lived in Seattle, loved Seattle. The people that had Retinitis Pigmentosa because they had problems with glare. Seattle's a dark, cloudy place most of the time as is Oregon sometimes. Southern California is bright and glaring and it hurts your eyes when you have significant vision loss like that, it hurts. A lot of people wear visors, you know, we recommend a lot of visors but they have to be cool visors. Back in the old days we gave everybody those UV -- that you would called no IR sunglasses, ugliest things you ever saw so what we're trying to do is get parents to give their kids, get sunglasses but maybe them -- make them cool sunglasses. Don't give them those big honking "look, I'm blind" sunglasses. Be sensitive to that. And I think that's true for all of us. Increase sunlight also damages your eye. Chris Evert, the tennis player, recently came out and said that she has major eye damage from throwing the tennis ball up. She's from Florida. Looking into the sun, smashing the ball. She has significant vision damage from all of those days. I always look at those tennis players and think, why aren't -- because when I play tennis I wear sunglasses. It might be -- I don't know what it is. But I don't know how they do it without. Another symptom is discriminating colors. Anybody color blind here? It's more of a male trait than female but difficulty in the blue-green-violet range. Maybe having somebody that you live with, somebody you work with have mismatched colors. Changes in grooming habits. And that might be something as simple as seeing your grandma wearing a blouse with spots all over it and thinking, you know, grandma used to be so meticulous, she might not be able to see those spots. So that might be something that might signal maybe she has cataracts going on and hasn't been checked. We recommend all of us have vision checks every two years. So if she hasn't been checked, that's something to look at. Changes in eating habits. And that's my Emma story that she liked finger foods better than trying to find food on her plate. Difficulty recognizing familiar faces. And one thing I do, even with Dorothy and Michael, Michael and I work in the same office. When I come in to his office, if he's not expecting me, I'll give him a tap on his desk so he feels the vibration and when he looks up at me I give him my name sign, c.k. then he doesn't have to play that "who am i" guessing game. People with vision loss hate that game. "hi, you know me. You met me before." and they're going, "give me context, give me something." so it's just something out of sensitivity. I want to talk a little bit about the four groups that we generally work with. And because most of you work in the field of deafness, the other Thing I want to tell you is that in the back, we do have the same power point presentation in the packet. So if you didn't get it every pun of the presentations are already on everything that you see up here is already written out for you. So if you're looking at people that are born deaf, or, yeah, congenitally born deaf and become blind, we look at issues of Ushers Syndrome. Number one cause of hearing, combined hearing-vision loss and most of us have, in our work in deafness worked with somebody with Ushers Syndrome. Four to 6% of people born deaf or born hard of hearing have Ushers Syndrome. The hard thing for me is that it's still state schools for the deaf, mainstream programs, don't routinely test for Ushers Syndrome. And so we still get people in their 20s having difficulty and all of a sudden, boom, oh, by the way, you have Ushers Syndrome. The earlier somebody can be diagnosed, the better. The vision loss is from Retinitis Pigmentosa, R.P. at your eye. And the first symptom is night blindness. I worked with the coolest guy when I was rep up in Seattle, in Alaska. And this guy was 16 at the time. And if you've ever been to Alaska, or even down here, they have beautiful night skies. And they have the northern lights, that aurora borealis dancing across the sky. I've only actually seen it a couple times up there so it's not all the time but his friends, this one particular night, said, wow, the northern lights are really kicking in and he went outside, he had never been able to see stars. That's one thing. So that's another clue that something was going on with his vision. But he didn't know what it was. So what he did was he went out this particular night, he got his parents' video camera and he videotaped the night sky. And he took the tape, he brought it in the house, he put it in the VCR, the room was brightly lit, his eyes were adjusted, he could see the TV screen and he put the tape in and sure enough, on the tape, he could see the northern lights. He could see the stars up in the sky. And at that point, he told his parents, something's wrong with my vision. And that's how he was diagnosed with Ushers Syndrome. But again, a lot of people, when they have significant vision loss, they think everybody sees that way. Except if it's something like, wow, look at the stars tonight, and you're looking up and you're seeing a black sky. And actually, that happens pretty young, nine or ten. The youngest kid I've ever worked with before actually was from here in Portland. She was diagnosed at age two. His parents recognized at age two that he wasn't seeing well at night.

The hard part with that story was that he was born deaf, so he had Ushers Syndrome Type I and at the time when I met him he was going to the Tucker-Maxon Oral School. So here he is learning to speech read, knowing that his vision's going down. That was real tough for me. A lot of you are familiar with the John Tracy Clinic. They have a taught parents all over the world. John Tracy is a young man whose father was Spencer Tracy, the actor. John was born deaf. His parents had a lot of money. They set up this clinic for oral training. Turns out years later, John was diagnosed with Ushers Syndrome. So all those years of speech training, at age something like 40 or 50, he had to start learning a visual sign system. Very difficult to learn a visual language when you don't see. So that's one of the issues why early diagnosis is very, very important in terms of Adaptations you can make. The next symptom of Ushers Syndrome is tunnel vision. And it's vision peripherally coming in. The thing that was tough for me and if any of you try the simulation later, I always thought of the vision just coming in from the side, that I couldn't see on the sides. We have 180 degrees vision. One of the things that you should know that in almost every state, they don't check your peripheral vision. For the definition of legal blindness is when you're vision shrinks to 20 degrees or less, you're now legally blind. I think Michael shared with our group recently that his vision is down to under 10 degrees. And he said yes now. Dorothy, do you know how much of a tunnel you have?

>>Dorothy:  it's less than 5 degrees.

>>Cathy:  Dorothy has less than 5 degrees of vision.

>>Cathy:  if you even look through the fist of your hand one of the things you can see is that if somebody's really close to you and signing, you're not going to get it. But the farther you are away the bigger your outlook, your vision. So that's another thing that happens with Retinitis Pigmentosa. You can have RP without know form of deafness. We know a lot of people who have RP. But will it's coupled with hearing loss it's called Ushers Syndrome. Okay. People with Type I are born deaf. They all have RP so that's one thing. Type one, born deaf. Also have vestibular damage which means the organ that helps them balance. Everybody's going, oh one year old, are they walking yet? I had a late walker. She walked at 13 months and I remember thinking like, get up and walk already! But if audit child that didn't walk until 18 months, or if you years, but again a lot of these kids aren't diagnosed. Their parents just say, oh. They like to scoot around. They get around faster crawling. But it's because they don't have that balance organ. It's messed up. People with Type II, which is what people Michael has are born hard of hearing. One of the difficulties with Type II is they say you're hearing should stay pretty stable. But what actually happens when somebody starts losing their vision, they become functionally more deaf. They're losing all of their visual cues they're used to, the speech reading, the point is, whatever they're used to hooking into so you become functionally more deaf. The other thing that happens is our ears are aging. And so you become harder of hearing anyway. People with Type III which is what Dorothy has usually become profoundly deaf by age 40.

>>Dorothy:  13.

>>Cathy:  you were age 15?

>>Cathy:  Dorothy it happen to do her at age 15. She was born hard of hearing and became deaf at age 15.

>>Dorothy:  right.

>>Cathy:  those are the three types of Ushers Syndrome. More and more we're seeing people coming in for services, even in deafness, with Type II and Type III. And I got to tell you something because I don't want to forget to say this before I run out of time, when somebody comes to me and they have Ushers Syndrome, I always have this conflict. Do I refer them to a rehab counselor for the deaf, an RCD or do I refer them to an RCB, a rehab counselor for the blind? 99% of the time I go blind. And even though communication is the hugest issue, it is the issue, when you have somebody with both hearing-vision loss, the reason that a lot of us in the field go for the rehab counselors for the blind is because they're used to spending the money on the technology. They're used to sending people for training. They know the value of it. Sometimes the RCBs are like go get the large video or visual display on your TTY. It's free from the state. What else would you need? And I'm making light of it in a way but I want you -- because it's a huge issue. It's a huge issue. I was in a workshop recently and an RCD in San Diego stood up and said, you know, for our closed 26 cases, our case closures we spend about $4,000 per consumer. And I was thinking, and then her next comment was we spend $5,000 for a case that isn't successfully closed. And I'm thinking, that doesn't -- that's just like a drop in the bucket! With the population that I work with. It's nothing. So I'm sitting there and I'm thinking, that's part of the reason, you know, I'm working in different states now. Maybe things have changed in the northwest. I've been gone five years. But that's part of the reason. And it's part of the reason I want to hit you guys up to really understand. When a person has both hearing-vision loss, technology is huge. Training is huge. That's the implication that you guys, if nothing else that you walk away from this knowing that it's huge. And that's why a lot of times we send them over to the Commission for the Blind, because they have, they know the value of the technology. And when we show it to you later, and show you a little Braille -- Braille display printer that hooks on to a computer, that cost $10,000 just for the Braille, you go, oh, my god, just for that! That's not even counting the training. I know a lot of you who are supervisors or who are being supervised, they deny it. They'd say, well, this has to be -- we have to get people up and running on that. On the technology. Because when you need it, you need it. Some other types of vision loss. We talked about already macular degeneration. Diabetic retinopathy especially if somebody developing it as a juvenile. It offer leads to vision loss. Cateracts which we all develop. Glaucoma is a huge one. That's another reason after age 40, all of us should be getting checked every time you get your eyes checked you should be tested for glaucoma. It's one of those sneaky kind of things that you don't feel it happening. Retinal detachment. At 17 he was chopping wood, we lived on a farm in Salem. Piece of the axe flew up and hit him in the eye. Detached his retina. It was successfully reattached but that experience led him into the field that he is in. Another one is optic atrophy. O.A. at your eye is the name sign. One of the things for this group, people born deaf or hard of hearing is a transition from visual to tactile sign. And one thing I want to tell you guys is that touch is so important in the field of deaf-blindness. It's everything. We hug a lot. We touch a lot. And it's not necessarily something that everybody's comfortable with. It's not necessarily people that are deaf are comfortable. It's kind of scary. It's like I know Michael, I've seen him reach out his hand in a dark place, he can see somebody visually right now. But I've seen him reach out his hand and people pull their hands away from him. People in the field. Yes. Michael said yes. Yeah.

>>Dorothy:  Wait. I missed something. Who was talking before? Oh, okay. You stopped. The interpreter stopped. I wasn't sure what was up.

>>Cathy:  Dorothy wasn't sure which one of us were talking. Michael just signed yes. Yes, it's true people pulled their hand away. But it's also a huge transition for people. It's not an easy thing. You're used to watching somebody sign. And all of a sudden going to this. It's hard for me, too. I have to think about it all the time and things that I usually do with expression, and head nodding, head shaking, whatever. And I have to remember to do it in my hand. What I have to remember the very most is it's better because I can sign as fast as anybody, it's better to be slow and clear than it is to try to rush through it. Especially when you're relying somewhat on fingerspelling to make sure it's clear. A lot of people just use one hand. Well, we have a dominant signing hand, usually our right hand but we also have a helper hand. That's the sign for help. But when you're only getting this and they're not feeling this necessarily, it makes the sign somewhat different so a lot of times I find myself clarifying my sign. If it's not an obvious sign. Another thing that people often do like the sign for fine is -- this on your chest. Sign for mother. Your hand on your chin. Sign for father. A lot of times when people first start out doing tactile sign with somebody you have a tendency to duck your head so you have somebody's head on your hand and you might be signing "fine," but you're ducking your head down and "like are you signing "father," "mother," it's unclear. So often I find myself with somebody who can read fingerspelling gives them this sign but if it's one of those confusing kind of signs like "fine," "mother," "father," I might add in "mother" finger spelled.

Personal adjustment issues. I'm going to leave that to Michael because he did -- but one of the huge things I'll talk about is the transition from the deaf community into -- what? Into deaf-blind community? There is a deaf-blind community in Seattle. There's one in Washington, D.C. there's one in Boston. There's not one in Portland. There's not one in San Diego where I live, a community of deaf-blind people that hang and commune together. There's not. So there's this transition into this abyss often. And it's something that pretty big. When you're talking about personal adjustment. Also people in this group, because they have deteriorating vision often, usually it happens in their 20s and 30s where their vision really goes down. 20s and 30s, we're usually just getting into our careers and trying to move up that ladder. That's the point that they're going to have to be going, oh, maybe this wasn't such a good Job choice. Huge issue for people. So helping them get into and find the right job choice for them, given their vision loss, is very critical. Another thing for you all that sometimes people don't think about are the independent, the ILS, independent living skills. One of those is just communication. There's no book, there's no training on how do you start learning tactile communication? If you have deteriorating vision, how do you start practicing that? Helen Keller, our center in New York, people have plenty of time for practice there but not everybody wants to go out of their home community. So it's finding options in people's home communities which is always our first choice. Another thing is personal and home management. One of the things I just learned just this past week in California, the gas and electric company, if you call them, will come in and put high marks on all of your appliances. I didn't know they did that. A rehab counselor for the blind, one of my best resources, told me that. He told me a person just came back from training and said now that I know all this cool stuff I want my oven marked with a little dot on 350. I want my microwave high marked -- she still has some vision. The gas company, they'll come in and mark everything for you. But it's those kinds of things for those of us who work in deafness that we don't think about that are critical. I have people that only eat microwave food, period. Microwave or fresh because they're afraid of using their oven. They're afraid of using their stove. They don't feel competent. And when you start losing that competency, you started eating only microwave food, health issues come into play as well. Another thing is orientation, mobility training. One of the things we do in deafness that we work with somebody with low vision, is we think Braille and cane. So we'll send them for cane training, we'll send them for Braille. Those are the two scariest things for people. You put a white cane in somebody's hand you might as well tape the word "blind" across their forehead. And again it's one of those adjustment issues. A lot of people even with training, they have their cane but they have the foldable cane and it's on their belt or it's in their backpack but they don't necessarily have it out using it. We develop things that Helen Keller and other places, this is a card that says "Please help me cross the street. I'm both deaf and blind. Tap me if you can help. Thank you." You know what? It would take a lot of guts to be standing on a street corner waiting at Multnomah and Broadway, in downtown Portland, holding this out. That takes some guts to do that. And to get somebody to that point is one of those things that we want all of you all to understand. But also to help somebody give their -- get the appropriate training for it by somebody competent.

Another big one is people who are born blind and they become deaf. I want to talk about some of the causes of that. One is just again the natural aging process. Presbycussis, we all have aging ears. Diseases like mumps, meningitis. I was called in to a case several years back, a young guy was in the gulf war. I think he was 20 years old. And he developed meningitis on the trip first week out. I didn't know this but when you're out for six months on a ship you get sick, you either get well or you die. They don't bring the ship back in for a young guy with meningitis. So he developed meningitis. He became totally deaf, totally blind. That was one of the things that happened to him. His mind was still iNTACt. And what they were trying to do was find what kind of communication system they could use about him. When I met him what they were doing was printing on his forehead. I mean how -- you know, unobtrusive is that? They didn't know anything else. They were doing the best that they could. And so, you know, another person I worked with later on was from Alaska. Older woman, became deaf-blind at age something like 92. And she was from a group called Athabaskan. I think it's spelled just like it sounds. It's not a written language, Athabascan. They couldn't do anything. They didn't know what to do with her. What they started doing with letter to give her some choices in her life was that she had certain preferences. So they would hand her a can of pop or a glass. The glass could be water, milk, orange juice but the pop she knew. That's how they started giving her choices. So we started using symbols for her to make some decisions in her life. Otherwise she was living in a nursing home and things were just handed to her. But that's one of the things that happens with this group. Diabetes is another big one for causing both hearing-vision loss. Kidney failure. Noise-induced hearing loss. I saw a young guy in the streets of Portland. I don't know what street, recently, just this past week. Using a jack hammer and I swear he had no ear protection. And I thought he's going to be coming to see us really soon like way sooner than he would think about. There's also a group on the internet which I think is funny now, the aging rockers. And one of the guys from Rolling Stones, I think Keith Richards, is it, that's hard of hearing from all those years of noise-induced rock and roll. Trauma is another thing that can happen and chemical toxins. I had a guy who had deaf-blind in San Diego from ingesting -- actually I think he had a crack cocaine pipe blow up in his face is what happened but he lost his vision and his hearing.

Genetics is another thing. Some of the implications for rehab, a lot of this group already knows Braille. But again, if they're part of that 90% that isn't learning Braille, and they're relying on talking books and audio information, this is, in terms of receptive communication, how they're going to receive communication from you, I'm going to leave this part for Dorothy because she is going to talk a lot about manual communication and developing but it's a huge issue for that group. Personal adjustment issues, going from a lot of people consider themselves in the blind world and all of a sudden they're traversing on the fence, am I in the blind world, the deaf world, I'm up here in the middle. Again, jobs-career possibilities. When you started with just blindness, and then you develop hearing loss again, you may need to look at being in a quieter environment using assistive technology. And retraining. It's something as simple as, I did have a cup up here but it's something as simple as blind people a lot of time will pour water into a glass and they'll know -- thank you -- they'll know that the glass is full by the sound. Well, when you start losing the sound, then, how do you know? They have some devices these days so cool, you put it on, clip them on the glass and it makes a little beeping sound. The problem with the little beeping sound, it's the high frequency. A lot of the talking watches, female voices. High frequency. So a lot of people when they develop hearing loss develop hearing loss first of all in those high frequencies. Women's, children's voices go. Those high beeping little noises are the first to go. So it's retraining all of this stuff that they learned already in a different way to incorporate the combination of the hearing loss.

These are people, this group are people who become deaf-blind and actually I should have talked about the young guy with meningitis in this group. Trauma, accident and war. We still get a lot of different things in that group. People with Usher II and III also fit into this group. A lot of them went to mainstream regular school. They consider themselves, quote, hearing sighted and as their vision and hearing deteriorates then they become late-deaf-blind. Again, one of the issues that comes up a lot is, if we're not telling them, oh, go learn Braille, we're telling them go learn sign language. Sign language isn't an easy thing to learn as most of us know who learned it as a second language. Those of you who learned it as a first language are luckier. They did a study in California recently on how difficult languages are to learn. Spanish is one of the easiest languages to learn. They rate them. Japanese was way down on the far end of being a very difficult language to learn. Sign language was right down there with Japanese. So, you know, for years I've been use that's correct when people ask me, how difficult, how fast, you know, there's a misperception that you can learn sign language pretty fast, it's right down there with Japanese. And I still, after 25 years, I still feel like I'm learning it all the time. I'm still in that phase. And again, one of the things about learning sign language when you have poor vision is, it's a visual language. And you're asking sometimes for people to learn it after they're totally blind. And learning a visual language when you've never had any context with it is very difficult.

Personal adjustment issues are huge. And job and career. Again, all of the independent living skills training. A lot of this group is distinguishing to immediately go to tactile signing or tactile, some way, I have one person that work -- lived here in Portland who her preference was to use a Braille system on her hand. So she would wanted me to do the Braille dots on her hand instead of doing a print on a, she wanted the dot for a. She wanted the dot for b. So if I met her I would have my little cheat sheet of Braille. I'm not that great in Braille and I'd be going, hi, this is Cathy and what I found myself doing is closing down a lot, because this group has speech. This group didn't, they were born hearing sighted. And so they're always going to have their speech. They're going to be able to talk to you. But it's getting information back in is what is difficult, receptive.

One of the most difficult groups, does anybody in here work with people with developmental disabilities? One, two? A couple? This group generally, if you're born deaf-blind, you also have some type of developmental disabilities that you are also dealing with. The biggest cause for this group right now is congenital rubella syndrome. Most of you all know there was an epidemic in 1963 through '65. I've heard anywhere from, we used to say 6,000, now we say 20,000 children were born deaf-blind during that two-year period. One of the things for all of you, these guys are now in their mid to late 30s. And we're finding them coming back into the rehab system, coming back into all of our lives. And usually, it's for late manifestations of rubella. And it's something that when John Reiman talks this afternoon about resources, that I think we all need to really study up on. Some of the things that happened with somebody that was, became -- maybe just started as deaf from rubella and some of the things that can happen, the visual problems that can come up later in life. Because a lot of times these guys don't have a way to tell you, my eye hurts really bad. I hate this story but I'll tell it anyway. A young guy I worked with at a psychiatric hospital, rubella, had eye pressure so bad but wasn't able to tell us, "my eye really hurts," he removed his eyeball. And that's how he got diagnosed with glaucoma. And glaucoma happens with this group more rapidly than other groups. But all of the things that are up here, visual loss, auditory problems come up. One of the things related to this is rapid aging. This group as adolescents, we saw them going into a late adolescence where the young women weren't starting their periods until they were 19 and 20. Now what we're seeing is like this reverse. They're developing, a lot of times they're very small and developing kind of the pot belly, some of the things that are going on is more after rapid aging which includes vision loss and hearing loss. So one of the things that comes up on here that I always tell people is to really pay attention to the etiology of the people that you're working with.

CHARGE syndrome is another one that comes up. And I'm not going to talk a lot about it because we have resources for it. We'll talk about the resources later on. Premaurity. When you see these women having several small babies being born and they're born premature. I immediately go to hearing-vision loss. Genetic problems, birth trauma comes up. Medical involvement issues. Go ahead.

>> I work in the school situation and we have children with CMV.

>>Cathy:  cytomegalo virus. One of my stepsons was born with that and they never heard of that before that. So CMV is another one, this little guy's only four years old. Right now, he's only has deafness. But probably of everybody I've ever worked with in 20 years, the most severely disabled in terms of physical and everything. The young man was from Seattle. Had CMV. So that's another one that probably should be on the list. I'm not going to go through a lot of these that I have practical tips but I want you guys to think about something. I'm wearing a dark contrasting color. When I work with somebody with hearing vision loss, this isn't -- I'm a spring. I'm a spring. I'm supposed to wear Easter egg color clothes like pale blues and -- but because I work with people with hearing-vision loss, if I wear a contrasting color to my skin tone they can see me better if they have some vision. Again, 90% have some vision. Lighting's a big issue. Dorothy's going to talk about some of these. Signing space. I'm not sure I even sign normal anymore because I sign in a smaller space. So when I meet somebody who's just deaf I don't like -- "hi, my name is Cathy". I'm signing in a smaller area. I'm not going to go through a bunch of these because time's running out but I want to go through my last recommendation. Dorothy? Okay. Two minutes.

Etiology, always ask for feedback from somebody that you're working with. What they can see, and what they can hear if they have some hearing. Find out about the etiology. Like if you've never heard of CMV before today we're going to give you resources before the end of the day to find out more about that. I always -- I get calls from rehab counselors call the time saying I'm referring somebody who's deaf-blind. My first question is do you know the cause? 90% of the time people don't. So it's very helpful for me to know the cause. Not that I'm stereotyping everybody who has CMV is this. Or everybody who has rubella is this. But it helps me a lot to know that. I always ask for environmental, how I can set up my own environment. If you have people come in to your office ask them what would help. Would it help if they wore a contrasting color?

Transportation is a huge issue. Can you do home visits? You know instead of just sending this that letter out and saying you have an appointment at my office at ten o'clock on Thursday, think about that before you send it to a person who can't drive anymore.

Denial is the last thing I'll talk about because I think that we use that term too much, that we as professionals say, oh, this person's in denial. They're not using a cane because they're in denial. Usually there's a reason that they're not picking up a cane. Or they're not learning Braille. And what I try to help people understand is, get to the bottom of it. Find out what the issue is. Is it the identity issue? Is it that Braille's a difficult thing to learn and you have diabetes and you don't have feeling on the tip of your fingers? Find out what the larger issues are. And on that note, I'll leave you with a quote from Helen Keller. She said, "the best and most beautiful things in the world cannot be seen nor even touched but just felt in the heart." and I believe that very strongly. It's such a positive message. I get so inspired by the people I work with. And on that note I thank you for your attention. I'll be back later to talk about technology and I will reintroduce Dorothy Walt who will talk about communication.

>>Dorothy:  You want to ask people if they have any questions now?

>>Cathy:  Does anybody have any questions? Come on up here. [ applause ]

>>Dorothy:  Thank you, Cathy, for such a wonderful presentation. I really enjoyed that.

>> maybe you want to exercise. One minute.

>>Dorothy:  okay. Okay. I'd like to begin now. We have lunch at 12:30. And if you want to be about an hour and a half lunch. And then we'll all come back here. And we have more things on the agenda for this afternoon. But for one hour, I would like to give you some information about different communication uses by different people who are deaf-blind.

First of all, I want to start with your environment. Cathy did a wonderful job in explaining the different kinds of causes of deaf-blindness and the different needs from these groups of people. I would like, there will be a little bit of overlapping of information because some of the things she says I will also repeat but they're important information. So I would like to start now with discussing environment. Your environment situation. How many of you in the audience work worry VR counselor? Raise your hand? Okay. You work with clients or participants. Right? Those five or six people. Right?

>> right?

>>Dorothy:  okay. The reason why I ask is because I want you to see in this room, you see, you notice how we set up our environment here. Michael and me both of us have special needs for visual. Environment helps. First of all, you see back here on the wall we have black or dark blue background. Why? Because behind the interpreter, we need to have a dark background. I tapped the microphone. Excuse me. We need that for contrast. You see the interpreters wear black or dark blue because their hands, the contrast, you see the contrast. The wall in the background, the wall is white or beige or something, it kind of distracts from seeing the sign language when we're looking at them. So we always like to have a background in the back of the interpreter. It helps a lot to see the signs better. The other thing we have, we set up, we had a need for close vision interpreters so we set ourselves up. Michael doesn't need it still as close as I do. I need to sit closer because I have -- I have Ushers Syndrome, yes. But my RP also impacts my central vision. It's like macular degeneration. I can't see far away. And I have a very advanced case of RP so in addition to vision I can't see far away. So I have myself close to the interpreter. Michael sat a little bit behind. He doesn't need to sit that close. So we start set up our interpreter with the light right on top of the interpreter, right there. I can't see in the dark area over there. Excuse me. You all look so dark there in the audience. It's hard for me to see you. I will probably move you over to a light area to see your signs.

Suppose in your office, you are expecting your first deaf-blind client. We use the word deaf-blind people, deaf-blind person in Seattle because Seattle, deaf-blind community, they don't mind being used the deaf-blind this, deaf-blind that. It's not politically correct, I know. But excuse me if I use that term, deaf-blind person. Anyway, suppose you are expecting a person to show up in your office who you know is deaf-blind. You want -- what do you do? You want to prepare your office and make sure it's communication compatible and to have the deaf-blind person feel comfortable. You need to look at your office. First thing you wanted to do is to make sure that your sign language gets the person. You want to make sure your signing skills are good. If not, I suggest you hire an interpreter with training already in deaf-blindness. Because they have a special training to work with deaf-blind people. Very important for communication. If your signing skills are not good enough to hire an interpreter. If the deaf-blind person is hard of hearing, you need to look at your environment. Quiet environment, yes. Maybe you need to close the door. Maybe you need to move to another room with more quiet. Especially if they're using FM system. If you have windows in your office, maybe you need to close the shade. Or the blind so they can the light is not coming through the window. Maybe you can adjust the shade to maybe a little bit light come through. If you don't have enough light, maybe you need to bring a lamp in your room. My point is it make sure that your room is ready for deaf-blind people for their vision needs and for communication successfully. Some of the things you also need to consider is if your office or hallway or whatever have shadows, needs to maybe have more light. Or you can move over to another place where there's light. If your sitting down in the room in your office or wherever and you have a window, ask the deaf-blind person if they prefer where they want to sit. Most of the time they will say they don't want to sit with -- they want to sit with their back to the window so that the light comes on you and your body, your face and your hands. You need to wear the proper clothes. Dark color. Black, blue, no red. No red! Maybe dark green, dark purple. If you have a dark skin, then opposite color. White, yellow or something like that. Important to give contrast. Especially if they're depending on sign language. Don't put on perfume. Or after shaving lotion, no. Because if you're using tactile or they're sitting close to you sometimes people don't like the smell. Many deaf-blind people have a strong sense of smell and touch because when you hear your hearing deteriorate you develop other senses so better not to have perfume or after shave lotion. If you have a beard, mustache, make sure that it's not over your mouth. Trim it. Because if they're depending on lip reading, in addition to other communication, so it's important to have that. Nice beard, mustache, where you can see your lips. Fingernails, short. Not long. Can you see signing with long fingernails? It's hard to see the sign with the fingernails sticking out like this. Cut them to make them short. Also no jewelry. Notice I have my name tag -- I think it turned it around. Oh. In the back? Okay. The name tag here, when you see interpreters they always put them back there or they put them down here. So if you're communicating with deaf-blind people, you have jewelry, necklaces, scarfs, name tag, better without because it interferes with sign language. You need to sign up, not down here. Up. You have your hand up?

>> I want to tell you about a story of a friend of mine that's very difficult. The person was a smoker and that really was bother some.

>>Dorothy:  yes. Good, good. Especially if the deaf-blind person doesn't smoke themselves. So environment is important before you start communication. You need to know the person's background. If you know you have an appointment with a person who is deaf-blind, maybe be helpful if you ask questions or read information in the file about that person's background. For example, the cause of the deaf-blind will give you a lot of information. Will help you plan better for communication successfulness. Also if possible to find out their preferred communication. The hard of hearing, use a hearing aid, cochlear implant, can they read lips? How much vision loss they have. What are the different possible communication you need to know before they show up to be ready. Maybe have an FM system in your office, maybe you might need it. Maybe not. Have paper and pen, other kinds of communication. But my point is, important to prepare for any possibility you have successful communication. So again, give you some idea. You can be creative and it's important to be sensitive to the vision needs because for effective communication that's very important for the vision needs also. I would like to talk about Cathy Kirscher talked about deaf-blind people whose vision changed. And then their communication needs changed also. Myself, I grew up oral. Was born hard of hearing. I went to public school. I never learned sign language. And I went through a public schools fine without interpreters. Maybe my skills at lip reading was good. Maybe I could understand such speech. I don't know. I don't remember. It's so long ago. But my background is oral, yes. I prefer to talk. And later, my vision deteriorated and I realize I couldn't read lips good so I need to change my communication. What do I do? I decided I needed to go and change careers. I went to Gallaudet University to learn sign language plus. That was hard because I also had to learn deaf culture. Remember, I had never involved with deaf people before. My older sister also has Usher Syndrome and she has different background than me. She went to deaf institution when she was a little girl. So her communication in sign language but my family never used sign language. We are always oral. Always oral. So I grow up, I had to change. I learned sign language. I had a hard time, yes, because my vision was really going bad but fortunately I had good people who were patient and practiced with me. So now my main communication, what? Sign language. Later on when I become fully blind I may need to use tactile. So now I'm starting to practice tactile. So again, communication change. I'd like to talk about now someone some of the different communication modes that we will use. Before I start with that, I want you to know about verbal messages that 7% of all messages -- 7% of the meaning is in words. 38% is in the vocalization. And 55% is in expression and body language. I get a lot of information looking at body language and facial expression. I know I'm low vision but I get a lot of information. So I'm going to miss that when I use tactile but that's true for many deaf people. I talk about the different communication systems we have now. We talk about techniques. We have people who use sign tactile. I will show you an example of tactile. I don't know if our interpreter, maybe Cathy. Okay. Thank you. I use both hands because I'm not skilled yet. Hi. My name is c-a-t-h-y, Cathy, Kirscher. Thank you. With one hand -- Cathy, one hand. I'm from San Diego, California. That was pretty good. That's an example of tactile. And the other we have people who use sign language. Like I told you I prefer to talk for myself but I'm depending on sign language for receptive communication. We have people do sign visual. Sign visual. And then we have people who are using FM system hearing aids or cochlear implant and voice. We have people who use Braille. So first language is Braille and maybe they can voice also, but the receptive is Braille. They can't use sign language and they can't understand speech so they use Braille as their first skill that they have. Also we have P.O.P., print on palm. You have that on overhead?

>>Cathy:  no.

>>Dorothy:  okay. Inside your folder there's a little brochure. Guideline for helping people who are deaf-blind. Inside at the bottom, is print on palm. I will come back to that later. When I come down to the list of things but I wanted you to know About this print on palm. Some people who can't use sign language, maybe because they're not -- they went blind first, and have a hard time learning sign language, and maybe they can't use Braille. Maybe the sensitivity in their fingers are not good enough but they have good English. Maybe later they went deaf-blind. They know letters. Print on palm, P.O.P., use the palm of your hand and with your finger, the palm of the deaf-blind, and you yourself use your fingers as a pen or pencil. Make sure you don't use the fingernails, just use the tip of your finger here and on the top, the whole palm, use the letter one on top of the other. Capital letters on the palm and spell out the word. I know one woman in Seattle who started using that. She lives in a special care facility and the staff there doesn't know how to communicate with her so they use print on palm with her for short sentences and she's skilled enough she can use that for communication. Also you can use print on palm for emergency situation when you signing and maybe the person can't see or it doesn't have skill in tactile yet. Use print on palm if their skills north up with it. Many people need to practice first before they become skilled but it's an emergency communication mode. It's not something that you would want to use to replace more formal communication. Maybe once in a while you meet someone who can't use that form of communication. But I suggest that you learn that for emergency situation. Anybody have any questions about the print on palm? You see the pictures on there have to make the letters on the palm? Maybe you want to practice using that.

>> Hi. I'm Mark Rosenblum from Western Oregon University and my question is, can you give an example of how print on palm would be used for a sentence? An English sentence? Would you actually print every letter of every word in a sentence or would you use an abbreviated grammar to get a message across?

>>Dorothy:  we have the person sitting down? Thank you I saw two hands. It depends on the individual using that. When you print on palm, the letter one on top of the other, capital letters and you pause before you use the next word. Some deaf-blind people are skilled with print on palm and can use abbreviation. You can use them in a sentence for some people. Most people don't like print on palm and only use it for emergency situation. I have used it myself when I'm in a car and someone wants to tell me something, two words maybe. They'll use print on palm and I can understand what they're trying to tell me. Does that answer your question?

>> Yeah, I think so.

>>Dorothy:  Maybe I missed the interpreter.

>> No, no, no. I think you did answer my question because I can see how it would be very individual. If the person signed very ASL I might use a different grammar than I would if the person was really heavy English.

>>Dorothy:  Oh, I see what you mean.

>> You did answer me that it's a very individual style that you would use.

>>Dorothy:  I see what you mean. Yeah. I have not really met anyone with strong ASL who used print on palm except for maybe one word they didn't understand something in sign. Or a more formal communication. How about you, Cathy? No?

>> Thank you.

>>Dorothy:  Because ASL is different. What I was going to try to say before later on if anyone wants to try the goggles and ear plugs, we have a half an hour this afternoon if you want to experience deaf-blind, maybe you can grab Cathy or Michael or myself and we can try print on palm on your hand if you want to experience that. We don't have enough time right now to practice in this one hour but if you wanted to try it, you can during that time when we have the goggles and ear plugs on and then, with your parted inner, try it with each other. It's fun. I would like to talk about nonverbal messages. You know when you talk to people, they're dependent on the quality and the pitch and the range of voice. Vocalizations, your laughs and so forth and so on. Many people can get information from that. I hear a lot of environmental sounds. I think Michael does also. And we can get, if you have hearing aids on or whatever we can get a lot are information listening to voices sorry environmental sounds that will give us information along with a communication. And I like my office, uses what she calls the recorded speech. She voices it at the same time because she knows I get a lot from her voice inflections. I can hear her voice goes up and down. I can hear a laugh but I understand words she says so I'm depending on sign language. So I got a lot of information that way. You will meet some people who will use that. Also you have facial expressions. And I love facial expressions. If I can see your face I will look at your face. I'll get a lot of information. Sun deaf-blind people can't get facial expression with tactile. So the person who is signing, tactile to deaf-blind person needs to substitute facial expressions with tactile signing language, emphasizing, maybe more visual information signed into the hand. I'm not going to go in-depth with that. If you're interested learning more about tactile sign language and how to use that, so information on the web or in resources that we will offer later on this afternoon. We have body, body position and gestures. We have space. And your comfort zone. Deaf-blind people require, who have -- people with Usher's Syndrome who that vision loss needs to see a small face. So most of the time I ask my -- that I'm a chipmunk so I can see better. Touch. Cathy, she mentioned touch. Very important. Some deaf-blind people don't like to untouch. I prefer people to touch my arm, my hand, my shoulder. Makes me feel good. Makes me feel light. The person with me. Maybe better to, if you don't know, not comfortable with the person that's fine. But don't be afraid to touch to get attention. That's deaf-blind culture, deaf for attention, touch the hand or look up. I prefer the person touch me to stay the hand stay on my arm so you can track my eyes up to where the body us. Not just touch and then, look, where are you? Oh, there you are. But if you leave your hand on my arm I can follow the arm up to the body and then I'm ready for communication. Also we like to hug. Some people don't like hugs. But hello, good-bye, important. Hugs. It's important communication also. You remember I said before that it's important to go slow, sign slow. Slow is good. I know many deaf people don't like to slow. But if you communicating with deaf-blind it's important, slow. With low vision, some people very low vision, slow is good. Especially if we don't know you. If I know you pretty good then maybe a little bit faster. But slow is good. Important. To allow enough time for communication to be successful. Also space is important. If you're far away and you try communicate with me, I can't see you. No successful. Important to know the person, their background, you know how much space to allow. And maybe not. Maybe not comfortable close. Tactile, maybe you're not comfortable with tactile. Too close. You need to know yourself also. You know tactile, there's different kinds of tactile modes. We have what's called -- hold on to the wrist. Deaf-blind person -- Cathy, I need you. Okay. Nancy. Thank you. I'm really wish that I have your help. Nancy's going to sign to me. Do what I'm doing. I missed that. I'm fine, thank you. I'm holding on to her hand. You see what I'm doing? Why am I doing this? Some people will start with grabbing first before they do tactile. First you learn sign language, and then visually, then later you field of vision is restricted and you tactile. To follow the sign language and then the hand tactile. You have fingerspelling. Some people do blind first and then deaf later have a hard time learning ASL. They will learn big Fingerspelling. Maybe that's all they are. Fingerspelling. I know some people who can spell fast. You can carry on conversation with them fingerspelling for a long time. The problem is that sometimes people don't like to always read fingerspell. So you need a special interpreter who will is willing to use fingerspelling for a long time or yourself comfortable with fingerspelling. Also with fingerspelling, into the hand. Tactilely. Some deaf-blind people were using and they're very skilled with that. They use abbreviation rather than spell out words. I think I showed you a demonstration of two-hand tactile. I used, there's one hand tactile also. I call that a bird cage. And I told you about -- and we have Braille. Which is also a tactile communication. And later on we'll show you a machine it's called teletouch and you can use that for communication with Braille.

Okay. Suppose you have a person who is deaf-blind and you want to use -- some people prefer large print. You need to know, ask them what size print. Ask them what kind of font. Maybe they would prefer 15 to 30 points. One woman I met last week told me she prefers 35 points. Big. You need to have, it needs to fit within their vision field also. So maybe you need to consider the paper you using big paper, big paper or small paper. The regular size. You also need to consider high contrast, black ink. And the quality of print. And also the color of your paper. Most deaf-blind prefer a golden yellow or buff paper, not white. Let me show you. This is golden yellow. I don't have buff color with me but I think you know what buff color looks like but don't use white because of glare. When you have black in it or yellow paper, it's more blends in better. You can look at it. I'll pass this out. Thank you. Do we have someone here using an FM system right now? I keep bumping into the microphone. I'm sorry. Okay. Some people many use speech reading, a hearing aid or cochlear implant. An FM systems. And then we have, well, we have three kinds of well, grade 1, grade 2, and grade 3. We have the teletouch, the telebraille with computer software and I want to give you some examples of pretty different examples that I have used and by all matter set up and different communication in my office as I meet with their plans people once in a while. First, I find out their background and then they come into my office and one man himself or, yes, also went deaf. He learned sign language later on, went to deaf institution when he was about 15. And his name is Bob. I'll call him Bob. Bob came into my office. And I was signing to him and he couldn't understand me. So I asked him, how he prefers communication? And he said, he likes the computer. I said, okay. Come and sit with me with my computer and we will share the keyboard and I would type to him or not to type using large print, "choose text." and he would read or type back, whichever he prefers. But that was his communication preference. Later on, he was getting training on tactile sign language. Plus improved his signing skills. He would come in my office later after he got that training and he still prefers the computer. But he would use tactile sign language with me also. So that's situation had successful outcomes. I was able to help him. The other person that came into my office was my mother's generation, born deaf, using ASL but she couldn't see very well so when she came into my office we were sit down in the chair close together like this and we signed to her and she would sign back to me and she would prefer to use that communication, that way. The third person who came in to I get herself hard of hearing and fully blind. She would use a hearing aid because she kept missing what I was telling her. So she preferred the one word she would miss that I've talked to her and told her so she said spoken communication. Then does anybody have any questions right now? I think what we're going to do right now is stop and later on we'll show you different equipment with Braille, the teletalk, the telebraille, the different things like that. After lunch we have Michael. Michael will give a presentation about mental health issues. And then after that we will have stimulation exercise and I have different ways that you can practice that you're deaf-blind. So I think now we can stop. We're tired and hungry. Where do we eat? Does anybody know? Becky?

>> It's going to be the Riverview Room downstairs.

>>Dorothy:  I thought we were supposed to go in the ballroom.

>> Right. Its name is Riverview.

>>Dorothy:  Thank you. And that's in about 15 minutes. 12:30. So if you want to go to the bathroom or something.

>> There's a question over there.

>> Going back to the interpreter situation, you were mentioning about the contrast of skin and background. Now, if there's an individual with darker skin, what background do you prefer? Would you prefer a lighter background?

>>Dorothy:  Oh.

>> It's just -- I'm just interested to know.

>>Dorothy:  Best thing to ask the deaf-blind person what they prefer. That's a good question. Myself, I have a hard time seeing a person with dark skin so most of the time, I don't have someone like that to interpret for me. But some other deaf-blind people have different needs so ask them what they prefer. That's a good question. I don't know. I only know myself and most other deaf-blind people prefer dark background back there with interpreters with light skin. That's a good point.

>> Thank you. If anyone wants --

>>Dorothy:  If anyone wants to talk with me or Michael, get our attention and wait for us to focus. If you sign, don't sign, maybe we can grab an interpreter. We would like to chat with you all. Enjoy the lunch and come back here, please, at two.
 

[Afternoon Session: Facilitating Successful Outcomes For Individuals Who Are Deaf-Blind: Accommodations,Strategies And Resources]

>>Dorothy:  Nancy, settle down. Good afternoon, everyone. I hope you enjoyed your lunch and I hope you had an opportunity to talk with people and tell them what a wonderful presentation we're having here. Right? I would like to turn over to Michael for him to give a short presentation about psychosocial aspects of deaf-blind but before I do that I would like to explain what's going to happen after he finishes talking. Because we only have a half an hour and maybe you might want to jump right into it. But what we're going to do is when Michael is finished talking, we will take a half an hour break. You have a choice of several different things. You can just leave the room or walk around, go to the bathroom if you want for half an hour. Or if you want, you can try a stimulation exercise. We have goggles and ear plugs on the table. The goggles represent different kinds of vision problems. We have one that is tunnel vision. We have glaucoma. Cataracts. Macular degeneration. Different kinds. The tag around the goggle tells you which vision problems it represents. There's a paper on the table or maybe Nancy and Cathy Kirscher will tell you which one of those goggles represent. Put them on. You can put ear plugs in. And then you might want to do is maybe you want to walk over to the table and pour yourself a glass of water through those goggles. Or maybe you might want to try to read a regular paper or maybe you want to approach someone and  try to communicate with that person using print on palm, whatever is fun. Then there's also a little bag of different toys on the table. Maybe you want to feel something. Put your hand in and see what you're feeling, look at it through those goggles. You can change to another kind of goggles. We only have half an hour so maybe you want to walk around the room. We are not to go outside down the steps because we didn't give you orientation in mobility so try not to go any place where you don't feel comfortable. And so we will do that for just a half an hour. For now, I would like to turn over to Michael and he will give a wonderful presentation. That's his field, his background is the mental health field. So Michael.

>>Michael:  Good afternoon. My job is to keep you a wake for the next two hours. We will have to jump up and down. We will have a little more interactive program where you and I are going to work together on this because I have to keep you awake. We are going to talk about the psychosocial issues involved with deaf-blindness. I am a mental health counselor. I bet a lot of people are afraid of that word, "mental health." so I prefer to use the word psyho-social rather than mental health. I'll tell you a little about me. I have Ushers Syndrome Type II. I was born hard of hearing. And my R.P. showed up about age 25. And I didn't have it diagnosed until I was age 32. And I didn't do anything about it until I was 44. I've had -- I'm on my fourth career. I started out in retail. I have been a cabinet maker. I've been a therapist. And now I'm getting more involved in the deaf-blind field. The next slide is a story that I want you to read. And it applies to -- it's a good opening story. It's about a friend of mine that was showing me his pet shark. And it was swimming around in this -- oops -- in a small fish bowl. It's about three inches long. And my friend said, well, this is a real shark. It's small because of the size of the aquarium I keep it in but if I were to let him out of the aquarium, and let him go out into the ocean he would probably go to his normal size. And I told my friend, well, you know, weird or not, it kind of reminds me of some deaf-blind people I know. What does that mean? Any ideas? Any ideas what I'm talking about? Go ahead.

>> If you open up the environment, the person will grow.

>> I'm sorry. There's too many people talking at the same time. Say it again.

>> It's just like an environment. The people will grow if you let the environment grow.

>>Michael:  okay. Was there another comment? You pick. I can't see out there.

>> It's almost the same idea as hers. It's the same as a deaf-blind person. If it's contained in a small area they can't grow either.

>>Michael:  Okay. Who controls that environment? The deaf-blind person himself? Or support people like family members or friends. Okay. But also the deaf-blind person himself depending on his life experiences. Yes. Go ahead.

>> And also you would be limited by other people's expectations or understanding of your abilities.

>>Michael:  Okay. That's true. Any more? Feedback?

>> As you become older, sometimes it's easier just to sit in your room instead of working hard to put yourself out and meet other people.

>>Michael:  More?

>> It's similar to what I'm thinking, prov theory. It's the same as Pavlov's theory, the theory of helplessness.

>>Michael:  okay. Basically, I want you to hold that story in the back of your mind and we're going to go on to some other issues but as we go through the different psychosocial issues related to deaf-blindness, kind of remember that story.

Basically, we're talking about people making -- making adjustments to a loss. And when you make an add just meant to a loss you're talking about making an adjustment to a change. Now, the change can be very difficult. It can cause what we call grief. The grieving process. But at the same time I want you to remember that it's not always about loss. How so? Through the improvements in technology, cochlear implants, digital hearing aids, technology, sign language itself, people can suffer stress and grief from a positive thing. For example, you get a promotion  on your job and you move up the ladder, it's a gain, yes. But it's also stressful. It can cause some grief. You're grieving the old ways you used to be around the office. You're missing the relationship you had with your peers previously. That's a change. A lot of times within this field, we apply the Kubler-Ross model of grieving to blindness and that includes five phases. This model, remember, is based on bereavement, death. How can we apply that to deaf-blindness? Well, what we're saying is that the loss is similar to a loss that a person would experience to bereavement. But this is not the only model. There's been a lot of new research now, especially within the deaf community or the deaf culture, about identity. Okay. Changing identity. Whenever you have a change in your identity, or you're not sure what your identity is, that can cause a sense or a feeling of loss which can lead to grieving. The clinical symptoms of a mental health problem is not necessarily the same as those in grieving. Okay. Grieving is normal. It's if someone were to experience a loss with no grieving we would suspect that there's a problem there. Okay. So when we're talking about grieving, we're not talking specifically about a clinical mental health problem. However, there are a lot of behaviors and emotions that occur in grieving that mimic a serious mental health problem. Now, in a previous slide, on a previous slide, you saw the five stages:  denial, anger, depression, bargaining, and acceptance. The anger and depression, you see that a lot in bereavement but you also see it in clinical cases of a mental health problem. What's the difference? How do you know the difference? Any ideas?

>> I would say the amount of time that the depression or the anger lasts, if it lasts for a long time it might be more clinical.

>>Michael:  okay, so time. How long this continues on. Is there more ways to identify whether it's a normal grieving process or actually a serious clinical mental health problem? Any ideas?

>> The capacity to develop coping skills versus the inability to develop coping skills or move on through the stages past the anger and into the final acceptance.

>> Okay.

>>Michael:  that's good. The difference is, yes, time. The difference is in severity. The difference is how much it impacts daily life. Your daily living. If it has a serious profound impact on your ability to cope on a day in and day out basis for more than three months, we're looking at possibly a clinical symptom here. Now, the bereavement model that Kubler-Ross described, she lists five stages. But that's not necessarily so when you apply it to the deaf-blind community or people that are experiencing a loss of vision or hearing or both together. How so? Because this kind of loss is a recurring loss. Most times it doesn't happen overnight. It happens over a period of years. It could -- it could last for a period of 50 years. People with Ushers Syndrome I or II like myself, we've been going through this for 40 years. Didn't know it. And they don't know it until they're identified. And it can happen overnight. So there's a difference on the way that person is going to cope with that loss. And generally speaking, according to Kubler-Ross she says that until the person goes through all five stages, to the final one of acceptance, they're not going to resolve that grief. And what I'm saying is, that's right but guess what? They got to do it a number of times. They have to do it more than one time. Why? So the model that I propose for deaf-blind people is what I call a spiral concept. And what I want you to do is to imagine a cone-shaped spring, that spirals up. And the spring is real thick on the bottom and that indicates the intensity of the grief. It's very thick and heavy in the beginning. And if it's appropriately resolved it moves on but doesn't move downwards. It moves up and that spring becomes thinner and thinner and less stressful until what? The loss is completely resolved, fully blind and fully deaf. It doesn't happen often. It happens sometimes but not often. So within this population, you're looking at a large number of people that are going through a period of time that is more than two weeks. It could be several years. And they're experiencing grief over and over again, each time there's a loss involved. Each time there's a change involved that produces enough stress and it causes grief. I've never used power point before. Okay. What are the losses we're talking about? We're talking about loss of sigh logical security and well being and the sense of feeling confident, okay, I can handle whatever is the challenge. Yes.

>>Dorothy:  I'm Dorothy. I wanted to ask Michael, the word "acceptance," and that process, many deaf-blind people tell me the word "acceptance," no. They prefer to use the word "adjusted." because they never will accept. That fits in with that process.

>>Michael:  That's a really good -- is she finished? That's a really good point, yes, a lot of people don't like that word. And Dorothy says that many of us use the word "adjustment," and I have another word that I like to use and that's called, integrating the loss into your lifestyle. Coping. Okay. Learning how to cope with the loss and integrating that particular loss into your  current lifestyle. That's really what the fifth stage is. So like I said before, we're talking about psychological well-being. I feel confident I can do what I did or have been doing for years. You lose that. It takes a little notch step down. Perhaps basic skills like reading your mail, cooking, home management, running errands, these things are compromised. You can't do them like you did them before. Maybe you need a little help now. That's a loss. Communication preferences. You've heard Dorothy and Cathy talk this morning about the different communication techniques. Just think about that. You're born deaf. Okay. You're fluent ASL. And you can't see well enough to use it anymore and you have to change your communication preference. That's a biggie. A real biggie and I'm explain further in a minute. Same thing with hard of hearing. It's probably even a bigger one for a hard of hearing person to have to learn sign language. Not an easy task. Appreciation for the visual arts and really I should include the auditory arts like music. Like music, pictures, landscape, it's not as clear as it was before. It's a little fuzzy. It's a loss. You just don't have that appreciation. Research shows when people are watching captioned TV they're watching the captioning. They're not seeing the full picture so actually they're reading a book very quickly. And if you're deaf-blind, it's even worse because half the time you'll miss the words that show up there because they're too darned fast. Or the wrong size. Or the wrong color. Or the wrong background color. Or misspelled. Occupational and financial status. This really gets impacted. You lose that feeling that I'm where I'm supposed to be doing what I'm supposed to be doing and earning what I deserve to earn. Mobility. Can't walk from one end of the building to the other in a dark hallway like you did before without tripping over six people. Independence and control. Don't have the same amount of independence you did before. I used to be able to get up, and get in my car and go to the hardware store whenever I wanted to. Now I got to wait for my wife to get up which may be noon on Saturday. [ laughter ] you know, that's a real impact on your life. She gets up at ten. Social contacts. Remember that communication determines who you're going to socialize with. If you change that, you just now changed who you're going to socialize with and it may be a drastic change. It may cut your social contacts by 99%. Instead of having 15, 20 friends, it may come all the way down to one. Or some people, none.

Self-worth. What do you mean by self-worth? It means your productivity. Do I feel productive? When I get up in the morning and go to my job do I feel as worth it? Do I feel proud of myself? If I don't, then myself-worth has really taken a shock. Contribution to the community. How, when I lose my vision, lose my hearing, can I continue to contribute to the community as a taxpayer, as a family member, my role within the family, I'm just a John doe citizen. That's yourself-worth. If somebody takes a punch at that it's going to hurt. We talk a little bit about culture and language this morning. The inability of a deaf-blind person to communicate effectively with anyone, especially people they did before, is the most critical thing that affects that deaf-blind person. It's also the most frustrating. There was a time when I didn't have to worry about where the person that was communicating with me, where they were standing. There was a time I didn't need five seconds to look and find that person. Really changes communication. And it also changes your identity. Because communication references is closely linked with culture. If you're deaf, ASL, that's the deaf culture. If you're hard of hearing, you're still in the hearing culture. If you're blind, with good hearing, you're still in the hearing culture. When you analyze what's going on, you are really taught culturally, you're talking two different cultures, the deaf and the hearing culture. I'm not going to get into a big discussion whether there's a deaf-blind culture because we don't have enough time for that. But there is a deaf-blind community. I will give you that. And in some cities, where there's a large deaf-blind population, yes, there's a deaf-blind culture. And there are rules that deaf-blind people prefer to follow for communication that would probably designate that particular group of people as a culture. But it goes a lot deeper than that and we won't go into that right now. However, the vision loss leads to confusion about identity. And there's been a lot of research done recently, especially within the deaf culture, talking about that change in identity. Starts out with, "hell, no, I'm not deaf! Hell, no, I'm not hard of hearing or I'm not -- I'm not deaf-blind." it's very similar to denial. Later on, what happens? Some anger gets into it and frustration and confusion. Okay. Then there's this thought, well, maybe I'm a little bit. Maybe I'll a little bit deaf. Maybe a little bit hard of hearing. But I'm all right. Doesn't really change anything. Okay. Later on, as the losses continue, well, yeah, I'm deaf-blind. But I don't need this, this, this, and this. I'm going to negotiate my way through it. I'm going to bargain my way through the process. Okay. And usually what happens after that, when it becomes so frustrating, and it will, with the -- especially with the communication and the socialization and issues of independence, there's going to come a time when that person becomes depressed. Mark my words. Deaf-blindness is psychologically significant for anyone irregardless. It's going to have an emotional, psychological impact on that person. Whether that leads to clinical depression depends on a whole lot of things. Okay. But you people are probably going to be one of the first people to be able to identify and maybe recognize the possibility of a clinical mental health problem. If you don't know, you ask, you get help from a qualified therapist. Does that mean that the therapist has to be an expert in deaf-blindness? Not necessarily so. Although it would be wonderful. So what kind of a therapist are you looking for? I would suggest that you're looking for a therapist that knows something about grief. Something about depression. Something about anger. And then give them or maybe they have the tools that help them to understand deaf-blindness. Don't let it go. If you see behavior that continues for over three months, that has a severe impact on your ability to cope with daily living challenges, address it. So part of your job as a counselor, as a teacher, as a friend is to look for those things. Because something's going to show up. People react to stress in different ways. And experiencing loss is stressful. We talked a lot about this. I'm not going to go do it completely, the change in communication. Very, very difficult. And it leads to changes in -- sorry for the delay. It leads to changes in your cultural preference. You may have a person that grew up oral, hard of hearing, that now is transitioning more into the deaf community. If they're lucky, they'll make it. More than likely, it's going to be a real struggle. And also it's going to impact yourself-confidence, self-worth, self-esteem. Communication and cultural barriers together, when they happen together, lead to social withdrawal. Okay. I can't communicate with the people and the friends that I have before so I got to find new friends. And the older you get, the harder it is to make new friends. I can remember when I was in my 20s, and early 30s when my children were young, hey, it was a snap meeting new people because I did it through my kids and through school. But when your kids grow up and they leave the house, and it's just you alone or you with your spouse, hey, it's not easy meeting new people. And imagine that you're not tactile and you're trying to meet new people through tactile communication. It ain't gonna happen. It will to some extent but many times it's just not going to happen. I'm sorry. John Doe on the street isn't going to let me put my hands on him.

Bluffing. This is one of my favorites. Hearing-impaired people -- I know that's not politically correct word but hard of hearing and deaf people are the world's greatest fakes. Understand. Or this. But most times when they're bluffing, they're going like this. That they understand and they don't. It's going right by them! Five minutes later they say something and you know, they didn't get it the first time.

Dominating conversation. Good trick. If I do all the talking I don't have to try to understand what you're telling me. So I'm going to talk forever. Just like I am right now! I'm talking forever up here. You guys don't have a chance! Pretty good for me. Might be boring for you.

Loss of intimacy. Well, that works two ways. Jeez, if I'm tactile maybe it's more intimate. [ laughter ] really, no. People don't like being touched. Not in our society. And deaf-blind people need it badly and want it badly, most. Some deaf-blind people don't like touch. I have met deaf-blind people the minute I put my hand on their arm, they're on a 50-yard dash. They'll run over anything that's in the way.

Lack of self-assertiveness. And that's back with the faking thing. Uh-huh. Uh-huh. Waitress asks you if you want something to drink and you say, bring me the check.

Argumentative, weary and tentative behaviors. That's that self-confidence thing. If I'm not confident and what I'm receiving, I'm either going to argue with you, make my point because you're wrong, or I'm going to back off. Another key to the psychological and emotional issues here is what I call isolation. And like I said before, most people don't understand what we need for communication. I keep hitting that. I'm just like Dorothy. Dorothy, you taught me well. I keep hitting the microphone. People don't understand that I need to change my signing. I need to sign smaller and slower and clearer with good light. And if I don't and forget five minutes later, it happens often. Excuse me.

Tactile signing, I can't tell you the number of people that have pulled their hands away when I've reached out. One, because they don't know what I'm doing. They think I'm groping. Maybe I am! No. They don't know why I have my hand out there. And if they do, they're not comfortable with it. And you know, within the deaf community, with a strong emphasis on ASL and visual and using your hands, the minute I put my hands on an ASL signer I'm restricting their ability to be fast. They don't like that. I don't blame them. But what am I going to do? You know, I have a right to communication also.

Personal space. Okay. Especially if you're using tactile it really changes. Before when you had that three feet in between you, now you might have six inches and you're also touching somebody. It's not an easy thing for a lot of people. In our culture, a lot of people are afraid of it. In the deaf-blind community, a lot of us thirst for it. The power of touch. And there's been books written about the power of touch. It's like a key right to the person's soul. That's why we're human. We thirst for human contacts. Okay. More so with deaf-blindness. Because I don't have the visual and the auditory contact that I had before. I can't go on the street and start licking people. Right? [ laughter ] or smelling them. Although we do develop a keen sense of smell. Smell perfume and natural body odors. We can start to identify people that way also. But so far, when you've got the five senses, what's left is touch. Okay. Deaf-blind people interpret it as being snobbish. Any idea how that happens? Let's wake up here. Any ideas?

>> They don't reach out to other people because they don't want to be snubbed.

>>Michael:  Okay. So I'm walking down the hallway, it's dark. I'm more concerned about where I'm going. I really got to go to the bathroom. Okay. I've got my hand trailing the wall and I'm looking down. People are passing by me and I'm not looking at them. If you didn't know I was deaf-blind, you might think I was a little bit of a snob. That happens every day. I went to go to the University for five years. Off walking through the campus, through the student recreation center, oftentimes people passed by me, I couldn't see them. So I didn't stop and talk to them. And I would guess a lot of them thought I was pretty high-tooting guy or something. I'm sorry.  I just didn't see them. But it looks bad. There's no eye contact. So we lose that sense of connection with people. Whether it be other deaf people or hearing people. People in general are afraid of becoming blind. They're more afraid of becoming blind than they are of becoming deaf.

Okay. You get feedback from the environment through your five senses. You get 83% of your environmental feedback through your vision. And you get 13% through your hearing. 2.5 from touch and so on. Whatever's left. Okay. So becoming blind is pretty scary stuff. Becoming deaf-blind is even scarier because you're talking about a range that could go all the way up to 94% or more of your feedback being cut off. So what happens? That world kind. Shrinks down. It's like being in an egg shell. So people, they're afraid of it. And they don't want to hang around with people that are becoming blind. Just like a lot of people don't want to hang around deaf people. Because they don't know sign language. They don't know how to communicate. And so they avoid them. It's only natural.

Fears of dependency. People who are sighted and hearing are afraid that this person over here who has this vision and hearing loss is going to started depending on him for whatever. Socialization, transportation, running errands, whatever. So if you meet someone and all of a sudden it's like this, clings on to you, you are going to try to push it back. Space. That's your boundaries. And then this is where a lot of people end up going. No man's land. They don't fit in either the deaf or the hearing culture. Remember there's only a few cities in this country that have a large deaf-blind community. Most of the time, deaf-blind people are stuck in their community all by themselves. There may be a few people there but they have no way of knowing how to meet them because there's no deaf-blind social activities. There's just no way to meet them. So they end up being stuck at home. I think there's -- is there a hand over here?

>> Nick. My name is Nick Barnard. That point right there along with the isolation screen that you had up made my think about the shark story in the beginning. That there was only one shark in the tank and it wasn't able to grow. You let it out into the ocean to socialize with other sharks and it would be able to grow. Which makes me wonder about more or less the deaf-blind adolescents who are growing up in rural areas without a great deal of educational options and their parents have either kept them there or home-schooled them for whatever reason. And so they're limited in those choices without the social connection which makes it a kind of a reasonable why people are, the deaf-blind community generates -- degenerate to one Seattle or Boston to that one community is because everyone else is there. So it makes sense to me.

>>Michael:  Makes a lot of sense. And that's why it happens. But you know there's a wide, wide diversity within this population we call deaf-blind. Okay. Just because a person has been identified deaf-blind doesn't mean they're even going to fit in the deaf-blind community. Why? Well, it depends on their communication skills. It depends on their life experiences. Depends on their family upbringing. It depends on their occupation. There's a whole list of things. You know the shark swimming around in the small bowl, okay, if you get him out of there he's going to grow. It might drown him, too. You know, you just can't take from one environment and enlarge it and put him in another environment and say, so long! Good luck! It could kill him. I think I'm seeing more hands. Wonderful.

>> My name is Jen and I want to do relate to the story you're talking about. Do you approach many deaf-blind people with the emotional level that's lower? Because they don't have the chance to, you know, progress in their emotional needs and socializations? Do you see a difference in the deaf-blind people?

>>Michael:  Emotionally? Is that what she's saying?

>> Emotional maturity, you know, just awareness. Just maturity in general, their behavior.

>>Michael:  That's really a good question. And I got to check my time. Take me a few minutes to talk about that. We learn a lot from our, what I call experiential environment. That's the experiential environment. It's called incidental learning. For example, we see things happening far away, we may not hear it but we can see maybe facial expressions. Or we can see behavior. We learn a lot from that. And deaf children who are in a hearing family that don't sign will miss out a lot within their experiential family at the dinner table. They can be going like this, what are you talking about? When is an opportunity to learn social behaviors. Okay. So a deaf-blind person generally has the same problem. They're experiential environment gets limited, gets whacked around, gets chopped down. They don't have the same opportunity to develop social and behavior skills that matches what we call the norm. Or what's happening out there. Thankfully that's kind of good sometimes. Right? I mean, these kids bringing guns to school is a good example. You don't want everybody learning how to do that. Okay. Now, the answer to your question. It depends on so much. So many criteria that determine the maturity and the emotional level of any of us. Okay. And when you add deaf-blindness to it, I think it's okay to assume that there's going to be some limits there. Just simply because their incidental learning has been cut down. So how do we improve that? They need to be exposed to more situations where they're getting feedback from their environment and generally that happens through communication. And generally, that happens through feedback. And if this person has a severe limit in their ability to see and hear, then, the service support people become critical. For example, your interpret he is, your SSPs, your interveners and your family members play a critical role in how much that particular person is going to learn. And experience and grow. And those people a lot of times are controlling the size of the fish bowl. Believe it or not, yeah. What would be natural. You don't want this person to get hurt. So you set up some limits. You're going to limit the size of that fish bowl but be careful. Huh? Don't make it so small that the person can't grow. How do people grow? They need challenges they're capable of overcoming or capable of handling. When you meet a challenge, and you successfully cope with it, you move to the next level. So when I say don't make that fish bowl too big, don't give them a challenge that they don't have a chance in hell of dealing with it. Okay. That's where you come in. It requires a lot of thinking on your part when you develop a treatment plan. I don't to use the word "treatment." a rehabilitation plan. Okay. You really got to sit down and think about what this person's needs are, what this person can actually accomplish and set your plan to meet that. If you don't want to set it too low, because then that fishie can only be that big. But you don't want to set it so big that they're overwhelmed and they give up. I can't stand up here and give you the perfect I.E.P. or the perfect what they called E.W.R.P. I can't give that you because everybody is so different. This is one of the most diverse populations you will ever work with. There are so many factors that you have to take into consideration and you can't just eliminate them because you've identified them as, quote, deaf. So, okay, ASL. No, wait a minute. A lot of deaf people read lips along with ASL. Excuse me. Excuse me. Go ahead.

>>Dorothy:  I'm Dorothy. Michael, I want to add to what you just said that important for the deaf-blind person to get appropriate training services that meet their needs to help them grow also. When I say appropriate training, I mean training that has teachers who understand and are aware and have training in providing the services and training for a deaf-blind individual.

>>Michael:  The people from, that have been working in this field for many years are a wonderful resource along with Helen Keller regional reps, if you have a deaf-blind client, a child or adult, you're not quite sure what to do, please don't hesitate to contact us. Okay. I don't expect you to remember everything we've talked about today. There's a lot of information here. It takes a few years to get your feet in to this field and feel really comfortable. You may only have one or two clients that are deaf-blind. Contact us. We'll help you. That's what we're here for. Was there another question?

>> My name is Linda. I want to do say in terms of that fish bowl again, I have seen situations where that diversity that deaf-blind and blind-deaf individuals sometimes clip each other's fins, so to speak because of their arguing about communication preferences and actually making it more difficult for each other and mutually unpleasant rather than working together to support one another's different needs. And I've seen some very negative results of certain conferences I've been to.

>>Michael:  Unfortunately, it does happen.  If you look on DB Link, you'll see an article that I wrote about five years ago called "the tale of two cultures" that addressed that situation a little bit. Yes. Within the deaf-blind community, we have similar struggles that's happening in the hearing community with deaf people. ASL, cochlear implants, speech, reading skills, it's in deaf-blind arena, too. So it's almost like it's a copy from what's happening out here in the big world, yes, I agree. And some people don't want to be in either one. Some people don't fit in any, quote, group. And so we call them marginalized. They get shoved off to the side. What happened?

>>Cathy:  just touch it.

>>Michael:  Okay. Thanks. And so they become more isolated. More isolated you become, the more depressed you become. The more depressed you become the more TV you watch. The more TV you watch, the more depressed you become. It's just a vicious circle. Not that TV is bad, but there has been research that has shown that too much watching TV causes depression. Social reintegration. I think that's how you say that. Learning how to reestablish social contacts with a new and prefered mode of communication. It's not always successful. We would hope that it would be. We would hope that the people that provide services and support recognize that and encourage behaviors that will enhance the opportunity to meet other deaf-blind people or other people that can't communicate.

An issue of independence, we talked about this before. Just can't do what I did before. I'd walk from my bedroom to the living room with the lights off without tripping over either the cat or a table or a chair or one of the kids's toys. Now, at my house, my kids have learned. They're grown up now but they learned really quick that you don't leave toys laying around on the floor. If you want them tomorrow, you put them away. [ laughter ] I have thrown away a few things in my time just out of anger, frustration. Okay. That's that feeling, you know, comfortable, self-confidence.

Relearning daily living skills. That's going to be parted of your adjustment process. A lot of people go through this whole thing feeling pretty depressed. Maybe not clinically depressed but just blue. Don't expect your client to show up big smilie face on a shirt saying, ah, I'm ready to learn this now! I'm ready to learn Braille! Show me the way! It's not going to happen! And you know what? They're not going to go after? Shoot. It's on the next page. They're not good go after learning a cane. In fact, they're going to avoid it. Using a cane is directly related to identity. I can be deaf or hard of hearing, and no one knows about it. The minute I pick up my cane, oh! He's blind or she's blind! And I have to carry that identity. Maybe I don't want to. So I'm not just going to pick it up and use it. Now, my situation is a little bit different because I'm a little bit of a nut. After denying it, after avoiding it for many years, and then losing my job -- I was a cabinet maker. And when I finally got to the point where I couldn't fool anybody anymore, when I had tripped over enough carts that are 18 inches off the floor, and fallen flat on my face, after running into what we have a conveyor line that we hang the cabinets on that go through the spray booths. They built the thing so that the steel conveyor line was right this level. And I can't tell you -- I'm surprised I still have hair! I ran into that thing almost every day. They even painted it bright orange. Didn't help. They even painted stripes on the floor. Set up a walkway. Didn't help because if that cart was one inch over the yellow line, I didn't see it. I would hit it. So I finally told my boss, and my boss says, well, hell, you can't work out here anymore. I've been out there for five years. But he said no more. Why? Because his insurance rates were affected. And the other workers were affected. So after going through this, I said, okay. I didn't even know sign language. I didn't learn sign language until I was 44 years old. I didn't know Braille. And I was scared to death of losing all my vision. But it was changing. It wasn't getting better. I'll tell you that. And I was driving. I had to stop driving. Okay. So when I went in for my rehabilitation, the Blind Center of Minneapolis which is where I'm originally from, I went the whole nine yards. And when I was trained with my cane, I used the blind fold. Even though I could see, yes, I used the blind fold. Why did I do something like that?  Because I wanted to have the confidence and the feeling that, yeah, if it does happen, and it will, if I live long enough, I'm going to become fully blind. I wanted to know and to feel and to project that, yeah, if it happens, I'm not going to like it, but I'm going to be able to cope with it. And there was one period of time when I wore that blindfold every day for two weeks. And did all my walking from an apartment which was three blocks away from the center to the Community Training Center with the blindfold by myself. Talk about stress. That's stress. Learning interdependency skills. You know, it's not easy to ask for help. Especially in America. You're supposed to be able to do it all yourself. My god! You're supposed to be independent. You're supposed to be at 18 you're supposed to leave your family and supposed to leave mom and dad and get a job, get your own place to live and solve all your own problems. That's what we teach each other. Right?

I see -- I think I see a lot of people going like this. Now I got to ask for help. Ain't easy. Ain't easy to wait an hour for a ride when you used to being able to get in your car and do whatever you wanted to. Psychologically, emotionally, poof. It really hits. Driving privileges, I call this the domino effect because when you can't drive anymore, you've been driving, it changes everything.  It changes where you work, it changes who you socialize with, it changes what you do independently. But that one thing, changes 15 other things and by the time you catch up with it and adjust to it, you've been through a lot of stress. But again, maintaining social contacts, healthy ones. Again, learning cane travel, learning Braille, learning new technology. That's been fun. And a lot of deaf-blind people thirst for that because technology does open up doors. And you people here in the room, please remember that. If you're working on a rehabilitation or educational plan for your consumer, it's going to take money. Because they're going to need the technology. A lot of it is right up here on the table. This stuff ain't cheap! But you don't think -- you think a deaf-blind person is going to be able to afford it? Huh-uh. We need your help. And learning Braille is like we said this morning, both Dorothy and Cathy, that's -- I would say that's as hard if not harder than learning ASL. It's not easy. If you have a Braille card with Braille on it, try learning it on your own. It just -- it just doesn't happen overnight. It takes time. Appropriate use of service providers, in this area, the problem becomes the consumer becomes co-dependent. Not interdependent, you ask for help, the help helps them accomplish their goals. Sometimes what happens is they start depending on you to do things for them. Okay. Here's an example. My hearing took a shot for the worse about the same time my eyes really took a shot for the worse and I had to learn sign language. And I couldn't use a hearing aid. Because back then, the digital hearing aids were really pretty worthless. They're really good now. I can use a hearing aid now. I do use it occasionally. I don't use it as often as I should. Okay. But when I didn't use the hearing aid and I was learning sign, whenever I went out with my wife, my wife became the interpreter. Okay. That's a real hard habit to break. Let me tell you. And it's not really a good thing if you can speak for yourself to have somebody else speak for you. Plus it's a hard thing adjustment to make. So you have to be careful that when you are setting up plans for your consumer that it enables, it empowers the client to grow and not become co-depend dented. -- co-dependent. Changes to family dynamics. Now, that can be in a number of ways. Maybe the person that becomes deaf-blind was the major bread winner. Now they're not. Okay. Maybe that particular deaf-blind person was the person that attended PTA meetings, did a lot of stuff with their children and now they can't do that. Maybe as a child that played soccer for five years and now can't play soccer. Lots of changes. So I'm going to summarize this. I'm doing pretty good. Not bad. Okay.

What do deaf-blind people themselves need to do especially with relationships with their fish bowl? Well, first of all, many of them are pretty well-adjusted. Don't forget that. Just because they're deaf-blind doesn't mean they're not well-adjusted. A lot of them are very well adjusted but they could be struggling, too. Deaf-blind people north determined by their disabilities. Again, the fish bowl, that glass aquarium doesn't define the size of their environment. The disability doesn't define that. But it's really easy to do. What the key is is this person has an ability and has capabilities developing skills. What are you going to do with those? Are you going to help build them, nurture them? Or are you going to keep them in the small fish bowl? That's the deaf-blind person himself doing that. Many deaf-blind people will stay isolated simply because they're afraid. And that's all right. There's nothing wrong with being afraid. But we can't run away from it either. Because what happens is we get stuck and it's really limited environment. And that leads to clinical mental health problems. Leads to things like possibly skits schizophrenia or psychosis that needs immediate intervention. The deaf-blind wants to watch that, too. The deaf-blind person has to be made aware of the it. Talk to them. Patience. Ten years ago I had been -- I had the patience on a scale of 1 to 100 I had the patience of zero. I think my patience has increased a tad. Okay. I'm not a very patient person. But if you have a hearing and a vision loss, you got to develop some patience. Because we run on deaf-blind time. Things are a little bit behind schedule. Things don't match schedules perfectly. We didn't start at ten o'clock this morning. We started at ten after ten. Why? We had to set up some communication issues here. We call the AADB every two years they have a conference. You wanted to see deaf-blind time, come join us! Because somebody was scheduled to start at ten o'clock will start at 10:30, 10:35, 10:40, because you have got all of these people coming together with different communication needs. And it takes time to set that all up. Deaf-blind people don't show up for things 15 minutes ahead of time. Usually, a lot of times they show up 15 minutes late. Because they missed the time, they didn't see it. They can't walk as fast as visual people can. It takes some more time.

Need a lot of patience. The deaf-blind person has to become a willing participant, has to participate in their rehab process. And that might take some time to convince that person to actually participate because they're still adjusting. They're still grieving. Somebody that's in the grieving process, they're not going to jump out of it and go to rehab and say, here I am! I'm ready! It's going to take time. How much? I can't tell you. Could be six months, could be a year. Could be ten years. Could be never. Deaf-blind people have to be encouraged to take care of their psychological, mental, spiritual, physical and emotional needs. Take care of themselves. Get plenty of rest. And they have to develop interpersonal skills through networking with other deaf-blind people through counseling, support groups and through you? You. We need your help. Support people. What do you people have to have and do? Patience. Just like we do.

Respect. Respect for our needs. Respect for the fact that I can't do what I did two weeks ago or what I did two years ago. It takes me more time. I can't do it perfectly. I can still do it. I can still bake a cake. But I can't do it in two hours. It might take me four hours. I definitely can't drive so I'm going to be asking for a ride or I'm going to be learning how to use public transportation. It takes more time. Recognize and support our needs. Okay. If we don't know what our needs are, if we don't know how to set up a rehabilitation plan, get help. That's what we're here for. That's what Helen Keller is here for to help you. That's what the affiliates are here for. Understand the cultural difference. Understand that a hearing person, a hard of hearing person might be transitioning into the deaf culture or transitioning into the deaf-blind community. Avoid the paternalistic attitude, the "poor guy." "so sad." yeah, we want your respect. And we want your help. And we will be all right. We will survive. But help empower us. Don't disempower us. That's the last one is empowerment. Help us to become assertive, growing, productive members of this community. And not compare us to everybody else because we're not going to meet that expectation or the goals of visual auditory persons can normally do. It's just not going to be that high. Don't set it too low either. And that's all I have. We have two minutes. I can answer a quick question if you have any. Okay. Thank you. [ applause ]

>>Dorothy:  Waiting for Michael to sit down and see the interpreter. Ready? Thank you, Michael. Wonderful presentation. You did a wonderful job. Cathy Kirscher also. Right now we will take a break. The sign, I don't know. But we have a half hour. And before I told you about goggles and stimulation if you want to try that. Cathy and Nancy will help you. Michael and me will try to approach you and communicate if you want. Or yourself independently if you wanted. Go over to the table, get water, whatever. If you don't want to try that you can go outside, exercise, bathroom or whatever. Half an hour. We will start again at -- oh! 3:15 already. At 3:45. And we will have John Reiman. Okay. Enjoy yourself.

>>Dorothy:  would everybody please take their seats. We're going to get going, kiddos. I wonder why this group of people gets smaller and smaller and smaller. [ laughter ] probably too much information for one day, huh? Really, we could take the whole week to give you a lot more information. Is everybody out in the hallway?

>> People are eating two rooms over.

>>Dorothy:  Now you tell me! [ laughter ] it's not good to eat at the same time, sign and eat. Is everybody out in the hallway, want to come down and sit down, please? Or eat it fast. Thank you, boss. Okay. Everybody feels good? You have any feedback you want to share about the stimulation? Ear plug? Anything you want to share with the group of people today? Go ahead.

>> I noticed when I put on the one that --

>>Cathy:  Can you talk really loud?

>> Whatever the one that has the pinpoint, the R.P. one, all of a sudden I didn't want to go anywhere. [ laughter ] and then my balance was sort of off. And I heard a voice, I kept trying to find Nancy. And I think she was bending over.  She would say something and then she would disappear. I looked that way and she was gone. Then I would hear the voice again and she was gone.

>>Dorothy:  You know many people with R.P. scan, always look around? Most of the time we're not looking one way. We're scanning all the time. So that helps a little bit. Anybody want to share? You want to share your experience? No? Were you scared? Okay. I'm going to turn over to Cathy Kirscher to talk about technology. When she's finished, then, Dr. John Reiman is right here. He'll talk about resources when she's finished. And please later on, don't forget about the evaluation form. We want to hear from you feedback about the workshop today okay, Cathy.

>>Cathy:  Hi again. I'm going to start with some low-tech stuff. And Carol our CART person, she came up to me and she said you know this morning when you were talking about people over 40, and my joke was my business card had large print for those of us over 40 she showed me her funky little reading glasses. And this is about as low tech as you get. You buy them at Walmart or Wallgreens or Fred Meyer's. Cheap and to make it funky and fun, but this is where we all start. We all start at age 40 whether a significant vision loss. What I liked about Carol's was they're fun. They're colorful many they're psychedelic. She was a child of the '70s and  '80s. I can tell. Because I scared you off this morning and told you that we send people who are deaf-blind to rehab counselors for the blind because they spend money on technology, I want to start with some low-tech stuff. Because not everything is expensive. Carol, your glasses were how much? $5? $7? That's about as low as they come. Dorothy talked, some of the things are just magnifiers but what we want you to think about is that you have somebody that your working with who you know has identified vision loss, the best thing that you can do is send them to a low vision clinic. And then they can test the different magnifications. Carol's glasses were 1.5 times. For me I would need more than that. That barely put a dent in helping me out. But I would need bigger. So we want to get into your vocabulary low-vision clinics. There's several around and getting the right equipment is really important.

The other thing is large print. If I wrote any of you a letter today, on my computer, I never type under 16 font anymore. I do it partly for me because I'm over 40. But I do it partly because it's easier to read but one thing that I do is I ask people that I work with, what font do you need? Now, Michael, since we work together, I know he needs 16 font. He likes it bolded so I bold everything, even if I send something to you, Nick, and you're a lot younger, I still bold it. And I use Arial font, a-r-i-a-l, because that's Michael's prefered. Most people I know that is their preference. But it depends on the font. Dorothy I know told me she prefers 20 for the. So part of your task --

>>Dorothy:  no, no, no.

>>Cathy:  wrong font?

>>Dorothy:  not 25.

>>Cathy:  I said 20.

>>Dorothy:  18 to 20.

>> 18 bold, 16 regular. I've got them all.

>>Cathy:  Vanna is helping me keep track of all your font levels. But the point is you ask the person your working with. To send out letters in regular print font, for those of us over 40, it's tough to read. Even when I send something to Nancy, again, I send it bolded 16, Arial so it's something that you can all do really simply on your computer. I have a magna cam over here. I'm going to go through some of the technology that I have. A magna cam is one of the more low-tech devices. I don't have it hooked up. What it is is a device that can read in large print like a closed circuit TV. This is a closed circuit TV. Is that on? Okay. This is on right now. You can switch. These little puppies cost anywhere from $2,000 to $3500. Depends on if you have color or not. This is a black and white one. You can change it from white -- what's it on right now? White letters? A lot of people that we work with prefer black background with white letters. Again, that's a really low-tech easy thing you can do on computers. Just change the background. We're all used to white background with black letters. Actually, for most of us this is easier to read. It takes a little bit of adjustment but when you have low vision issues, a lot of times people prefer that. So it's finding the right adjustment. There's an adjustment on this side that can make it larger. The magna cam is basically the same thing only it's hand-held and it hooks into your TV. And with this, I can scan a book, I can scan a can, I can scan a lot of things and it would hook into my actual TV screen. These run in the $600 and $700 range. Something talk to me. You had your hand up.

>> Yeah, I was wondering, do you have portable type of this kind of machine? I know post people tend to be reading on the road, driving or taking a train somewhere, commuting, not actually sitting at home reading the screen. So do you have some kind of device that would be portable?

>>Cathy:  What the portable devices are actual magnifying glasses. Yvonne?

>> There is a -- I guess it weighs about 6 pounds that can be is portable. It will go anywhere and uses batteries and stuff like that.

>>Cathy:  So --

>> Is it a laptop compatible? Can I hook it up to my lap to be -- top?

>>Cathy:  no. What she's talking about is a machine like this. The CCTV, closed circuit TV. But it's much smaller. It folds into a case about the size, a little bit bigger than this. And it weighs 6 pounds. And that runs about how much? Do you know? $3,000.

>> oh, okay.

>>Cathy:  This little sucker is not portable. The commission, Yvonne's office let us borrow it but this is stationary. This is a desk top model. And the other thing about this is that your -- you can move around what you're reading. But it doesn't read everything well. Like it doesn't read cans very well, round surfaces it doesn't read very well. This one's not color, either. So you're not seeing color. John had some pictures of his kids that he put those in there they would turn out black and white. The magna cam is a little more portable because it can plug into any TV set. It's a lot cheaper. But you have to be plugged into a TV set to do it.

We're just going to show you and also we're going to try to do this just show you some of the main things. But what we want to get into your heads are just the importance of, if you have low vision, how important it is to have you read your own financial bank statement. Versus asking a support person. Can you tell me what my balance is? Wouldn't it be much cooler if you could put it on a CCTV and know your own balance without the world knowing? The trust issue comes in. And a lot of people have to deal with that every day. You know, they talk about Helen Keller national awareness week, a lot of deaf-blind people don't particularly erase Helen Keller herself because the issue was that Helen Keller doing all the work or was it Annie Sullivan, her support person? Most people I know don't have a full-time Annie Sullivan with them. So they want to be as independent as possible. But if rehab is balking at saying we can't spend $3,000 on a CCTV, you know, again, it's that whole, the psychological part of being independent and doing things as much as you can for yourself.

This little baby is called a Perkins Brailler. It's about as old as they come. And you put paper in, you basically can type a letter. I've had people type me letters. I typed letters to people using this. It just simply types Braille. These cost about $700 or $800. I forget. They still make them and service them. And that's a just a portable heavy device. Commission let us borrow theirs so we wouldn't have to drag it from San Diego. This is a telebraille machine. And also I want to tell you all I'll just going to talk real briefly about what some of the array of stuff we brought. And then after John Reiman's finished speaking if anybody wants to come up and test some stuff out we'll plug it in, we'll let you play with it more but we decided to save that to the very end because if you don't wanted to do it then you can be gone at 5:30. We're always thinking ahead. This is a telebraille machine. And basically it's a TTY with a Braille output. I think it's 20 cells, 18 cells. They no longer make these. Huge issue. California still has some left. I think North Carolina stockpiled a few so we've been borrowing the state of Arizona just borrowed one from North Carolina. Supposedly, they're making a new machine. But 23 if you were dependent on telebraille, if you use Braille, you want to make your own phone calls and you were dependent and you found out they were no longer making this machine, what would you do? The emotional impact for the community a couple of years ago when this company told everybody that they were done making them was huge. This machine cost about -- $8,000.

>>Cathy:  They used to be $5500. They've gone up since they were out of business so supply and demand. But you know, in the state that I live in, this is part of the repertoire of what they give out for free for people who are deaf-blind who need things. Not every state gives telebrailles out. Not every, you know, one of the issues is some of the states no longer have them available. But again, it's something, and again, if you're talking to somebody who's using a telebraille and you have a TTY or your using --

>>Who's talking to me?

>>Cathy:  We're doing that one next. The Braille light? Okay. If you're talking to somebody, one of the things I always keep track of is who I'm talking to that uses telebraille. I type slower. Most people I know can't read at warp speed. And I can type most of you can, too, if you have been around deaf people you type at warp speed. If you're talking to somebody whose just reading 18 letters at a time that's continuous, and they can't backtrack and read over again it's very difficult. So keep track if you're working with somebody who uses one, be sensitive to the speed at which you're typing.

>> Question about that. I have a friend who does use one of those and sometimes I couldn't get what she said. And so I'm wondering does it keep in a buffer somehow what you said so that they can control the speed at which the Braille is coming to them? Or is it just coming faster?

>>Cathy:  --

>> This is Nancy speaking. It was design forward two purposes. Mainly for telephone purpose, for TTY for people who read Braille. It's also used for communication device for two people. They use two things come apart. So the regular keyboard is over here and the Braille display it over here for the deaf-blind person to be reading the Braille. There is a way to unlink, is what the term is, these two machines. So I as the hearing sighted typist can type at warp speed and it stays in memory in this part and the person can read at their own snail pace because there's only 18 cells. If the two were linked as soon as I got to the 18th letter of my typing it would disappear and start back at the beginning again but when you unlink them it stores it in memory and when the person got to the end, they just press the button over here and it goes to the next 18 cells.

>> Over the phone, is my typing speed affecting their reading speed? How's that working?

>> Not if they know how to unlink the two portions of the machine, no, they can read at their own speed.

>>Cathy:  and also, then you have to know that there's going to be a delay. There's going to be a lag. So if you're okay with that lag, there is this long pause before they answer you back, that means they've done just what Nancy said. The other thing that we try to help people who are deaf-blind that use telebrailles do, make sure that every operator, relay operator that they're working with knows that they're using a telebraille and to type slower. Even the fastest Braille reader I know you can't type your normal TTY speed with them. Okay. The new technology that we've heard about for two years and we've yet to see it, is that they're using a Braille light machine which keeps talking. Coupled with the TTY. Now, for the past two years, they're saying it's going to be out in three months, and it will be postponed, it's going to be out in December. Last I heard it was going to be out in December 2000. It's now April 4th, 2001. It's not out yet. You want to talk about that one?

>> this is Nancy speaking. This is called the Braille lite. It has -- what is this? Is that why -- anyway, it's a mini computer. It's a word processor note taker for persons who use Braille. It has Braille output and it also has voice output which I will demonstrate in a second. So the blind person who is taking notes in a classroom or in a lecture is typing them with the six Braille keys. It can save files. It can retrieve files just like a regular computer. You would name your files and go back and find them. It's also a calendar, a time teller, it's a calculator, it has very many functions. And it has a port back here where you can hook it up to a computer at a later time to save your files to a desk, to take them to a printer. I will demonstrate for you if someone had enough, it's about $5,000. If someone had enough hearing that they could use voice output, this is what it sounds like.

>> no, no, no, no.

>>Cathy:  cancel that.

>> 94. Braille lite. Option.

>>Cathy:  did you get that?

>> Wednesday, April 4, 2001.

>> Wednesday, April 4, 2001.

>>Cathy: One thing about it you really have to get used to this speech. It's not an easy thing. With any of the, you know, new communication voice output, they're all sounding robotic.

>> During your workshop this morning, you were talking about Braille. I'm wondering how many of you use Braille. You said it's like a dying art.

>>Cathy:  We still, in the field, say that less than 10% of people use Braille. But that 10% who rely on Braille rely on it very much. And I can't believe the one thing we didn't unpack was the Braille display that goes in front of the computer. It was in one of those black bags. And that was the thing that I said if you had a regular computer, you and I would just be typing away. We look at our screen. It's a little device, smaller than this, it's a little strip of Braille. It comes in 40 or 80 cells. That's 40 or 80 different letters. It runs about $10,000 for the 80. That's not counting the computer. But for that 10% of people that rely on it, it's so essential. Here it is. That's how small it is. And thats how much it costs. And people shake their heads and supervisors at rehab go, oh, we can't afford those but if you rely on it and you want to be independent and work a job that has a computer, it's essential. So that's why we want you to guys to just have a little taste of the technology so you get a feel for it but also understand how much it cost. We also do a ton of stuff that is very, very cheap, very cost effective. Like one of the things, if I'm setting a white table, I use a dark place mat. And on the dark place mat I would set a light colored plate. And then I would put the food on the plate. Low tech solution for somebody with low vision. I also wouldn't give them a clear glass with water in it because you can't see the glass. I would use a colored glass. There's a lot of little things that you can do that we can teach people that are low vision.

But again, the Braille stuff isn't cheap. But it's so essential for the evening though that's a small percentage of people that use it its so essential. And on that note, one of the things that we want to do because we really want to talk about resources, we have given you like a tiny little taste of technology. John Reiman's going to talk about, if you're working with somebody and you don't know, you know they read Braille, you  wanted to know or they want to learn Braille, where do you go to find out about it? So what I would like to do instead of belaboring some of this, is let John talk now about resources, and at the very end when he's finished, what we'll do is have time for anybody that wants to come up, we'll demonstrate any of the equipment for you. And on that note I'll going to turn it over to John but I'm going to find his program first. Acuity.

>>John:  hi. I'm John Reiman and I'm here to talk.

>> Hi. I'm John Reiman and I'm here to talk to you about resources. I'm going to do that several different ways. First a comment about resources. I'm going to talk to you about information and where to get information. But what I wanted to start by telling you I think there's probably no substitute for experience. Direct experience with deaf-blind people. How you get that varies and what kinds of settings you get that in I think varies. But I think it's probably the single most important piece to live with, to hang out, to play with. To have contact with deaf-blind people. 25 years ago I had the good fortune of moving in with a family who were deaf-blind. And I lived with them for four years. And that's where it all started for me. Came out of that situation and got a CSC and did a bunch of stuff which has really held me in good stead for the 25 years after but it all started with a direct experience so I think there's probably no substitute for that.

Okay. Resources on deaf-blindness. I'm going to approach it really from what are some national, regional and local resources. I'm power point-new myself. Keep pressing this one? Okay. First resource, DB-Link. A brochure to pass out. DB-Link is the National Information Clearinghouse on Children who are Deaf-Blind. It's interesting talking to a group who are focused principally on older adults because the resources for older adults don't really match the resources available to children. In the United States there are probably somewhere between 10 and 11,000 children, birth to 21, who are deaf-blind. For that group, we have, on a regular basis for the past number of years, had $12.8 million available that's funded services in the area of technical assistance, research, dissemination. There's a state project in every state. There are active family groups across the country. So resource wise, the birth to 21 population has a high concentration of resources. DB-Link is funded for the birth to 21 population. Just let me tell you a bit about what DB-Link is. We have been going for eight or nine years. We are a consortium involving the Helen Keller National Center, the Perkins School for the Blind, Teaching Research in Oregon, American Association of the Deaf-Blind, and National Family Association of Deaf-Blind. Together, we are DB-Link and what we do is respond to inquiries, inquiries that are sometimes, gee, tell me, I have a student studying deaf-blindness. Can you send me a packed. Easy answer so we have packets that go out. If you received our packets at all you will know some of them are basic. Then we get packets and calls on a regular basis, my child was just diagnosed deaf-blind. Yesterday. Please help. What do I do? So respond to that kind of inquiry. From teachers who are in classrooms with deaf-blind children. Help. I have a deaf-blind child in my classroom. Where do I begin? Now, to answer these inquiries, we have a staff of information specialists who are highly trained folks who conduct pretty lengthy interviews with people inquiring for information to find out exactly what it is they want. And then we go about responding to those inquiries. How? We send information. We have databases that we've developed. If you have ever been to our DB-Link website, very in depth deaf-blind focused websites. Principally child focused but with a huge amount of information relevant to an older population as well. We also publish quite a bit. We publish things called basically fact sheets and publish things as straightforward as overview on deaf-blindness, which is a pretty straightforward explanation of a lot of issues related to deaf-blindness. And we also like publishing more esoteric things. I have recently done one that is considerably more abstract but very interesting and engaging called "the importance of hands for the person who is deaf-blind." so we publish a lot of materials as well. We also publish a newsletter that comes out on a regular basis. And this is called Deaf-Blind Perspectives. How many of you have seen it? Okay. Some. We publish this on a regular basis and all these materials are available in different fonts. They're available in Braille. We send disks out. And we get requests from all over the world and we have rapidly increasing number of requests, people accessing our databases and requesting materials from us. The issue I'm passing out to you now is an issue relevant to what we're talking about here. The lead article in the fall 2001 issue is "the group for students with Ushers Syndrome, South Louisiana." so we solicit articles and we also have people coming to us requesting they write articles. The thing about information, and I don't know how to say this, I guess I'll just say it. My experience has been as a practitioner and as a researcher and now as an administrator, in areas related to deafness and deaf-blindness that was an awful lot of recycled conventional wisdom about deaf people and about deaf-blind people that's not written by or coming from the perspective of deaf or deaf-blind people. It's been around for a very, very long time. And that has within it some notions about the needs of deaf and deaf-blind people that aren't reflected of, a, the actual life experiences of a lot of people living in the world right now; b, that don't reflect very much good research in terms of really looking at things from a different perspective; and, c, materials that aren't often useful right now. So information and everything is we have in the databases that we publish useful? We would hope so. But we're not screening everything either. We try to make a lot of materials available. How do you contact DB-Link? On the back side of the little brochure you'll see an 800 toll free voice line. We also have an 800 TTY line. And then you can call DB-Link from 9 to 5. Again the types of inquiries we respond to, even though our funding its birth to 21 we're bleeding over into a lot of issues related to children who aren't children anymore, kids in their young 20s, transition age because as the population begins to get into more services, post secondary education, more employment opportunities, the world is largely saying, well, gosh, what do we do? How do we deal with this? There is not a DB-Link counter part dealing with the adult population with the exception of the Helen Keller Center that does a remarkable job of providing information relative to that population. However, the Helen Keller National Center, and if you look on the back of this, we have a little practice that says, given DB-Link's specific focus on children, if you have questions related to adults who are deaf-blind, contacted the Helen Keller National Center. That said the Helen Keller National Center doesn't have the $400,000 a year that DB-Link has to run a specific national information center. I guess I would like at this point to call forward that beautiful graphic that's relevant. So Helen Keller, I'll give it to Cathy for a second.

>>Cathy:  I just wanted to tell you really briefly what we do. We have ten regions in the country. Dorothy is a regional rep for the northwest region. I used to do that same job. I'm the regional rep for southwest region. For me I have Hawaii as one of my states. Poor me. Somebody has to do it. What we do as regional reps is basically advocacy, resource, we do a ton of training like this. We get called in on cases. But the one thing we want all of you to think about and what's in your packed, we have a national registry of people who are deaf-blind. And we included a short form if your registry that what we would ask you if you're working with somebody that you know has both combined hearing-vision loss and with their permission, if you would ask them to fill out the short form or help them fill out the short form, we have it set up so it's sent back to Dorothy. Since most of you are in Dorothy's region. Because one of the issues is, we should know about a million people in the United States. I think the last count we had about 12,000 on the national registry. The more that we have the more money, the more services we can use to develop for this population, which is a huge issue. The other thing I want to tell you about is we have our national training center on Long Island, New York. People that go there, students that go, we take 42 students at a time. Generally, funded by vocational rehabilitation. It costs $550 a week to send someone there. For room, board, evaluation, training. After the initial eight-week evaluation, what we do is a conference call with the team. All of the teachers at Helen Keller, the student, the team back home, and the region a.m. rep, and a decision is made whether the student needs additional training. Generally, people stay about nine months. Some people much less. Some people longer. So if you have a student that is highly independent and they want to go really to focus on technology, and focus on learning Braille, their state probably would be shorter stay would be probably shorter. Our training periods are 13 weeks at a time and again at the end of the 13 weeks we'll do a conference call with everybody involved. And make a decision should there be extended training. But what we really look for first, I got to tell you, I was regional rep in Seattle for seven years. I never referred one person to the National Center. And it wasn't because I didn't believe in the National Center. I think we have a great program. But at the time we had some pretty great services in Seattle. In Idaho even. In Alaska. And in Oregon. We're finding out about more and more people with diverse needs, and sometimes we can't meet everybody's need in their home community. Home community training is always our first option and it's always what we will help connect you with. And if that means Dorothy or I going in and doing training with the service agency, we can do that. But if all else fails, what we do is have a person look at the national training center in New York. Right now there's about a one-year waiting list to get in. So if you even think you have somebody that might need to go to New York for training, what I generally do is have people fill out an application, then what it does is give us a year to look for community resources. And at the end of that year, we don't have them, let's look at the possibility of sending that person for training in New York. We also have a summer teen program, eight-week evaluation, and a two-week orientation for teens. So if you wanted to know more, we've got Dorothy's name on the website. We've got her e-mail address. Please contact us. For us to come into your region, it's no cost. Just as DB-Link, there's not a cost. We're federally funded. The only cost for Helen Keller is for a student to actually go there for training.

>>John:  thanks, Cathy. NTAC, another resource. If you know of children who are deaf-blind in your state, they are able to, through the state, contact this national technical assistance consortium. And in your packet, as a contact person for several of the states. What is NTAC? The government provides four NTAC about $1.5 million a year for assistance to children in states. What kind of assistance? Technical assistance that would, for example, help a classroom become accessible to deaf-blind children, to change overall systems and how open they are to working with deaf-blind children. Each state, each state also has a deaf-blind coordinator for the birth to 21 population. And this person provides consultation, information, referral, technical assistance and so forth. Here's a key piece. I've told you that there's this huge amount of resource dedicated to children birth to 21. When we look at the population of deaf-blind kids birth to 21, a huge percent of that group, maybe 80% or as many as 80%, have additional challenges as well. Some of them have cognitive challenges. About 80% have additional or secondary challenges in addition to deaf-blindness. Okay? The difficulty comes with once you leave the birth to 21 group, what kind of resources do you have? Helen Keller is a phenomenal resource. But there's not, for example, someone in each state. I suppose within VR or within bureau for the blind, in many cases there are people able to deal with and serve those folks. But I don't think that there's a huge budget to go with it. Or a national set of resources to go with it. I guess what I would love would be if there was some way you were to leave here and cohese into a lobby able to try to impact government sources to get the same level and types of services that the kids have gotten. Why do the kids have so much more in the way of services? Largely I think because of their families, their parents who are a huge lobby. What voice do deaf-blind adults have in the world in terms of self advocates? Well, I guess if you look back at how you've been enculturated as a deaf-blind adult -- deaf-blind child, you haven't really learn add great deal through your schooling and being in a family who's probably more hearing than not to -- of how to self-advocate and how to self determine. It's another topic but I would love to see as much resource available as there is to kids. And there are some resources in the states for that. National family association for the deaf-blind, this is the national organization of families pretty much families with -- well, I guess families with children of all ages, really. A lot of them are in the birth to 21 zone. But this is the national family association. Of children who are deaf-blind. There's the contact information. And they have a website, too. For those of you who like the internet, through DB-Link, we have a number of listservs. How many of you know what a listserv is? So a listserv is an opportunity to network on the computer, and we have an e-mail connected, to, with people from all over the world interested in the same thing and looking at the same kind of needs. And we have several of these. We have one called a DB-list and if you want to see what it's like, just look at instructions in the handout you have. Leave the subject line blank and try it. Down load it. It doesn't cost you anything but you become privy in a heartbeat to what the dialogue looks like between deaf-blind people, their service providers, their families, it's not to say that there aren't, of course, lots of additional dialogues going on off the listserv but this listserv is extremely busy. There's also an Ushers Syndrome listserv, particularly people with Ushers Syndrome. National organizations. American association of the deaf-blind. How many of you have heard of AADB? Okay. So not everybody at all. American association for the deaf-blind is the national organization for people who are deaf-blind. What does the organization do? Well, increasingly, it is serving as an opportunity for deaf-blind people to come together every couple of years for an incredible convention, a convention probably unlike anything that you've ever been to. You basically live with deaf-blind folks, several hundred of them and probably -- I think the last one there were maybe 300 deaf-blind people and 700 or 800 support service people so about 1100 or 1200 people and you can really go and volunteer with any level of knowledge or expertise if you're a typist you could actually type much like the person here is typing. You could go interpret. You could go and play. It's a remarkable experience. And I think that for anybody anticipating having contact with deaf-blind people, it's a great first step. AADB is also hopefully going to go in the direction of being a lobbying agent and trying to up the level of services available to deaf-blind people. We're having some conversations now. DB-Link has a contract with AADB and AADB under that contract is now develop act mentoring program. A mentoring program so that deaf-blind adults are able to teach leadership skills and work with younger deaf-blind people. Two other resources are self-help for hard of hearing whose address and website we have there as well as the association for late-deafened adults and again with these, if you have a computer, drop in on their websites. There are also state consumer organizations related to deaf-blind people. Example, deaf-blind people of Oregon and Washington state deaf-blind citizens, which I think is one of the most active in the country. Aids and devices, here's a catalog that you can get by calling an 800 number. And you can get a look at an incredible number of very neat products, well-described and easily accessible. And another company, too, called Maxiaids. So let me just check in with you. Resourcewise, I guess what you've seen are some examples of the kinds of publications DB-Link does. Some listing of the kinds of possibilities there are as far as places to contacted. And I guess my imploring you to find whatever means you can get to get progressively involved with people who are deaf-blind. I think you'll be very surprised at the level of receptivity you meet from deaf-blind people who are -- you know, I told you 25 years ago I walked into, I was in Tallahassee, Florida, and I was working as a therapist in a state hospital and there were a lot of people hospitalized, in fact, there were 85 in this hospital. I thought that didn't make any sense. So I went to a meeting of the Tallahassee Association of the Deaf. I didn't know a sign in the world. Just wrote things like on a little notepad. I want to learn sign language. How do I do it? Where do I go? And just lucked out because the people I wrote to, their daughter was moving off to college and he was deaf-blind and she was deaf and they were the president and vice president of the Tallahassee Association of the Deaf and they had an extra room and I moved in with them and that was it. And I can't tell you how much of a value I place on that early, on that early experience. And continue to at every opportunity. Mitch Turbin, you may have met him. He's a deaf-blind man here in Portland. Stopped by earlier and asked that I highlight for you -- I don't have enough of them to pass out, the availability in Oregon -- I guessing you don't have to be from Oregon to go to deaf-blind camp May 4th through 6th. And here's an application. Deadline if you didn't want to wait and go to AADB here's a great opportunity to get involved locally and Mitch has also put his business card in here. So one other comment. Internationally, the amount of traffic DB-Link has seen in the last year is just growing exponentially. In fact, we've had people come from the Danish Center that parallels what DB-Link does. And the Nordic Center and increasingly, the world is beginning to share resources and I would have thought ten years ago that we were probably more sophisticated just because of my own I guess American enthocentricity or just that we know the most but it's been lovely and refreshing to find out how complimentary the information throughout the world is. Fourth of July Jordie Xena.

>>Cathy:  my daughter and dog.

>>John:  I think that's probably a subtle reminder. Thanks, Cathy. I guess your ready. [ laughter ] okay. Thank you very much. [ applause ]

>>Dorothy:  thank you, John. You did a wonderful job. Always, always, always good job.

>>John:  thank you.

>>Dorothy:  did you take my agenda? Okay. I got it. Thank you. I'm supposed to memorize this but I didn't. Okay. I think that's finished. What I would like to do right now is we are going to have wrap-up and then we're going to have our time for any questions and answer if you have any questions now is a good time to ask all of us. Any one of us. We have really given you a lot  of information today. Maybe you're overwhelmed. And I hope you learned something today and I hope you enjoyed yourself also. We have an evaluation form. Please fill that out. We have technology equipment there if you wanted to come up and practice anything you have. If you are tired and you wanted to leave, that's fine. Wherever you want. We will see you around. Tomorrow afternoon, time, 2:30 to 3:45, I think, myself and a woman from Seattle agency called deaf-blind service center, Nancy sommers, she and I will give a presentation called "support service providers and interveners." so if you are interested in learning about that you are welcome to come tomorrow afternoon. Thank you for coming today and hopefully we see you again around. If you have any questions to ask now is a good time. Everybody's tired. [ laughter ] okay. We have one.

>> what time is the conference tomorrow?

>>Dorothy:  starts in the morning I think 8:30, I think. Oh, the presentation? In the afternoon, it's 2:45 -- no. It's in the schedule. I think 2:30 to 3:45. Okay. Thank you. Thank you. 2:30. Finished. Deaf-blind people, we do -- for applause. Thank you to Michael, Cathy and John Reiman for their presentation today. And thanks the interpreters. I had so many interpreters I can't even count them.

>>John:  we love interpreters.

>>Dorothy:  that's a good question. Put them on the table over there.