Conquering Obstacles: There Are Reasons to Go On by Ruth Silver
Published in The Deaf-Blind American, a publication of the American Association of the Deaf-Blind; volume 24, number 2, December 1985
Today I will share with you some of my experiences, and you will learn how I overcame obstacles - and sometimes created them. By the time I was twelve years old, I knew exactly what I would do with my life - I would be a symphony cellist.
At sixteen I learned that I had retinitis pigmentosa and I was going blind. The doctor informed me that I was already legally blind. The condition had started early, gone undetected for years, and caused much unhappiness. It had driven me away from people into a world of music and books. After the diagnosis, it took me three years to give up my dream of music. It is difficult to accept what we cannot change even though we know we can never change it.
At college I transferred from a music major to unclassified, to exceptional education. By my junior year I was in trouble. I needed the help of readers. Compounding the problem was the fact that I was concealing my handicap for the sake of a sensitive family member. The strain was severe, but I did get my degree, only to learn that no one wanted to hire a partially-sighted teacher of the deaf. I felt discouraged, but persisted applying everywhere.
Finally, I received a letter from the Iowa School for the Deaf offering me a teaching position in their deaf-blind department. Deaf-blind? I had heard of Helen Keller, but were there really others? I accepted the job and loved it. Two years later I went to Massachusetts where I taught deaf-blind children and youth at the Perkins School for the Blind. I also did graduate study in the education of the blind. I loved Massachusetts too, but did return home to Milwaukee, Wisconsin, to marry my honey. I was 26 years old. He was tall, dark, handsome, and 28.
During the first two years of marriage, I taught multi-handicapped children part-time and finally learned to cook. Then, at the request of the American Foundation for the Blind, I became a foster parent and teacher of a four year old deaf-blind student, and spent the next 15 months preparing her for a residential school.
Afterwards, my husband and I decided to start raising our own family. When our daughter was three, I taught continuing education classes for deaf adults at the University of Wisconsin-Milwaukee. It seemed at times that I was having difficulty hearing in the large university classrooms. How could that be? I had always had superior hearing. I grew anxious but convinced myself that the problem was not my hearing but probably the loss of my remaining vision.
A year and a half later a doctor confirmed my worst fears. I had a hearing impairment. The world came crashing down. I moved mechanically through the days and rarely slept at night. The love and understanding of my devoted husband pulled me through the year. How fortunate we are to have even one person in our life, a relative or friend, to share our joys and sorrows. At the end of the year, I was offered a job, hesitated, and took it. For the next twelve years I worked at the Center for Blind Children in Milwaukee, first as program director and then as executive director. It was a most fulfilling twelve years.
Intermingled with the stimulation of creating a new program, and with the joy of helping handicapped children and their families, was the ever-present anxiety and fear of declining hearing. Over the years I had adjusted relatively well to my progressive vision loss, but not to the hearing impairment. A world without music? A world without speech? A world in which people might pity me and even be afraid to interact with me? I could not deal with it. But there was no choice.
Gradually birds stopped singing and voices grew muffled. I needed hearing aids, but told myself that parents of blind infants I was working with might become anxious about their children having an additional disability if they saw me wearing hearing aids. I believe this was true, but it was also a way for me to put deafness on the back burner. For surely if I could manage without hearing aids, things really were not so bad after all. Right? Wrong!
In 1981, after three years of constant back pain from straining forward to hear, I had to get hearing aids. I did. The world exploded! Reality slapped me in the face. I was truly hard of hearing. And worse, hearing aids were irritating and did not make "normal hearing." My world was shattered. I could not put the pieces together. I decided to leave my job. I would acquire skills I would need in the future, try to find other deaf-blind people to help and write -- something I had done successfully in the past. Some days I did these things, but some mornings I was unable to get out of bed. There had been obstacles in the past and I had overcome them, but this was different. It was a generalized feeling of hopelessness, emptiness, and uselessness.
My daughter was eighteen years old and occupied with her own life. The staff I had worked with closely for 12 years was now busy doing its job. I avoided my friends because I did not want to tell them of my hearing impairment and face their reactions. My faith, which had once been strong and helpful, grew ever weaker. My family tried to be supportive. My husband expressed his love and concern every day. A psychiatric social worker, he knew I needed people and a purpose. He encouraged me to become involved in the field of deaf-blindness so that I would once again help others and in turn, help myself. He explored every option with me. I had such a beautiful marriage, how could I possibly be depressed. But I was. I, who had rarely shed a tear in the past, found myself weeping and weeping. The future looked bleak. There seemed no real reason to go on.
That was it. I needed specific reasons to get up in the morning and get moving. I devised a plan. Every night before going to bed I would make a list of the things I had to do the next day. On the list were specific tasks such as : clean the silverware drawer, practice the Optacon for 30 minutes, write the rough draft of a new poem, call two agencies to learn if they ever served deaf-blind clients.... The plan was a simple one, but it worked most of the time. By doing things on the list day after day, I affirmed my ability to do and to use energy constructively.
Gradually I regained my confidence. With doing, I learned, comes healing. Things were better but not good. What more could be done, I asked myself, and got another idea. I would attend a meeting of a group I had heard about. Perhaps this would help.
So, in August of 1982, I travelled to my first convention of the American Association of the Deaf-Blind in Denver, Colorado. I was scared. The first evening, deaf-blind people reached out to communicate, but I had been trained as an oral teacher of the deaf and did not understand their signs or fingerspelling. Furthermore, the room was noisy, and I had difficulty hearing speech. I went to my room, got into bed, and hoped I would never wake up again.
The next day I dragged myself to a meeting, and another, and another. Deaf-blind people spoke on the challenge of independence, working with interpreters and preparing for the future. And every day I drew strength from them, for they had struggled as I was struggling now, and they had made it.
By the end of the week I felt hope again. I had a real reason to go on -- a long term plan. This time I would really acquire the skills I needed, and someday I would reach out and touch others as I had been touched in the beautiful land of Denver, Colorado.
Back in Milwaukee, I realized how much I had hurt myself physically and emotionally by denying my hearing impairment for so many years. It is only by admitting to ourselves that we are losing our vision, or are losing our hearing, that we ultimately free our minds to go about the business of acquiring the skills we will need to stay in touch with our world. It is only by learning fingerspelling or sign language or braille or print-on-palm -- that we finally quiet that anxious voice within that cries out, "Will I someday be cut off from people and ideas?"
Admit. Prepare yourself. And find peace. Finally, after 14 years, I was ready to prepare.
I was ready, but our community was not. I was able to obtain some of the help I needed, but not enough. I was disappointed, hurt, and frustrated; but I took note of gaps in service -- gaps I would examine closely in future planning. In the meantime, I studied what I could, and began in earnest to identify the deaf-blind population. Among my efforts was a request to the Division of Vocational Rehabilitation to survey its offices in the Greater Milwaukee area. The results from this one survey alone indicated there were enough deaf-blind and hearing-vision impaired adults in our community to warrant planning. I proceeded. Much of what I did at his time, I did by myself.
Some days were lonely and discouraging. Sometimes I wondered if all my studying and paper shuffling would ever result in anything. I clung desperately to my list at this time to insure that I would get up in the morning and get moving, even if it meant to face yet another lonely day. One item repeated on my list every day was, "Practice your sign language and finger-spelling." Never again would I attend an AADB convention and be unable to communicate directly with other deaf-blind people.
In the summer of 1983, at the convention in Rochester, New York, I did communicate. It was a little slow, and sometimes I felt as though I were signing with a foreign accent, but I made it through. And it was a good feeling. Also, at his convention, some of you may remember meeting with me and giving me ideas and much needed encouragement to start a social group in the Greater Milwaukee area.
In September, 1983, the first meeting was scheduled. Wow! Real live deaf-blind people, not just papers. It was a wish come true, not only for me but for the others, too. For, some months later, when we voted -- and we always vote -- the group selected the name, WISH. The letters represent "With Impaired Sight-Hearing," and a WISH to be together.
About this time also, remembering the service gaps I had noted the year before, I began working with a group of people, a board of directors, to establish an agency that would serve deaf-blind adults and serve them well. All of us on the board are working hard, especially our secretary, my guide-interpreter this week, Juliette Welch. You and I are fortunate indeed to have Juliette Welch and all the other dedicated volunteers who give so much to us. Yes, our nine-member board of directors worked many, many months writing by-laws, becoming incorporated, raising funds, raising funds, raising funds.
In January, 1985, the Center for Deaf-Blind Persons, Inc. opened part-time in Milwaukee, Wisconsin. Here deaf-blind adults receive emotional support, on-going socialization opportunities, instruction in communication and other needed skills, and more.
Help is available to family members in such areas as emotional support and learning a needed mode of communication. Our community is being educated to the needs, problems, and capabilities of the deaf-blind, and being encouraged to interact with us, so they will learn how really "neat" we are.
With the deaf-blind community of Seattle, Washington, as my inspiration, I envision a life plan for deaf-blind adults, a population whose unique condition demands on-going help and opportunities. To make such an on-going plan economically feasible, the Center is training volunteers, including peer tutors to work under the supervision of professionals.
Although many good things are happening for the deaf-blind in our community, this does not mean there are no problems. Of course there are. In looking closely at problems on my lists-s-s, I have come to realize there are those caused by conditions beyond our control, and problems we create ourselves by the way we look at things.
Here is an example of a problem I created for myself. For many years, I thought of the word "independent" as meaning "Do it yourself, do it completely by yourself." Thinking this way, I was reluctant to ask for help. Sometimes I isolated myself or prevented myself from moving toward a goal because I could not say the words, "Please help me." Those of us with two disabilities have enough problems to resolve and obstacles to overcome, we must be careful not to create more, some as severe as our disabilities themselves.
In conclusion I wish to say that deaf-blindness is not hopeless. Neither is it easy. At times you and I have the right to weep, the right to feel angry, the right to feel afraid, and the right to mourn -- for truly, our losses are great.
However, I believe too, that there is much left in life for us to do and enjoy. There are reasons to go on. For you, it might be to write letters to lonely friends, make a gift of handwork for a devoted companion, or study braille so you will not be cut off from ideas. you might practice chess to play in a tournament, start a club for lonely people, become an efficient homemaker, get job training so you can earn money, go to college to pursue a career, care for plants that might otherwise die, or pray each day for peace on earth.
There are many reasons to go on. Find yours. And remember, you and I share a special reason to go on -- so we can be together again with our extended family, AADB, at the convention next year.
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