Personal Stories Transcript

[John speaking] My name is John Lee Clark and I am a second generation DeafBlind person. There are three members of my family who are DeafBlind. There’s my father, myself and my brother.

I grew up here in Minnesota and I actually still live here. I am married and I have three sons.

I have to say I often forget all about the fact that I am a DeafBlind person. It’s not something that I even think about very often until someone points it out to me. I’m not sure how to describe it because it’s just normal for me. I was born with good sight and then started really losing my vision when I was about twelve or thirteen. That’s when I started experiencing tunnel vision to the point where my actual identity went from being deaf, as I had been all my life, to being DeafBlind. That happened when I wasaround twelve or thirteen. It was a significant change in my life.

I think it was even further complicated because I grew up as a deaf child of deaf parents. I attended a mainstream school as part of a small program of deaf students. There were only around forty students, most of whom had hearing parents. This meant that their signing skills were generally weak and they often had difficulty communicating. This was not a problem for me at all, having signed all my life. Because of that, I easily took on a leadership role amongst the peers in the program.

I transferred to the residential school for the deaf in Faribault. Deaf culture and norms, plus a visually based environment, are part of the fabric of the school there. This was not the case at the mainstream school I was in however. Because of my strong signing skills and communication skills, I was able to assume a leadership position. However, I did not particularly follow all the norms of visual communication because I had limited or even decreasing peripheral vision. While my behavior was slightly different than my deaf classmates, it didn’t matter because they did not have the knowledge or expectation that I would respond to visual cues that are part of Deaf culture.

However, at the School for the Deaf, there was this assumption that I would respond to visual cues in the standard way a deaf person would. I could not do this because of the limitations in my sight so that the environment was actually not a great fit for me. Suddenly I had problems communicating and fitting in, so I lost the opportunity and motivation for leadership that I had at my old school. I became withdrawn, confused. My behaviors confused my classmates as well. For example, if one of them waved at me to get my attention, I could not see them unless they were in front of me. My failure to respond got me labeled as being a snob or standoffish. Even when I told people that I couldn’t or didn’t see them, they doubted me. Deaf people are acutely attuned to the visual environment it seemed impossible to them that I could not see something. These accusations were very unsettling as well.

At my old school, my behaviors were not considered odd, in part because they didn’t know any better. If I failed to respond to someone waving to get my attention, I wasn’t judged. They simply saw that as “John” behavior. This wasn’t the case at the Faribault school. The norms and expectations there were so embedded, that I had no choice but to give up identifying myself as a deaf person. If I didn’t I would continue to face failure and embarrassment. I was forced to accept both the label and identity of being “DeafBlind,” to own it as who I was. Tolet people know I was DeafBlindand that I had Usher Syndrome.

I strongly believe that it’s by accepting my identity as a DeafBlind person, I can get my needs met, but not everyone can do that easily. I was lucky to have my father as a role model growing up. He was DeafBlind, was involved in the DeafBlind community and exposed me to people and experiences that prepared me for my own future. The transition into using a cane, tactile signing, learning Braille was relatively smooth for me. I enjoyed learning new things. I wish other DeafBlind people could have a similar experience.

[George speaking] My name is George Failles and I'm a Senior approaching 85 years and I started out with a hearing loss, probably more noticeable when I was about five or six years old.

I went to a school for the hearing impaired, Jefferson School in St. Paul, and most of the classes were done in lip reading. I became somewhat of a skilled lip reader. But unfortunately today, being totally blind due to retinitis pigmentosa which is a genetic inherited disease, I am no longer reading lips or anything. I depend solely on sound and wear hearing aids.

Along with the rehab services from State Services, I got assistance in tuition towards my college degree. From there I went on to graduate school at the University of Minnesota, Institute of Agriculture. I got my degree in Soils and Agronomy. I worked as the first agronomist for Cenex back in 1955 until my disability retirement in 1978. I was legally blind starting in 1970 but with the central vision I had left, I was able to still read materials towards the late 70s. I had to use a magnifier to read my materials.

But for the first roughly 20 years, I was able to drive and travel through the whole Upper Midwest. Then I got myself connected with the Minnesota Seniors Federation in later years when my sight was pretty well gone but I still was able to work with both the Minnesota Seniors Federation and the Community Center. I did this work from 1983 until just about four years ago and I also worked as a Facilitator at the Community Center for Sight-Impaired Seniors. We had support group meetings once a month and we would have social workers come in and work on different aspects of self-care, techniques of daily living and so on.

I have a wonderful soul mate and friend, my wife, who has normal hearing and we've been married now for 57 years, this coming June. Oh, 58 years, excuse me. We've been able to manage quite well over the years. We have a home that we’ve lived in since 1953.

[Kimberly speaking] Hello. My name is Kimberly Williams. I am DeafBlind and originally from Indiana. I believe I was born DeafBlind. When I was about maybe 4 or 5 months old, my mother put me down in my crib to sleep. Then a gust of wind blew the door shut and my mother was certain the noise would have woken me up because I was a light sleeper. I cried very easily. However, when she came to check on me, I was still asleep. And there were a couple of other instances where I didn’t respond in a way that seemed quite right, so she finally brought me to a doctor and they told my parents that I was deaf.

My mother noticed that I had trouble walking in the dark. I was constantly bumping into things. And so she knew there were some other issues going along and so she decided to take me back to the doctor. This time the doctor said that I had “night-blindness”. Nothing was said about Usher Syndrome. But of course this was in the mid 1950’s so my parents just accepted the diagnosis of “night-blindness.”

I went to the Indiana School for the Deaf, which is a residential school. And at night, my friends would always run around and play and I couldn’t understand why I couldn’t do the same. It was clear to me I was not like them. I tried my best to join in, but I was always running into things and struggling to manage.

Over time, I got teased a lot. My friends said I was like a horse with blinders on. Because they would wave to get my attention but unless they were right in front of me, I didn’t see them. They thought that I was really stuck-up or something or cold. And I just bluffed and said “no, no.” I just didn’t see them, that’s all. Really I was as mystified as they were. I didn’t fully understand why I was different, why I couldn’t see the way they did.

I also found I had to sit in the front of the classroom just to be able to see the board. I wanted to be in the back getting into trouble with my friends, but I just could not see the blackboard from back there.

I knew that there was something wrong but just did my best to make it through. I did graduate and I got a job at a bank. I remember my parents being very concerned because I finished work at five and it was usually dark right about that time. And my parents knew I couldn’t drive at night. After much discussion we finally developed a system. I would drive myself to work in the mornings and during the winter months when it was dark at five, my parents would both come to the bank and one of them would drive my car home while the other one followed in their car.

Then when I transferred to St. Paul Technical College, I was ready to live independently in my own apartment. I told the landlord that I had night-blindness in part because I was hoping for a break on the rent. The landlord said well that he needed me to get a doctor’s note as proof of my condition. Well that was no big deal to me, so I went off to the local eye doctor and asked them to verify that I had night-blindness. Well the eye doctor looked at me and said they wanted me to go the University of Minnesota for some more tests. Then they wrote that I would become blind in six months. Six months? I was totally thrown for a loop. I asked the doctor if they were sure and they said yes, I would be totally blind in six months. I could not make sense of it really. I actually went kind of numb from the shock. The doctor asked me if I had any questions but I was so dumbfounded all I could do was say no.

I also became scared to go to sleep. I was always afraid that I would go blind overnight.

Over time, I started to understand what Usher Syndrome was. I started meeting more and more people who had it. I felt normal because my vision was still pretty broad. Good enough, I could drive, read the newspaper. Then I started to feel better about the prognosis. My grief diminished. I was able to get into a pretty optimistic frame of mind. Then I met my husband and we were married in 1980.

Gradually my vision did start to change. Where I once could read writing in pencil, I had to switch to a pen and then I had to switch to a black marker and I could only read if it was large print. Now I have a very narrow field of vision, about what I need to read the captions on TV. I had to give up my car, which actually I was happy to do because it was so stressful to drive.

I mean things just got more and more challenging – more and more difficult. Where I used to get together with my friends in large groups, I now could not track the signing from one person to another. I would miss a comment. I’d have to ask someone else to tell me what was said and I was constantly asking the group to slow down. Well, deaf people have no patience for that sort of thing. So I finally told my husband I wanted to socialize only with another couple so that the conversation could be more manageable and if there’s a routine. So I work at DBSM and know how to navigate that environment. I use the same transportation. I have gotten to know the area very well. I’m independent but it’s very different if I’m in an unfamiliar place. On vacation, I become much more isolated.