DEBRA: Hello, my name is Debra Kahn and I am deaf-blind. I’m a white woman. I have medium short brown hair. I’m wearing glasses and I’m wearing a blue sweater top. I’m one of five children and I have four brothers, no sister. I’m the fourth in the family. My two oldest brothers are both hearing and my two other brothers are deaf-blind. So in total there are three deaf-blind children in my family. My parents are both hearing and sighted. The older siblings who are hearing and sighted and my parents never learned sign language. But of course the three of us who are deaf-blind did use sign language growing up. I have what’s called RP (retinitis pigmentosa), and I also have hearing loss. It’s a genetic condition called Usher syndrome.
INTERVIEWER: Do you want to talk about where you and your family live?
DEBRA: I’m currently living in south Seattle. I moved here in 2015. Prior to that I had moved many different places. I won’t go into all of them, but I was married to a deaf man and we have two children together. Both are hearing and sighted and both have been able to sign since they were infants.
INTERVIEWER: What is your experience with disability and deafness? How do you identify and has it changed throughout your life?
DEBRA: It certainly has changed throughout my life. When I was born, I was actually hard of hearing and at the age of 12, I became profoundly deaf. I wore hearing aids all my life. I started using speech and some lip reading and used my residual hearing to communicate with my family and later learned sign language. So at that time I labeled myself just deaf. I wasn’t aware that I had blindness until I was older. I think it was around 13 when I first learned about the RP, but at that time I still identified as being deaf because I could see fairly well. So I was involved in sports and other activities. When I was in college, I met some deaf-blind people. So I learned a little bit more about what Usher syndrome was and how that impacted people. But I never culturally identified myself as a deaf-blind individual until much later. That probably didn’t happen until about 10 years ago. My younger brother lives here in Seattle as well. So prior to moving here, I would come to visit him and learn about the deaf-blind community here. And around that time I started using my white cane to get around. So I started to develop that identity as a deaf-blind individual. But prior to that, I felt like I was on the fence between being deaf and deaf-blind. But now I consider myself deaf-blind.
INTERVIEWER: And do your brothers who are also deaf-blind have a similar trajectory of identity? How did you guys talk about that as kids or as young adults?
DEBRA: We each had a different trajectory. My older brother is three years older than me. My younger brother is four years younger, so the process of our vision loss was quite different. We didn’t follow the same path. My younger brother moved here to Seattle, and mind you, Seattle has a very large and active deaf-blind community, so he became more involved in that community and developed that identity sooner than I did. So I’d say that probably he started first in gaining that identity. My older brother lived in Pennsylvania and I was living in Maryland at that time, so we had more limited interaction with deaf-blind people than my younger brother. But I know that in Maryland I did attend a deaf-blind club on occasion. So I was sort of in that transition phase before I actually moved to Seattle. But later I felt more comfortable with that identity for myself.
INTERVIEWER: How do you think your childhood impacted you? How did your parents interact with your disability and your siblings’ disabilities?
DEBRA: My parents later in life admitted that they wished they had learned to sign much sooner. I could speak somewhat and lip read to some extent, but now with my current vision loss and not having seen my family that often, when I do visit, it’s much more difficult for me to lip read my brothers, for example. My mother has since passed away, but my father and my older brothers have often said they wish they had learned to sign so that we could have all participated equally in the family interactions. Mind you, me and my brothers who are deaf-blind, when we all learned to sign so we would able to communicate with each other. But I find that a lot of deaf-blind friends who have siblings that are all sighted and hearing and don’t learn sign, those deaf-blind individuals feel very isolated in their families. So I didn’t necessarily have that as much. But at the same time, I was encouraged to get involved in different sports by our parents. I lived on a farm, so I would go horseback riding and bike riding and one thing I really appreciated was that they encouraged us to do the normal things that kids do. And now when I meet parents who have deaf-blind children and they ask me what is the biggest challenge and what should they do, I would encourage them to find a way to communicate with their family. Another challenge is of course, I can’t drive anymore. We’ll put that aside. That’s sort of a separate issue. But that does make things more difficult. So I guess I would say communication is the key for any family.
INTERVIEWER: What would be your advice for parents of deaf and deaf-blind children or children with any disability? Do you have any guidance for parents who don’t have exposure to disability or deafness?
DEBRA: Well, as an example, my parents didn’t know my older deaf-blind brother was deaf. When I came along, they noticed something was wrong, they knew I wasn’t able to hear them well, and they took me in for a hearing test. Nowadays, there’s infant hearing screening. So that’s very good that hearing loss can be identified right away. I would encourage parents not to be afraid because the community here, we are normal like anyone else. You might take for granted your ability to hear, may not think about the value of vision, but I think the importance is first just make sure that you are able to communicate with your children in whatever form that takes. Some people assume that a child given hearing aids or cochlear implant will automatically have access to spoken language. And that can be true for some children, but not for everyone. And long term, you never know what will happen. The dog will eat the hearing aid, the cochlear implant breaks. And then how do you communicate with your child? They’re still deaf. So I do encourage parents to learn sign language, still using speech if you care to, but do learn signs so that you have access and can communicate with your child using both methods.
INTERVIEWER: I have a question around transportation, and this is something I think about with my own parents, but I grew up in a relatively rural area and not on a bus route, and I think a lot of my rebellion and anger towards my parents came from feeling very trapped as a teenager because I couldn’t get a driver’s license and wondering, had I grown up in a more urban area where I’d had access to transit, would it have been easier for me? Would you go that far to recommend to parents (especially parents of deaf-blind kids) to try to be somewhere they can have a sense of independence?
DEBRA: For children who are disabled, when they’re young, maybe it doesn’t make too much of a difference as to where you live, but when they are old enough to go out and interact with friends, then the story changes a bit. For myself, I grew up on a farm, but there was always something to do. So I never really thought about going out, going to town, except perhaps going into school, and there I had a social life, and I rode the school bus there, so I don’t know that it impacted me as much. But when I was a teen, I actually attended the deaf school, the residential school. I had the social interaction living there, and yeah, of course when I was driving, I took driving lessons from school. I was able to drive around my home area a little bit. It’s funny because since having moved to Seattle, I just realized how much I love the city life. I don’t know if it’s because of that background or because of my disability, but I think it’s important for parents of disabled children to keep in mind that when their kids are at the age where they would naturally go out on their own, it would be nice to have something nearby where they can still kind of maintain their independence. You don’t want to hold them back at that point.
INTERVIEWER: Yeah. Talk to me more about going to the deaf school and how that decision got made and how you felt about it at the time?
DEBRA: It really was my wish because I grew up in public mainstream schools as the only deaf kid in the class. There was no ASL interpreter for me at the time. It was very big challenge. By the time I reached eighth grade, I was completely fed up. My older deaf-blind brother had already started attending the deaf school and luckily, we met some deaf kids in our very small hometown, but it just so happened there were maybe eight or 10 deaf kids in that area, in my hometown, and some of them attended the deaf school as well. So having visited, and I saw all of the children and parents signing, I knew that that’s where I wanted to be, and thankfully our parents let us go to that school and it was wonderful. I felt like I had freedom, I had complete access to communication, there was no misunderstanding, I had close friends, so I was actually really happy to be there. And after graduating high school I went on to Gallaudet University in Washington, D.C., which is a deaf college, so I had that same access. I very much enjoyed being there.
If I had been the only deaf-blind child in the family, I know it would’ve been a very lonely existence and much more frustrating. I think that’s a very common theme in the deaf and deaf-blind community, is those who experience deafness or deaf-blindness as the only one in their family are just so isolated. Many people don’t have the patience to explain to a child what other people are talking about. They don’t take the time and the child completely misses out on what’s being said. Even with a hearing aid or cochlear implant, it’s not enough to gain full access to communication. It requires a lot of patience to be sure that a child is getting that information. So you really have to consider, now I wouldn’t force anyone, but I strongly encourage parents to learn American Sign Language so that their child can have that full access to what’s going on around them in their native or natural language or visual language. That’s my perspective. My husband was the only deaf child in his family and he was always jealous of my family because of the fact that there were three of us who could talk with each other naturally in sign language, whereas he lived with his sister and his parents that were always speaking to one another and he always felt completely left out. It’s a huge topic in our community.
INTERVIEWER: Can I ask a very basic question, but I don’t know the answer?
INTERVIEWER: Can you talk about the relation between tactile signing and ASL? For folks who start out as low vision or blind, what and how do they learn? Do they learn ASL?
DEBRA: It really depends on the child’s level of blindness. I contract with Washington Sensory and Disability Services for the Deaf-Blind Project. And just to give you an example, I met a deaf-blind child who was four years old but had been born completely deaf-blind. That’s quite unusual and very challenging because that child had at that point had no access to communication, so naturally had to learn communication using a tactile method. Now, within the deaf-blind culture, there is a new aspect to sign language, which is called ProTactile. And that means we’re giving even more information beyond the language through touch. And that’s spreading throughout our community. So again, it goes back to the child and their level of vision when they’re young. When someone is growing up reading sign language through their eyes, that’s considered visual ASL. That’s what most people speak about when they think of ASL. Some people will use visual ASL and then also do some form of touch or tactile ASL in addition to the ProTactile or PTASL. The signs are the same between ASL and a tactile form of ASL. It’s just the method that’s used. I’m not completely fluent in tactile ASL. I’m still learning to pick it up, to really recognize the signs on my hands. It’s not necessarily a formal learning process, it’s more of a practice process. For example, at night I’m unable to see at all, so if someone is communicating with me, I have to depend on fully feeling the signs with my hands.
INTERVIEWER: Are there more things around parenting that you want to talk about?
DEBRA: Well, I thought maybe I’d share some funny stories about my own experience as a mom.
DEBRA: When my vision started to decline, I noticed that I was beginning to adapt to my environment. For example, I was telling my children, ‘Please don’t move certain pieces of furniture.’ For example, the coffee table, because as a blind person, I have that visual map or mental map of where things are. And if something is moved, my body’s habit is to follow a certain route and inevitably I’m going to bump into something if it’s been moved. So I had to teach my children, ‘If you move something, let me know.’ In the kitchen, I had a system set up as well, so I needed to have everything in its place so I knew where to find things. I also warned my children that we take our shoes off when we go into the house and we line the shoes up in the foyer. So I told my kids, ‘When your friends come over, please tell them to put their shoes close to the wall.’ Don’t just throw them anywhere on the floor because inevitably I’d trip over them, too.
My daughter, who is almost 27 and my son, who is 24, both shared with me that they now prefer to have closed captions on their televisions, even though they’re both hearing. And when I asked them why, they said they feel like without it, somehow they’re missing something. But with the captions they are following the conversation. They know they’re not missing anything, which I think is kind of cool. That’s just a natural adaptation that they picked up. Sometimes they tell me that their friends complain and they don’t want the captioning on, and both of them will turn it off, but reluctantly, when their friends are around. So I thought that was pretty funny.
Neither of them really ever felt embarrassed about having a deaf-blind mom. My daughter actually did a presentation for one of her classes at the University of Washington. She was taking a course related to disability studies and she decided she wanted to do a project about deaf-blindness and I thought was really sweet that she was so interested in exploring it more. And then my son recently went to Washington, D.C. and happened to run into my deaf-blind friend that was at Gallaudet University. And he started learning a little bit of the PTASL and he came back and said, “Gosh, I wish you had taught us a little bit more of that ProTactile method.” Unfortunately, I don’t see them as much now that they’re young adults, but I have to really discipline myself that when I’m with them, I will encourage them to use PTASL and I’ll teach them how, and we do that more one-on-one now when we’re together. So it’s very nice.
INTERVIEWER: That’s great. For a parent of a disabled kid, what can Support Service Providers (SSPs) offer once the kid becomes an adult and isn’t living at home anymore? How can these services support people to live independent lives?
DEBRA: Sure. So SSPs can either be a person who is hearing or deaf, but the point is that they have vision and they can support the deaf-blind individual. In some states they allow them to drive that individual, unfortunately in other states that’s not allowed. But let’s say for example, I receive my mail and I’m unable to read it. I could ask for support services for someone to come for an hour and read my mail and interpret it to me. Another example is that I am unable to read the labels on cans in a grocery store, so I’ll ask my SSP while I’m shopping to tell me what it says on the label. So if I need to avoid salt in my diet, I can ask them to tell me how much salt is in the food. And they will read it to me. So they’re giving me the visual information while I do the independent shopping myself. If I’m shopping for clothes, my ability to identify colors has become weaker. I’m not entirely sure if I’m seeing purple, let’s say, as opposed to blue. So I may pick up a piece of clothing that I like, but I’ll ask my SSP to tell me what color it is. I tend to like darker colors, so I will ask them to help me find darker colored clothes. If I want to do something enjoyable like going to the museum, I’ll ask them to give me some visual information about the art that I’m seeing. So basically that’s what SSPs can provide. It’s a wide arrange of visual information services that are given to deaf-blind people.
INTERVIEWER: I’ll ask one other question about parenting. When you found out that both of your children were going to be hearing and not disabled, how did you feel about that? Was there any sort of sadness? What was your emotional reaction to that initially and did that change at all?
DEBRA: My husband and I knew that our children would be both hearing and sighted, because he was the only deaf person in his family, which means it’s a recessive genetic trait. With Usher syndrome, both parents have to have the same genes in order for their child to potentially have Usher too. So we knew that it wasn’t possible. But we did agree from the beginning that we wanted to have two children. And my main reason for that was I thought, “If I had a third child, how would I be able to hold all three of my children’s hands? How would I be able to know where they are?” And I was too anxious about the thought that I might lose track of a child as they got older and became toddlers. So I have two hands, I have two children and I know they will remain with me at all times. So that was part of the reasoning behind it.
INTERVIEWER: Are there any other stories you want to share? Anything that I didn’t ask you about?
DEBRA: I’m thinking about the parents of a deaf-blind girl. I haven’t met the daughter yet, but the parents are obviously looking for help in understanding how to raise their child and they’ve chosen to use an oral approach with their daughter to speak and lip read. And I guess at this point, from what I understand, their child is able to do that fairly well, but I’ve also really encouraged those parents to continue to learn sign on their own, because when this girl’s vision begins to change and she’s no longer able to access the lip reading or the speech, they’re going to need something else to rely on, or if she’s not able to hear as well eventually along with the vision loss, they’re going to need to have another way to communicate. And I think that what’s very surprising to the parents, they never really thought about the fact that their child, who is now so dependent on lip reading, may not be able to do that in the future and that’s going to completely change her ability to communicate with them.
I had a friend, for example, who had a cochlear implant, and we happened to take a cruise. It was for fun. We were standing out on the balcony of a boat and someone came up and hugged him, and by mistake the external portion of his cochlear implant fell off and into the water. And of course he felt terrible about that, you know, but again, luckily he knew ASL so even though he completely lost any access to auditory information, he was still able to communicate because he had that basis of ASL. So very scary thought, but it’s still, it can happen. I also have two friends who I would consider more hard of hearing, and able to use some speech and hear fairly well, but in any environment where there was a lot of background noise, it became very frustrating for them. And I asked, “Well, why don’t you just learn sign? It would be so much easier in this environment.” And the response was just like, “Oh well, why bother?” But at the same time, it’s one thing if you can hear in a certain quiet environment, but what happens when you’re in an environment when you can’t. ASL is a great backup system for you. I’m also thinking for parents with deaf-blind children. I strongly encourage them to let their children do as much as they possibly can, to live as much of a normal life as they can. If they’re interested in sports, let them participate. If they want to be in club activities, let them do that. Don’t hold them back out of fear. Don’t place that fear on them because the fear can really take over. And I understand that.
I appreciate the fact that my parents just let us do a lot of fun things on the farm. They never stopped us from doing whatever other kids would do naturally, climb trees, you know. I have a lot of really fond memories because of those opportunities that they gave us. For those of us with Usher syndrome, sometimes the blindness doesn’t come on until much later in our lives, but for children who are experiencing full blindness when they’re young, I really can’t speak for them because that’s a completely different experience. But still, I think parents should feel comfortable with using tactile communication, or just the use of touch in general, to give their child some sense of their environment. I can’t say that I felt I experienced any setbacks or barriers. Well, one challenge I’ve noticed, just in communicating in the deaf-blind community and what I hear, is difficulties with work. I’m sure there’s a much higher unemployment rate among deaf-blind people compare to deaf people, even though deaf people themselves experience many challenges. So if you think about the long term goals and maintaining employment for a deaf-blind person, especially as their vision changes, that can be very challenging. Honestly, if I had to work full time myself, I’m not sure what I would do. I mean, there’s limited opportunities and experience that you get when you are working, and then also the ability to maintain that work as your vision changes is difficult.
INTERVIEWER: Do you want to talk a little bit about your sort of work career and the challenges you encountered?
DEBRA: Once my children were born, I became a full time mom. Probably about the time they were in middle school, I felt it was the right time to return to work. We were in England at the time, so I started working in the school cafeteria then. But when we moved back to the United States, because I have a psychology degree from Gallaudet University, I began working as a client advocate in a social service agency. Then I decided to return to school to get a degree in accounting. I have to admit, I’m not sure that was the wisest choice because eventually knowing my vision was going to change, how can I work with numbers and computer and small print, all of that? So that was a bit of a challenge. But I really enjoyed tutoring students who were learning ASL while I was there. So I actually went back to doing tutoring and teaching ASL and now I’m teaching ASL at The Lighthouse for the Blind. Some of those students are blind and hearing, some are sighted, but it’s really fun to work with them because they’re learning sign in order to communicate with their deaf and deaf-blind peers and other employees.
Then as I mentioned, I work with the Deaf-Blind Project with Washington Sensory and Disability Services and I love that. And the Office of Deaf and Hard of Hearing, the state office, on occasion will reach out to me and ask if I’m willing to or provide SSP training to those people who want to learn to be SSPs. And then also for people who are interested in becoming volunteer SSPs, I might just go and teach them one-on-one directly or with a group. So more and more of my work is really focused on deaf-blind people and deaf-blind issues now.
Now that I identify as a deaf-blind person, I’m much more aware of where those access points for me are, specifically when talking about tactile issues. Recently there was an art museum display with LEGOs and I had asked one of the people working there if myself or other deaf-blind people were able to actually touch the art and they told us, “No.” That’s a huge barrier, right? Some places are not tactile friendly. If you go into a jewelry store or something, everything is behind a locked case. If you can’t see it, the only way to access it is by touching it. And you may ask the employee if you can touch it, but there’s often signs that say, “Do not touch,” which is very frustrating. That’s become more and more of a frustration and a barrier for me as a deaf-blind person is wanting to experience the world but not being able to touch things. So we have to come up with other creative ways of providing touch access to deaf-blind people, and I would encourage parents to do more advocacy on behalf of their deaf-blind children because giving a description of visual information is not giving full access. So I would encourage parents to really speak to the people in charge and help make a change.