Deaf-Blind Reality

Living the Life

Scott M. Stoffel, Scott M. Stoffel

• Publisher: Gallaudet University Press
• Year: 2012
• ISBN:
  9781563685361
• Topic: Social Sciences
• Subtopic: Sociology
• Index: Social Sciences

Most stories about disabled people are written for the sake of being inspirational. These stories tend to focus on some achievement, such as sports or academics, but rarely do they give a true and complete view of the challenges individuals must deal with on a daily basis. For example: How does a deaf-blind person interact with hearing-sighted people at a family reunion? How does she shop for groceries? What goes through his mind when he enters a classroom full of non-handicapped peers? These aren't questions you are likely to find answers to while reading that incredible tale of success. They are, however, issues that a deaf-blind person wishes others understood. Deaf-Blind Reality: Living the Life explores what life is really like for persons with a combination of vision and hearing loss, and in a few cases, other disabilities as well. Editor Scott M. Stoffel presents extensive interviews with 12 deaf-blind individuals, including himself, who live around the world, from Missouri to New Zealand, Louisiana to South Africa, and Ohio to England. These contributors each describe their families' reactions and the support they received; their experiences in school and entering adulthood; and how they coped with degeneration, ineffective treatments, and rehabilitation. Each discusses their personal education related to careers, relationships, and communication, including those with cochlear implants. Deaf-Blind Reality offers genuine understanding of the unspectacular but altogether daunting challenges of daily life for deaf-blind people.

1

Family Reaction and Support

How a family responds to a child’s disabilities has a monumental impact on the child’s life. Often, a youngster’s ability to accept or at least cope with disabilities is a direct reflection of the family’s response to the abnormal circumstances.

For this section, I asked my contributors to discuss how their families responded to their disabilities during childhood. Please understand that these responses are not report cards for parents. It is equally important to discuss the good and the bad in this very sensitive area in order to offer insights to families who are dealing themselves with children who are disabled. One must also keep in mind that few families (if any) are fully prepared to understand and deal on every level with a child who is disabled.

Addressing the immediate medical needs of a child is one thing, but properly addressing the psychological and social difficulties that disabilities bring is a much more complex issue. As you will see, many families sought medical assistance and the advice of professionals. It is interesting to note that when families received poor advice from those professionals, they had little way of knowing it and proceeded to follow that bad advice to the detriment of the child.

Sensitivity and love are crucial in helping the kids survive and cope. But understanding is another important factor that some children who are disabled don’t get enough of. Even a caring family can hurt a child when they fail to truly understand what the child is going through.

The contributors share their personal experiences here not for the sake of reprimanding anyone, but to show what a child who is disabled must face and how family members can help—as well as how they often hurt.

Angela C. Orlando

When the doctor told my mother I had Usher’s syndrome, she broke down and sobbed right in front of me. I was thirteen and scared out of my mind. Her tears told me that all was lost. I felt like my life was over. I will never forget that moment.

Once at home, my parents began to calm down and find the strength needed to support me during this difficult time of adjustment. We were lucky to live in a small university town. My parents contacted the Kent State Speech and Hearing Center to enroll me in aural therapy. They wanted more than anything to help me hear again.

I don’t think my parents were in denial, but they were hearing culture people, so it was natural for them to push strategies to restore my hearing. I didn’t mind that; I was hearing culture, too. I wanted to hear. The problem was that hearing aids didn’t work for me, and nobody would listen to me or believe me when I tried to explain that. “She’s just being a teenager,” they said. Those words haunt me. The specialists at Kent State told my parents they had to push me to use the hearing aids and practice listening skills. They said the hearing aids would work if I would try to use them. They convinced my parents that I was just being vain and didn’t want to look different from the other kids. What could my parents do? This was all so new to them. Here was this great specialist improperly advising them on how to handle the situation. They believed they were getting the right advice and followed it.

I was miserable. I couldn’t hear. What started out as a mild hearing loss had become a profound loss within three years. But I wasn’t allowed to learn sign language. The specialists said that would make me lazy, and I wouldn’t try to listen.

I attended hearing therapy each week. The therapists stood behind me and spoke, so I couldn’t read their lips. I couldn’t even hear their voices, much less, repeat what they said. And all the time they scolded me for being lazy, for not trying to hear, for being too vain to wear my hearing aids. I was “just being a teenager.” My parents followed their instructions. They forced me to wear hearing aids—or tried to. They pushed constantly. They used a little blackmail: “If you want to go to the mall, you have to wear your hearing aids.” We fought a lot. I stayed in my room as much as possible. One time, my mother put one of my hearing aids in her ear and said she was amazed that she could hear people talking down the street. No one understood that when I wore them, all I heard was horrible crackles of sound and static. I got nothing meaningful at all out of them.

Looking back, I would say that my parents reacted in a normal and healthy fashion. They grieved and then accepted the news. They sought out professional help and followed the guidance they were given, even though it was the wrong advice. I just wish they had listened to me about what was going on. As an adult, I had the chance to prove myself, and everyone realized how wrong they’d been about me.

Christian S. Shinaberger

When my dad realized when I was eighteen months that I had a visual problem, my mom didn’t want to believe it at first. But after doctors found cataracts and removed them, and I developed glaucoma as a result of the surgery, she knew I would eventually become blind. She decided to show me everything she could, while I still had some vision. She took me to parks and let me see and touch things. She continued to do the same thing when we moved back to the United States after spending a few years in Germany.

My parents got these really thick glasses for me. I think I had two pairs. One was for near vision and one for distance. They bought me a little red tricycle, a blue walking beam pedal car and a blue wagon. I used to pull the wagon with my tricycle, and my sister rode in it. But my sight soon deteriorated to the point where the glasses didn’t help anymore. I was totally blind by age six.

But I didn’t get a hearing aid until I was in second grade. My parents had been preoccupied with my vision problems and hadn’t noticed that I also had some hearing loss.

I think my family did the best they could in dealing with me and my disabilities. My dad didn’t tend to be personally involved in my childhood. He was a good provider, and he helped through the surgeries. His being a doctor was very handy in that respect. But my mom was more actively involved in my life. She was the one who researched things, such as finding a resource teacher to start me on learning Braille when I was in preschool. She was resourceful, too. For instance, when she wanted to teach me how to swim in a plastic backyard pool and the neighborhood dogs kept tearing it up, she got a metal trough to use as a lap pool for me.

My dad’s influence in my life and our friendship didn’t really develop until I was in high school. He was too busy “being a doctor” and chasing fantasies to spend much time with me when I was little.

Another important influence, albeit nonhuman, was my first pet desert tortoise, which I found shortly after we moved to California. As reptiles go, she was very affectionate. She liked coming into the house, would eat from my hand, and she wasn’t afraid of people. I used to tell Ginger the tortoise all my secrets. I knew she wouldn’t tell anyone else.

Christy L. Reid

After my parents learned I had optic atrophy, they did everything they thought would help me as a legally blind child. In those days during my childhood, our family frequently moved to a new city and new home. My dad, who worked as a sales manager for a large, national company, was transferred to a new location almost every year. That meant I had to frequently start a new school, too. But my mom and dad carefully chose new homes that would allow me to attend the school with the low vision services I needed.

My mom took me to visit a low vision specialist when I was in first or second grade; I can’t remember now. But I remember we lived in Cincinnati, Ohio, at the time. That’s when I was introduced to a magnifier, a Bubble, that became my best friend for the next seven or so years. I was very particular about the kind of magnifier I felt most comfortable with. The Bubble was like a small solid glass ball sliced perfectly in half. The flat side lay on the book or flat surface I wanted to look at and I pressed my stronger eye against the rounded part. I could read about two words at a time. Whenever I dropped the Bubble, it would crack in places. My mom probably ordered four to six replacements while I could use the Bubble.

By the time I was in college, my vision had deteriorated to a point where I couldn’t use the Bubble. My parents bought me a closed-circuit TV (CCTV) to use during college.

Even though my parents did about everything they thought would help me as a legally blind child, there is one thing I wish they had done when I was in kindergarten and they learned I had optic atrophy: I wish I had immediately started working with a Braille teacher. If I had started learning Braille as a young child, it would have made a huge difference in my life. I don’t blame them for not arranging Braille services; they were told by teachers and doctors that I had enough vision and didn’t need to learn Braille. But as I got older and reading print got harder, learning Braille became an issue. I was ten years old, in the fifth grade, and very stubborn. We lived in Poplar Bluff, Missouri, then, and I was working with a very skilled vision specialist teacher. She wanted to teach me Braille, but I refused, saying I could see good enough and could use my Bubble. Of course, that was my fault; I had the opportunity to learn Braille. But I was too old to be forced into doing something I didn’t want to do.

Looking back, my childhood was generally happy and normal. My parents always encouraged me to try to do things that interested me and were reasonably safe. I had friends to play with in the different places where we lived. I would spend the night with a friend and at other times, invite friends to sleep over at my house. My mom and dad treated me the same as they treated my younger sister and brother, scolding me when I was bad, playing with me, teaching me to be responsible by cleaning my room.

The only concern related to my low vision was several biking mishaps. I got my first bike for my sixth birthday, and for the next few years, I enjoyed biking like most kids. But by the time I was ten, my vision had worsened, and I experienced the first of several biking accidents. My mom was out shopping that day, and Dad was in the house with my sister and brother. I was on my bike crossing the street at the corner near our house. As I reached the middle, a motorcycle hit me smack in the center. I crashed onto the street, hitting my head. I think I felt stupid and didn’t want all that attention that happened next. I jumped up, grabbed my bike, and tried to get away. But the motorcycle rider held me back and made me sit in the grass, while a neighbor went to get my dad. I kept insisting I was fine. When my dad got there, he didn’t look too happy. I don’t remember what was said, maybe I didn’t hear it, but the motorcycle guy drove away and Dad made me come into the house and sit quiet for a while, which I didn’t like much.

That was the first of several more accidents. The last one occurred when I was sixteen and a pick-up truck crushed my bike into a piece of junk. Luckily, it happened very slowly, so I was able to roll out of the way, unscratched. But my dad, with good reasons, absolutely refused to buy me another bike. That was the end of my biking days until many years later, when my husband and I bought a tandem.

Ilana Hermes

My mom told me that she almost had a nervous breakdown when I was born with hydrocephalus and that my dad told her to be strong for me, because I could not survive without her love. She was a very dedicated parent. When I was small, she carried me around the house while she did things. I was blind, so she introduced me to things by sense of touch, like she would open the cold water tap and hold my hand under the water for me to feel.

My father, mother, and sister were (and still are) beside me all the time. My father worked shifts when I was little, but I spent quality time with both my mother and father. My sister and I had normal sibling squabbles, but now that we are adults, we’re closer. But since my mother was at home more, she was the one who had to deal with my tantrums and outbursts. She also had to rush me to the hospital when my shunt broke, while my dad was working.

My mother and I also had some clashes. Because I had lost sensation in my feet, I didn’t like to wear shoes or socks. I couldn’t explain it to her when I was little, so she would get mad at me. Once, she shredded my socks and threw them away, because I kept pulling them off. She understands now, but back then, it just seemed to her like I was being defiant.

I was a hyperactive child, and my teachers told my parents that I should be put on Ritalin. When my neurosurgeon found out about this, he commanded that they take me off Ritalin, because it masks some early signs and symptoms of shunt malfunction. As a young child, I couldn’t express how I felt when the shunt didn’t work right, so the masking effect was dangerous. So my parents had to be very watchful over me and regularly consult the doctors. I’m sure it was stressful for them.

My uncles, aunts, and cousins treated me as they treated my sister, and that was with love and caring. I must say that I kept myself aside when people came to visit because of my lack of social and groupinteraction skills. Now that I’m older and have two cochlear implants, I socialize more with family, but I’d rather listen than talk. My hearing still isn’t perfect, so I’m paranoid that I will misunderstand someone and say the wrong thing in response.

Judy Kahl

As I look back at my childhood, I can truly say that I thought I was normal. I attribute this to my parents, as they made everything “right” for me and did everything and anything possible to make sure “their Judy” was taken care of. I was an only child, and we lived very comfortably. My father was an engineering draftsman by day, taught music in our home two evenings a week, had his own Dixieland band, and frequently played in local country clubs on the weekend. This left my mother and me alone together a lot. She always encouraged me to invite my friends over for company and provided me with a “fun and loving” home. Since we had a small two-bedroom home, my mother was always close by and kept her ears open to whatever I was doing. I think my parents were overprotective at times, but this was one way of watching over me, by allowing me to have any and all friends to my house. I grew up in Sharpsville, Pennsylvania, a small town where everyone knew everyone, so it was easy to screen out any rowdies.

I remember my eighth birthday party was a spaghetti-and-meatballs dinner in our dining room. We all wore dresses and party hats, and we all tried our best to behave like ladies! My mother always had our home decorated for all holidays and that made it fun, too. Oh, yes, a party for every occasion in our home.

Whenever there was a new activity, like dance lessons, my mother would take me early to meet with the teacher and explain about my hearing loss and hearing aid. Believe me, Judy was kindly taken care of or Judy never went back to that teacher. I realize now that my mother had been doing these special things for me, but back then, I thought it was a perfectly normal thing for her to introduce me to the teacher. She handled things in a warm way, and consequently, I felt I could do anything and everything I wanted to do. I took gymnastics and dance lessons and piano lessons from my father, and my school lessons were important, too.

I was never “in the background” but was always a “doer” and involved in a lot of things, although I was not allowed to do everything. My father said “No” to dances at Thornton Hall, because that was too rowdy and I was too young—always an excuse if he didn’t feel it would be good for his “little girl.”

My mother had four sisters locally, and I had fourteen cousins, so every holiday and many weekends were filled with get-togethers and fun with my cousins.

I never heard my parents argue about how to handle me or emotionally upset about my handicap. Well, not in front of me, but I remember my mother saying later in life that it broke her heart to send off her little girl to school with a hearing aid and then to discover the hearing aid had gotten disconnected when I returned from school. I know there had to be some upsetting moments for them, but they were my cheerleaders in life and were supportive in everything I wanted to do. Fortunately, I did not give them problems, so it was an “easy street” life for all of us.

I firmly believe that my childhood has given me my positive attitude and fun outlook on life.

Mark Gasaway

My family tried to help me, but at the same time, let me continue to be who I was. They did not try to tell me that I was not able to do certain things just because I was deaf with limited vision. They continued to be my family and tried to help. However, in those early years, both parents were a bit overprotective.

My siblings had some attitude changes toward me. But overall, they were good about accepting the fact I was “different” than the brother they knew before the illness.

The things my family did to help me are numerous. They took me to see specialists who were recommended by doctors to see if they could help. I saw a lot of specialists who were able to fit me with glasses that helped my vision to some extent. My hearing was another story. My family took me to see a program manager for a speech and hearing center where I took classes in speaking and lip-reading. The lip-reading was not much help with my limited vision, so I decided it was not worth it to continue.

They also took me to see rehabilitation counselors, and we were lucky enough to find one that helped me a lot. I was also introduced to a hearing specialist who had me tested for hearing aids, which vocational rehabilitation (VR) service paid for.

I feel the things my family did to try to help me were the right things to do, and these things did help. If my family had not tried to do anything to help me, I would not be the person I am today. They deserve to be recognized for the effort they put into trying to help me. Upon learning that I had become deaf with limited vision, my parents and siblings accepted the limitations and then let me attempt to go beyond them. I am forever grateful to them for letting me be me and not trying to tell me I could not do something I truly wanted to do.

Melanie Bond

I believe my parents did a good job of raising me and my siblings to become independent thinkers. No one coddled me because of my disabilities, and for that, I’m deeply grateful that I have no compunction in taking a stand on matters that are important to me, even if I must stand alone. There is strength in being independent. Over time, my parents and my siblings be...