Journey of a Deaf-Blind Woman

I sat alone on the beach under the shade of a big umbrella. My husband, Bill, and our three children were in the condo taking a break from the Florida sunshine. Dreamily, I gazed at the vast Gulf of Mexico, the brilliant blue sky stretching endlessly above. I was sitting about 50 feet from the surf, but I couldn't actually see the waves hitting the beach; I was almost blind. It was a windy day in late May and I loved feeling the ocean breeze sweeping over me. I imagined I could hear the waves crashing onto the surf, but the sound was only a memory. I was totally deaf. Although I had a cochlear implant and could hear the waves, the cry of sea gulls, and many other sounds with the technology, I wasn't wearing it at the moment and everything I heard was in my mind. As a child, my understanding of speech was better and my vision was clearer. My diagnosis was optic atrophy at age 5 and my vision gradually degenerated over the years. For unknown reasons, nerve damage caused hearing loss and during my teens, my hearing grew worse and worse until by the time I was ready for college, I was profoundly deaf. I chose to attend Gallaudet University because my high school teachers and my parents felt I would receive better services as a deaf and blind student. I feel it was a very good decision; when I entered Gallaudet, it was like entering a new and exhilarating world. Before attending Gallaudet, while I struggled to cope with hearing loss combined with severely low vision, my world grew smaller and smaller, not being able to communicate efficiently with others. At Gallaudet, I suddenly found I could communicate with almost anybody I met on campus using sign language. Thus, my self-confidence and independence grew as I proceeded to get a college education.It wasn't an easy route to follow. I didn't know Braille at the time and depended on using a CCTV (closed captioned television) electronic aid which magnified text, enabling me to read all my college books. I also relied on the assistance of a class aid who interpreted all my teachers' lectures and class discussions because I was unable to see people's signing unless they signed right in front of my face. It was slow going and often frustrating, trying to keep involved socially and keeping up with my coursework but when I was 13 years old, my vision specialist teacher who had worked with me from 5th grade until I graduated from high school, wrote a note for me saying, "Anything worthwhile seldom comes easy." The phrase stuck in my mind and I tried to follow this philosophy. In 1989 after 7 years of persistence, I graduated with a Bachelor's of Arts degree in psychology. With the B.A. in hand and having developed good communication skills with deaf and deaf-blind people using sign language and ASL (American Sign Language), I was ready to face the world. But I wasn't exactly ready; I knew I wanted a professional job working with deaf-blind people and the way to get there was to earn a master's degree. I applied for admission into Gallaudet's graduate school and was accepted into the vocational rehabilitation counselling program. While I thoroughly enjoyed graduate school experience, I got to work with my class mates one-on-one more often and there were a lot more hands-on activities, it became obvious to me that I wasn't prepared for graduate school. I needed to learn Braille and how to use Braille technology; my vision had worsened a lot since starting college. In addition, I needed a break from school and needed to gain experience in the working world. After completing one and a half years and earning 15 credit hours in the master's program, I left Gallaudet and found a job in Baltimore, Maryland.The job was with a new program for adults who were visually and hearing impaired and mentally disabled. My job was assisting the clients with independent living and work related skills. Most of the other staff were deaf, communicating via ASL. By then, I was skilled using tactile signing, putting my hand on the back of the signer's hand to follow movements by touch, and I made friends with co-workers. I felt grown up and independent working full-time, living in my own apartment, using the subway train and bus to travel to and from work. I didn't have any serious problems living on my own. There was a supermarket up the road to which I could walk or ride a bus. But I needed a taxi ride back to the apartment when I had more groceries than I could carry. I would leave a sign I made out of cardboard and wrote my address in big black numbers, on my apartment door to help the driver find my place. I used a white cane and upon moving to Baltimore, an Orientation and Mobility (O and M) teacher who worked with blind people, showing them how to travel in the city, taught me the route to my work place using the subway and bus. Thus, I was independent and knew my way to work as well as to a nearby shopping mall. One day as I stood on the subway station platform holding my white cane, waiting for my train, the opposite train pulled in. As I stood watching passengers hurrying to board, knowing my train would arrive soon on the other side, a woman ran up to me and started pulling my arm. I handed her my notebook and black marker I used for communicating with people in the public, telling her I couldn't hear and would she please write in large print? She frantically scribbled something, but I couldn't read the note. She then gave me back the pen and pad, grabbed my arm again and started pulling me towards the train. I refused to budge, gesturing towards the opposite tracks, clearly indicating I was waiting for the other train. Finally, she let go, dashed into the train before the doors closed. I watched the train pull away, sadly reflecting that some people who wanted to help, just didn't understand how to approach disabled people. As a deaf-blind traveller, it was my duty to help educate the general public how to assist disabled persons in a humane way. After I established my new life for a few months, Bill was offered a position in the same program and moved to Baltimore to join me. He had worked at the Helen Keller National Centre in New York where I met him while doing a summer internship there three years before. I was thrilled when he got the job working beside me and we got to know each other on a daily basis. We had been dating since we met although I was in college and he was working and living in New York and then Cleveland, Ohio. Bill being hearing and sighted, was skilled in sign language and communication techniques with deaf-blind people. He had a wonderful attitude towards disabled people and made me feel like a normal person who was capable of doing things. We shared a lot and were very comfortable with each other. After nearly six months together in Baltimore, we married in May 1992, several weeks before my 28th birthday.After our first year of marriage living in Maryland, Bill and I moved to Little Rock, Arkansas. We wanted to live closer to my family and parents, Ron and Judy Cummings, who lived in Poplar Bluff, Missouri, 176 miles north of Little Rock. I wanted to go back to school and entered the deaf education program at the University of Arkansas at Little Rock with the goal of becoming a teacher for deaf-blind students. I never dreamed I would have a deaf-blind child of my own one day. My vision and hearing loss were caused by nerve damage and no one else in my family nor Bill's had a similar disability.I was pregnant with our first child when I entered UALR. In spite of my growing belly, I enjoyed the teacher training experience. I worked with a deaf-blind 12-year-old student and her teacher at the Arkansas School for the Deaf; observed two energetic four-year-olds in the pre-school program. But when my son, Joe was born in June 1994, my world changed once again. School became less important and motherhood became the ultimate. As a deaf-blind person, I wanted to be the best mom within my abilities.I decided that establishing good communication with my child was an important aspect of being a deaf-blind mom. Bill was in full agreement and we would set Joe on the kitchen table in his infant carrier, reciting together in sign language, "The three Bears". I could see Joe's tiny fists and feet wave excitedly in the air as he watched us signing children's stories. I would encourage Joe to hold my fingers while I signed to him, trying to establish a tactile signing relationship. But he was almost two years old when he finally understood that he needed to sign into my hands. We were sitting at the table and I had a bag of cookies. I refused to give him one until he made the sign for "cookie" in my hand. I quickly rewarded him with a cookie and he got three or four each time he made the sign in my hand. Today at 16, Joe is an expert finger speller and can effectively communicate with me and his younger deaf-blind brother, Ben.When Joe was two and a half, I decided to explore a cochlear implant. It was 1996 and we were living in Poplar Bluff by then. My cousin, who was studying audiology, told me that people using cochlear implants were able to understand sound so well they didn't need good vision. I made an appointment with the St. Louis cochlear implant program and after being evaluated, I decided to go ahead. I am glad I have a cochlear implant. After months of practice I learned to use the new sound and was eventually able to understand many environmental sounds. I never regained the ability of understanding speech, though, but I could hear people's voices very clearly, the sound of laughter, birds singing, and many more. Being able to hear my children's voices is especially wonderful, even when they get noisy and I get a headache. That fall I went to Leader Dogs School for the Blind (LDSB) where I met Milo, a large yellow Labrador retriever. At LDSB I learned how to care for and work with a dog guide. Having Milo as my companion and guide was like stepping into

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