Lack of Hearing Loss Services

Editor: Would you rather have hearing loss or be in a wheelchair? When I first thought about that question, I chose hearing loss as the lesser issue. Now I'm not so sure. We have a friend who has both disabilities, and she says that the hearing loss is a larger problem. Now here's an article by Rosemarie Kasper with a similar message. Thanks to "a,b,c Reports" and the League for the Hard of Hearing for permission to share this article with you.

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For many years I considered my loss of hearing to be a secondary disorder. Born with osteogenesis imperfecta (OI), a fragile bone condition, I have used a wheelchair throughout my life. The hearing loss, which is associated with OI, started when I was about ten, and I began wearing a hearing aid at age 18. Little did I imagine then the incredible impact that hearing loss would have on my life through the years.

The real turning point was in 1986, when I suddenly lost total hearing in my right ear. I had been wearing binaural aids, and being forced into the world of monaural hearing was shattering. During the months and years that followed, I realized ever more clearly that my hearing impairment does in fact have a primary impact on my life in a multitude of ways.
It also became increasingly apparent that a visible condition, such as using a wheelchair, has distinct advantages over an invisible disorder such as hearing loss - especially in the matter of services.

The State of New Jersey, for example, had allocated $440,000 for the Division of the Deaf and Hard of Hearing (DDHH), with no increase in funding FOR A DECADE! The DDHH has just one office serving the entire state, there is NO Assistive Devices Demonstration Center, and NO Hard of Hearing Specialist to serve as resource/consultant. (Editor's Note: Thanks to effective advocacy, increased funding has just been allocated to the DDHH for FY2000.)

With a wheelchair, most people immediately know what type of help is needed and what situations should be avoided. With a hearing loss, they either have no expectations or negative expectations. They typically dismiss the disorder as being just a nuisance, effectively precluding the person from the conversation, or shout, exacerbating the problem.

The wheelchair rarely prevents my being active in groups or enjoying the theater. When my hearing loss was less severe, I participated in many organizations and was privileged to serve as the president of several. At present I am unable to serve effectively on boards or committees unless realtime captioning (CART) is provided or someone takes notes for me, and socially, am restricted to interacting with no more than two persons at one time in order to comprehend what is being said. I had not been to the theater for at least a half dozen years until captioned movies and captioned live theater were introduced recently in two nearby theaters.

Although I had read about assistive listening devices (ALDs), I could find no local dealer. Finally, in 1987, I learned that ALDs would be exhibited at a hearing fair in Westchester, New York. I attended and felt like Alice in Wonderland surrounded by these magical devices. I purchased an FM device as well as a bicros component for my hearing aid.

Through the years I purchased eight to ten increasingly powerful hearing aids, in addition to a wide variety of other ALDs including an infrared system, hand-held microphone, TTY, visual alerts for smoke alarm, telephone, doorbell, and alarm clock, closed captioned TV, and others. Many were quite costly. All of my wheelchairs and related mobility equipment have been covered by insurance. NONE of my hearing equipment was covered.

Through contacts with other persons with serious hearing loss, I recognize that my problems are not unique. Both wheelchairs and hearing aids can help people with disabilities to remain productive citizens in the mainstream of life. Yet programs for the mobility impaired generally receive ample funding while services for people with hearing loss too often are virtually ignored. WHY??? The absence of a hearing aid would render me almost as helpless as the absence of a wheelchair, just in a different manner.

I had never encountered problems on the job due to my wheelchair, either clerical, teaching, or later, as a rehabilitation counselor. However, I felt compelled to take early retirement due to my progressive hearing loss. Assistive listening devices had become much less helpful to me and counseling requires excellent communication skills both in person and on the phone.

People with hearing loss need resources, such as Assistive Devices Demonstration Centers and Hard of Hearing Specialists, in order to learn in a more timely manner about state-of-the-art devices and services. These resources are minimally available at present and as a result, those of us who are affected by hearing loss often are prevented from functioning at our maximum potential. In my own case, I would have been able to function more effectively both on and off the job for a longer period of time, had I known about needed assistive devices sooner.

Throughout history, people with hearing loss have been stigmatized and treated as second-class citizens. As a new Millennium starts, I hope that we will see a solid investment in more and better services for people with hearing loss, a very under-served population.

Editor's Note: Rosemarie Kasper, a retired vocational rehabilitation counselor, has published many articles on disability issues. The focus of her advocacy efforts in recent years has shifted from wheelchair to communication access.