More than 24,000 children are born with hearing loss in the United States each year. Boys Town National Research Hospital is a national leader in the diagnosis and treatment of children with moderate to profound hearing loss.

Information on Hearing Loss - My Perspective As a Deaf Person Working With Geneticists

I was born with Waardenburg syndrome that caused my deafness and I have bilateral, profound sensorineural loss. I have deaf parents and a deaf aunt/uncle. However, I can still hear a little with my hearing aid in my right ear. I attended Minnesota School for the Deaf and public school for the last two years of high school. After graduation, I attended Gallaudet University and colleges that provided interpreting services. I am not only involved with the deaf world, but also with the hearing world.

What I want to share with you all is how some deaf people feel about research in hereditary hearing loss. Some people are not happy, some are scared, some are upset about the research because they think we are trying to prevent more deaf generation. I have learned that some deaf people have received letters saying, "this will lead to better methods of treatment and hopefully one day, prevention". The word, "prevention" makes me angry. In the deaf world, many deaf parents with deaf children are happy and they don't see any problem with raising deaf children at all. They are proud to have a lot of family members; aunts, uncles, cousins, etc. Many deaf families hope for it to be hereditary. That is how deaf families feel. If the geneticist is planning to prevent those with Waardenburg, I will object because I feel normal and I don't see any reason to change. The geneticist need to balance this situation.

As for the hearing world, many hearing people with hearing loss want the prevention. Some hearing people are upset and want to know why they have deaf children. They see deafness as a lot of problems. They don't know what to do with their deaf children, such as:

Which sign language should they use to communicate with, such as American Sign Language, Signed Exact English, Oral or Cued?

Which school - residential, mainstreaming, or oral?

How would their children communicate with friends, etc.?

Some parents don't know what kind of devices a deaf child would need such as TDD (a machine that deaf people communicate with the phone), TV adapters (which are for close captioned on TV), various types of alarm clocks either with blinking lights or vibration signals, doorbell signals, hearing aids, "baby crying signals", etc.

There are hearing people with a hearing problem. They often call themselves "hard of hearing". This is not always technical true but they identify themselves that way. I would never identify myself as a hard of hearing person even though I can hear a little with my hearing aid.

Another group of people who have different opinions about their deafness are those with progressive hearing loss. They have a hard time accepting it because they don't know how to handle deafness after being a hearing person so long.

I see the point of hearing people who have deaf children and hearing people who lose their hearing. They face hearing loss differently than people, like myself, who have been deaf from birth. But hearing people need to see that deaf people have a much different perspective. We identify deafness as a fact and normal. I am comfortable with the idea of having deaf children. Even though I may be curious about genetics and interested in what genetics can do for my future generations, I need to be convinced that this is not just another case of "Poor deaf people. Let us change them". You need to help me understand this.

How it Was, How it is

My life as a deaf person is not that terrible. Let me compare my deaf parents' life with my life. During my parents' time, they didn't have interpreting services, or closed captioned TV. They only had one access to the hearing world through a big machine for phone conversation. That kind of machine was donated to deaf people from the Army. The Army used it for their telegrams. That machine was big and heavy and made lots of noise. My two hearing sisters had to bear with that loud noise. Anyway, my parents always carry paper/pad and pen all the time to communicate with hearing people and even for job interviews. They handled it fine. If they had an emergency, they usually ran over to a neighbor's for help. They have gone through some hard times. But as for my life, I am much better off than my parents because I have better devices and services nowadays. I do understand how people can handle it. Also, that deaf people have better access to the hearing world nowadays, such as interpreting services; closed captioning on TV; TDD relay services, and TDD emergency services such as police, fire department, crisis line and hospitals; some motels; travel agencies, and some organizations.

I do know how hard the geneticists and researchers try to prevent some syndromes such as Usher, Branchio-oto-renal, spinal meningitis, Alport, etc. I am sure deaf people in deaf culture would understand this with no hard feelings because people with some syndromes have been through difficult times, and their deafness makes it more complicated.

All in all, what I am trying to tell the geneticists is to understand the different perspectives of people with hearing loss. And I want you to be aware that many people are happy for what they are and some are not unhappy. Many deaf leaders have worked hard to obtain services needed by the deaf community such as interpreting services, phone relay systems, etc. like I mentioned earlier. They are not just to fulfill the needs but also to educate people about what deaf people need and to improve services. Also, many deaf people want to keep deaf schools open. They have approached come Legislators to explain why they need to keep them open. In the meantime, they are very concerned about future deaf generations, and if the deaf schools will stay open. What kind of social life will the children have when deaf schools close, etc. The reason they feel this way is because they know that the majority of deaf children who come from hearing parents who will want to prevent deafness. If they do that, deaf people are afraid the schools will be closed. They will assume that a geneticist will also encourage them not to have deaf children. However, I am asking you to be aware of this and understand why deaf people in deaf culture feel that way. I would encourage you to explain to people who have a hard time accepting hearing loss or to parents who don't know how to cope with deaf children that we offer many services for their living needs and ways to gain access to the hearing world.

I want to share something with you. When I was young, my family doctor said that I had Waardenburg syndrome and he said that it would not be a good idea if I marry a guy who has Waardenburg syndrome. He did not explain why. I went home and wondered why he said that. A few years later, a married couple with Waardenburg syndrome decided to start a family and I warned them what my family doctor told me, but they wanted to have deaf children. First they had a deaf son who looked like me, and then they had a second deaf son with more depigmentation all over his face and body. He has to avoid the sun as much as he can. He has problems with eye ducts. He went through some frustrations dealing with this. The parents regretted not listening to the doctor in first place. I asked them why they did not listen and they said that their doctor did not clarify what kind of complications their son would have to deal with.

Visual Aids

It would be a good idea if the geneticists could show some diagrams on how they would look rather than using complex terms to describe what they would look like. The complex terms will just go over their heads. I feel that people would ask more questions when they see diagrams to make sure they understood what they were being told. I feel that many people are visual people, not listening people, like myself.

Qualified Interpreters

It is very important for the geneticists who are unable to sign to use qualified interpreters. They must be very good and many cities have interpreter services. You can find their phone numbers in phone books. Do not rely on untrained signers. Be sure to talk to deaf people, not to the interpreters. It is important is because they interpret in different ways. Some interpreters may have various signing styles which do not suit to deaf people's preferences. Some interpreters have excellent expressive signing but may have poor receptive skills and are unable to understand what is being signed to them. I suggest you contact some deaf leaders to find out which interpreters would be good for genetic counseling. I would like to emphasize that geneticists have an important role in helping hearing people see deafness itself not as a devastating condition. Parents should realize that the deaf world is as comfortable as the hearing world. All it takes is understanding.

Brenda Wernimont

Brenda has an A. A. in computers. At the time she wrote this, she was the coordinator at the National Research Register for Hereditary Hearing Loss, the predecessor of the NIDCD Hereditary Hearing Impairment Resource Registry.

Date Originally Created: Fall of 1990

The information presented here first appeared in publications of the Boys Town National Research Register for Hereditary Hearing Loss, the National Institute on Deafness and Other Communication Disorders (NIDCD), Hereditary Hearing Impairment Resource Registry (HHIRR), or the Boys Town Research Registry for Hereditary Hearing Loss.

The Boys Town Research Registry for Hereditary Hearing Loss

The Boys Town Research Registry for Hereditary Hearing Loss (Registry) is designed to foster a partnership between families, clinicians and researchers in the area of hereditary hearing loss/deafness through three primary functions. First, the Registry disseminates information to professionals and families about clinical and research issues related to hereditary deafness/hearing loss. Second, the Registry collects information from individuals interested in supporting and participating in research projects. This information is used to support the third function of the Registry - matching families with collaborating research projects.

For more information, contact us at:

Research Registry for Hereditary Hearing Loss
555 N. 30th Street Omaha, NE 68131
800 320-1171 (V/TDD)
402 498-6331 (FAX)