J. Clark (Usher Syndrome, Type I)
J. L. Clark is "second generation" DeafBlind and thus native to the culture. He grew up in Eden Prairie, Minnesota, and attended day school until fifth grade, after which Minnesota State Academy for the Deaf (MSAD) became his second home. His sighted Deaf mother and DeafBlind father were very involved in his education, always making sure his rights were ensured.
At MSAD, Clark was an active in campus life, eventually becoming class president and president of MSAD's Junior National Association of the Deaf chapter, together with serving as student representative on the school Site Council and several personnel interviewing committees. For all of his four high school years, he was part of Academic Bowl teams that won four straight Great Plains Schools for the Deaf (GPSD) championships. In public address competitions, he was GPSD champion in 1993, 1995, and 1996, as well as winning the international grand prize/scholarship from Optimist Club in 1995. In 1996, Clark was awarded the Robert F. Panara Award for Poetry, which was a rare encouragement for his creative writing.
After graduating from MSAD in 1997, Clark enrolled at Gallaudet University. There, he was appointed Chief Justice of the Student Body Government and was chosen to represent Gallaudet University as delegate at the 1998 National Association of the Deaf Conference. After three terms, he decided to return to Minnesota with his newlywed wife and to found The Tactile Mind Press to publish signing community literature in both English in print and American Sign Language (ASL) on digital video.
Back in Minnesota, Clark got a job with DeafBlind Services Minnesota (DBSM) and worked there for a year while setting the foundations for his company. At year's end, he left DBSM, published the first The Tactile Mind Quarterly issue, and entered University of Minnesota as a transfer. All along this time, Clark was writing, publishing essays and poetry in many publications, among them Ache, CSD Spectrum, Deaf-Blind American, Deaf-Blind Perspectives, McSweeney's, Poetry, The Real Word, SIGNews, Ship of Fools, Silent News, and Wind. He was honored as a Featured Artist at the Deaf Way II International Cultural Arts Festival and received an Artist Recognition Grant from VSA arts of Minnesota/Jerome Foundation.
Clark is most known for sparking the signing community movement through his company and his small manifesto, "The Signing Community: A Perspective," now a classic and often reprinted. He presents frequently on signing community issues, ASL and English literacy, and DeafBlind culture. Today, he is still working on elevating discourse in the international signing community, continually expanding his company's book and DVD lists. He is also at work on several groundbreaking research projects about DeafBlind culture and history, which will result in books. Meanwhile, Clark lives in St. Paul with his wife and their three sons.
W. Williams (Usher Syndrome, Type II)
As I reflect back on my life, I remember trials and triumph. I grew up in a small English/French speaking mining community in rural Quebec, Canada. I was the only known English-speaking hearing-impaired child in my town and surrounding communities. As a toddler, I was slow to learn to talk and my older, close in age brother understood my speech and interpreted for me. My grandmother suspected that I had a hearing loss. At the age of four, my mother witnessed me coming home from a playmate’s house and running across a quiet residential street. A car came right toward me. The driver jammed on his brakes and honked his horn, narrowly missing me. I was oblivious to all of it. The incident scared my mother into believing that my grandmother was right. Doctors told my parents that I was not paying attention.
Just prior to starting school, I spent a week flat on my back with both eyes bandaged from “lazy eyes” surgery, and communication was a challenge. When I was in Grade 1, the educational staff told my parents I would not succeed past the fourth grade in public school. At the age of seven years, I was recovering from the tonsils operation, which failed to improve my hearing. In a nearly darkened hospital room I reached for a glass on the bed table and knocked it over, and the nurse scolded me. I was puzzled as to how I upset the juice. I walked to the school Halloween party with my mother, sibling and friends, and I stumbled on the curbs and steps in the dark. In Grades 2 and 3, I was placed in the lowest reading/writing group, much to my embarrassment. With the support of my teachers, my parents were able to have my hearing tested when I was eight years old. The evaluation revealed that I had a moderately severe sensorineural hearing impairment. At that time, hearing aids were not
recommended for people with nerve deafness. So, I did without them and well remember the days of tired eyes and a sore neck from speech-reading teachers all day at school. A few months later I nearly died from the measles with a fever of 106 degrees. After this illness my grandmother suspected I had a vision loss.
At the age of 10 or 11, I was outside talking to friends as the daylight was starting to give way to twilight. Suddenly, a bicycle swooshed by, grazing me as it went past. I wondered why I did not see it coming toward me. When we played Hide-Go-Seek at dusk, I could no longer find my friends. I thought I was becoming more deaf. It scared me. Also, I was very clumsy night and day. I knocked over things. I tripped over things. I bumped into people. My behaviors frightened and frustrated my parents, particularly my mother, who took it out on me. In the fourth grade (and later years), I withdrew socially, preferring to cling to my seat and not interact with people.
My mother and father took me to the eye doctor again and again. He only said the words “night blindness” and “tunnel vision”, and nothing more. My parents' repeated requests for speech therapy and enrollment into the deaf school were denied. When I was 17 years old, I attended a one-month summer camp for deaf and physically handicapped children and youth, where I had speech therapy. My self-esteem soared but it was short-lived. A year later I was fitted with hearing aids for the first time. This was done on the advice of a camper who received his hearing aids from a hearing aid dispenser. It took a couple of years for my nervous system to adapt to the many, painfully loud sounds of the hearing world; as a result, I was prone to verbal outbursts. Eventually, I realized that I could understand people speaking if it was in a relatively quiet environment. At the age of nineteen, an eye specialist informed my parents of my imminent blindness and advised them not to tell me.
By the time I graduated from school, I had repeated four of the six high school grades. Because my grades were too low, my childhood dreams of going to university and becoming a psychologist were dashed. I was at a loss at what to do next. My mother was determined I was not going to sit at home collecting the blind pension. She read the employment ad in the local newspaper, and much against my will, drove me off to my first full-time job in a village. I worked as an attendant at a home for mentally handicapped people. My fear of being on my own changed to enjoyment of being independent. I became fond of the residents and developed life-long friendships with some of the staff. I decided to undergo psychotherapy to help me better deal with my unhappy youth, hearing loss and “psychological blindness”. After all, I could read regular print, so why was I so clumsy?
I regained the confidence to pursue further post-secondary education. At the age of 29, I was assigned to do a Champlain Community College Special Care Counseling internship at the Montreal School for the Blind. Staff immediately noticed my mobility difficulties. I learned that I had retinitis pigmentosa, and along with the sensorineural hearing impairment, Usher Syndrome. I was legally blind with ten degrees of peripheral vision. I received orientation and mobility instruction on safe travel with a cane. I was amazed how carrying a cane for identification purposes eased travel by causing the busy downtown shoppers to part like the Red Sea.
Undergraduate university followed and I had to fight to obtain and use an FM listening system to hear the professors in the auditorium-size classrooms. Similar struggles ensued over my need for note takers, front seat reservations, and longer examination times. My requests were finally met in my senior year when a responsible liaison was hired to assist disabled students.
While in the graduate program at Gallaudet University, I was immersed in Deaf culture. I realized how restricted my visual fields were when I had to learn sign language tactually. For the first time, I met hearing-vision-impaired people like myself. Through attending dual sensory functions, I learned DeafBlindness did not mean total deafness plus total blindness, but included all individuals with any degree of combined vision and hearing loss.
A Bachelor of Arts degree in Psychology from McGill University and a Master of Arts plus 30 degree in School Psychology from Gallaudet University were followed by a stressful job search. I sent more than 70 resumes across Canada and the United States. I was up front with potential employers about my dual sensory impairment. I received 2 job interviews and was hired as a Counseling Psychologist at the South Carolina School for the Deaf and Blind. Within two years, budget layoffs forced me into another similar job search. I was hired and am currently employed as a School Psychologist by the Faribault Public Schools and assigned at the Minnesota State Academy for the Blind
While in South Carolina, I found myself having close calls with vehicles coming from the left and right that I could not see or hear. I decided to get a dog guide at Seeing Eye in New Jersey. Darby, a loyal Golden Retriever, had brought me safety and joy. Telly, a sweet Yellow Labrador Retriever, provides independence and sunshine.
While attending the Minnesota DeafBlind Association activities, I discovered even those with some vision and some hearing could benefit from the services of a Support service Provider to be their eyes and ears so the DeafBlind could fully participate in their events. After cancer, I experienced a significant decline in my remaining vision and hearing. A cochlear implant enabled me to hear when speakers talked slower and clearly. I learned to use Braille and computer speech for reading and writing. A Support Service Provider assisted me with mail, errands and community involvement.
In retrospect, it has been a long journey, but with perseverance and angels along the way, I accomplished a dream. Decades later Usher Syndrome Type II, unfortunately, continues to be undiagnosed until the individuals are in their 20s just as I was. Early diagnosis of those with a hearing loss and clumsiness night time and/or daylight will provide these individuals and their families with the understanding and support they need to lead satisfying lives.