New HKNC Awareness Campaign: In the Dark About People Who are Deaf-Blind?

Share Helen Keller's Vision by participating with agencies and organizations worldwide in the Helen Keller National Center's 1997 Awareness Campaign which focuses on "independence" and the participation of people who are deaf-blind in their communities -- at school, in the workplace, and at home.

Most people who are considered deaf-blind are not totally blind and totally deaf. There is tremendous variety in the degrees of vision and hearing loss, and a great range of individual abilities and needs among this population -- estimated at more than 70,000 Americans. This figure excludes the escalating number of older adults who are losing vision and hearing, due to the aging process, who strongly desire to retain their independence. Today, many "fragile" premature babies are surviving due to advanced technology, but often have vision and/or hearing impairments. Recent statistics indicate that there are nearly 11,000 young people, ranging from infants to age 21, who are deaf-blind, and that number is growing.

According to Dr. Robert J. Smithdas, assistant director at the Helen Keller National Center, who has been deaf-blind since the age of 4 1/2, "Independent living means an ability to function smoothly and easily within the structure of society, being able to communicate with others to obtain useful information, travel freely and without fear, and have the ability to perform chores that are necessary for survival."

During the last 25 years, much progress has been made in providing education and specialized vocational rehabilitation training. Today, people with dual sensory disabilities have options, make choices and express preferences. Individuals may live in their own homes, in a shared apartment, or in a group home with support staff. Aids and devices such as low vision clocks, tactual wake-up devices, tactile signal alerting systems, large print and braille telephone devices make independent living feasible. However, sufficient and appropriate residential sites remain a critical need.

People work in jobs ranging from food service at a local hospital or restaurant to data entry at AVIS, stock clerk in "the GAP," and teaching at a technical college. Some folks use public transportation -- buses, trains, or taxis -- and can travel comfortably to work, visit families, or shop in town. Others may need someone to accompany them. Communication, the key to learning, knowledge, and access to people, varies -- from the use of voice, tactile sign language, and writing in large letters on the palm of a person who is deaf-blind to the use of portable braille devices like the Bralle Lite. Individuals with limited language skills may use a communication book which could have pictures, tactile graphics, and printed words to indicate what the deaf-blind person wants.

Pictured in the 1997 awareness poster and public service ads are Sandra and Scott Stoffel. Deaf as a young child, Sandra started to lose her vision at age 21. She discovered that she had Usher syndrome, a genetic condition combining hearing loss and Retinitis Pigmentosa (RP), a major cause of deaf-blindness. Afraid to attend college and pursue her interest in nursing, she stopped planning for her future. After enrolling in a rehabilitation training program, she soon acquired the skills she needed to regain her independence. She met a fellow student, Scott, who was diagnosed with "Stoffel syndrome," a neuro-muscular disorder. He was legally blind and had experienced a severe hearing loss at age 18. Friendship blossomed into love and they married in July 1996. Today they live in an apartment on a large university campus where Scott is majoring in computer science and creative writing. Sandy is working towards a certificate program in medical transcription at a nearby college. Both are following their preferred interests, using their talents and facing the joys and problems of everyday life.

Originally proclaimed by Congressional resolutions and Presidential signature 11 years ago, awareness activities and events featuring information about significant vision and hearing loss, or deaf-blindness, now occur throughout the year, beginning in June, the month of Helen Keller's birth.

All citizens, health organizations, civic groups, libraries, schools, and agencies are encouraged to plan state and local activities during the month of June, and especially during the week of June 22-28. A sample proclamation, a radio public service script, list of suggested activities, 1997 poster, ad slicks, and this press release are available at no cost from the Public Relations Department, Helen Keller National Center, 111 Middle Neck Road, Sands Point, NY 11050, or by calling Barbara Hausman, [phone], ext. 325 (voice), 516-944-8637 (TTY), or 516-944-7302 (fax).

The Helen Keller National Center is the ONLY national program which provides diagnostic evaluation, short-term comprehensive vocational rehabilitation, and assistance with jobs and residential placement for all Americans who are deaf-blind. Local services and training are offered nationwide to these individuals, their parents, and professionals in the field through the center's 10 regional offices, some 40 affiliated agencies, a National Training Team, Older Adult Program, National Technical Assistance Consortium for Children & Young Adults Who Are Deaf-Blind (NTAC) and D-B Link. The center partially funds a National Family Association for Deaf-Blind.