Braille Monitor                                             July 2015

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A Unique Disability

by Ruth Silver

From the Editor: Ruth Silver surmounted the challenges of vision loss and later hearing loss to become a successful teacher and service provider for children and adults with special needs. She is the founder of the Center for Deaf-Blind Persons in Milwaukee. She served as executive director for seventeen years. For the next eleven years she continued to work part-time as consultant, outreach presenter, teacher, coordinator of new projects, and support group facilitator. Currently Ruth is a consultant and community outreach presenter for the center, while independently participating in book events for her recently published autobiography, Invisible: My Journey Through Vision and Hearing Loss. She has a bachelor's degree in the education of the deaf, graduate credits in the education of the blind and in counseling, and certification in support group facilitating. Ruth lives in Milwaukee with her husband.

Deaf-blindness is not simply deafness plus blindness. It is not two disabilities put together; it is one unique disability. Let me explain.

I am totally blind, having gradually lost my vision starting in childhood. In young adulthood I started losing my hearing. With hearing aids I am able to understand some speech in a quiet environment.

When I was only blind, I could socialize with many people at a gathering. Now at best I can converse with the individual next to me.

When I was only blind, I could interact with people in a room where the radio was playing, dishes were clattering, and laughter abounded. Now, with background noise, I can understand nothing and be alone in a crowd.

When I was only blind, I could sense sadness, joy, anger, and agitation from a person's tone of voice. That is no longer possible, and the loss sometimes causes misunderstandings.

When I was only blind, I could hear the softest footsteps. Today I am repeatedly startled by the voice of a person who has entered the room with no forewarning.

When I was only blind, I could identify a person by his/her voice. Now I cannot tell who is talking to me unless I first hear a name.

When I was only blind, I could move quickly with my white cane and in familiar surroundings without it. Now I walk cautiously to avoid bumping people since I cannot hear if others are around or where they might be.

When I was only blind, I could retrieve a dropped item in seconds by hearing where it fell. No longer able to localize sound, I must now search on my hands and knees and even then may not locate the item because it rolled behind a door or into another room.

When I was only blind, I could stand unsupported in the middle of a room, bend over, turn sharply, or jump out of bed quickly. This is no longer the case. Like many others with hearing loss, I have balance problems which prohibit abrupt movements.

When I was only blind, I had no difficulty hearing the ring of the telephone or doorbell. Today, even with amplified ringers, my responses are inconsistent, and I must consider using a vibrating alert system.

When I was only blind, talking on the telephone was fun. Now, even with hearing aids combined with a volume-control phone, I miss some words and misunderstand things. Sometimes I use a Braille-type telephone, which is slower and does not convey the emotional nuances of the voice.

When I was only blind, I spent hours listening to Talking Books. Most voices now sound muffled.

When I was only blind, my husband and I enjoyed movies, and he provided an occasional description, but movies are now confusing and no longer pleasurable.

When I was only blind, life had minimal stress. Now, piecing together bits of information, localizing difficulties, and coping with balance problems, misunderstandings, the attitudes of others, and unpredictable drops in hearing increase daily stress and fatigue.

The list of challenges is equally long for individuals who are deaf and have lost or are losing vision. Deaf people rely on their vision to compensate for their hearing loss. Blind people use their hearing to compensate for their vision loss. Deaf-blind people are able to compensate for the loss of both sight and hearing only by learning deaf-blind-specific adaptations that focus on developing and integrating touch, taste, smell, kinesthesia, and any remaining vision or hearing.

When I acknowledged the need and learned new ways of doing old things, my splintered pieces combined into a complete, though narrowed, whole. I rejoice once again in being able—differently able.

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