Deafened adults: fallen through the cracks

by Dr. Kathryn Woodcock, 2002

THE HEARING BEGINNING

There seems to be a lot of assumptions about adult-onset deafness. The first assumption is that adults become hard of hearing due to age, therefore anyone who loses their hearing as an adult becomes hard of hearing. In addition to hearing loss associated with aging, known as presbycusis, there are many other ways adults become deaf. For my convenience, I made up four groups.

  • Medical – eg. virus, measles, meningitis, drug reaction
  • Surgical – especially due to neurofibromatosis type 2 (NF-2) removing the auditory nerve
  • Traumatic – accidental injury
  • Progressive – noise, hereditary, mystery (probably hereditary), aging

Traumatic and surgical causes typically occur “overnight”. Some medical losses can be equally sudden. These are not mild and moderate losses. With surgery and some injuries, damage to the nerves leaves no sound perception at all. With surgery, there may the advantage of some advance warning, but with sudden loss you go from hearing one day to deaf the next. With a sudden severe loss, even though some people with an identical degree of hearing loss may function as oral/hard of hearing, the lack of experience and the emotional reaction may make any residual hearing completely useless.

Progressive losses may be detected at the hard of hearing stage, but either slowly or suddenly cross over the line to become deaf.

With gradual losses, there is less shock and more opportunity to adapt—learn to lipread by instinct, learn to use the residual hearing. But there is also more chance to deny the existence of the hearing loss or the degree of the hearing loss, since the change is so gradual it goes unnoticed. Or the gaps in hearing only seem to happen some of the time.

I know this one well, because I have a progressive hearing loss. No known reason, but its pattern is typical of many hereditary progressive cases.

When your hearing only fails you some of the time, it is hard to break old habits like asking a question when you are not ready to lipread. But little reminders like this are not too intrusive because your habits reinforce your belief that you can hear just fine. For example, you tend to make friends with people you find easy to lipread—I never had many very short friends, and lost touch with a ten-year pen pal after she moved to Toronto because she talked too fast.

You turn up the TV because you can hear the voice better but you don’t realize that you aren’t understanding any better. But you don’t know that you aren’t understanding it well, because you have no way to know what other people DO hear. For me, it was the telephone.

You hear the voice and you mm-hmmm along and you really think you’re hearing it. Your expectation gradually decreases from being able to understand every word to being able to catch the general concepts. My turning point was a telephone call where I needed the exact words, names, and I couldn’t guess them, even though they were a closed set.

I realized then that it didn’t matter that I could tell there was a voice there—what was important was what they were saying. I hung up the phone. I saw an audiologist who really reinforced that I had a deaf audiogram. Even though I had lived with a hearing loss for a long time, I learned a couple of important things.

First, you don’t have to live in total silence to be deaf. Deaf is when you can’t rely on being able to understand the other person when you pick up a ringing phone. And you don’t need to be born deaf to be deaf. That being the case, I decided that I must be deaf.

THE MIDDLE

Well, if anyone knows how to cope with not hearing, it’s the born-deaf people, so I decided to learn their language. I realized that my years of visual compensation for not hearing made it extremely easy to learn how to sign. In fact, my two hours a week in that classroom was the only time I could relax. From my years in the hearing world, I was used to guessing all the time, so it didn’t bother me that I initially only caught a fraction of the signs.

Through The Canadian Hearing Society, I learned of a support group of deafened adults. What I heard of their experiences made me feel that there were still more things about my experience that were not so unique. I met adults deafened from all different causes. Some of them signed and others didn’t. Some could read lips, some couldn’t. The ones who didn’t sign or read lips used computerized notetaking, or pencil and paper, to get by. Some have had cochlear implants, others could not have them (such as the NF-2 cases), and others would not want them.

Another assumption that people make about deafened adults is that they all want to continue to live the exact same hearing lives that they lived all along. This is often the initial reaction, expecially in the sudden cases. But the successful adjustments are often those who give up this idea.

When I went in October 1990 to Chicago to attend the second international conference of deafened adults (ALDA—the Association of Late Deafened Adults), I was shocked to see 300 equally-shocked deafened adults. The first conference the previous year was attended by about 40 people, and I think everyone expected to see maybe 100 people at the reprise.

My first impression was that about 3/4 of these people were signing, at least ineptly. That is to say that the majority of people showed a willingness to do whatever they needed to get a message across, even if they were not fluent signers, they would give it a try. With about three years of signing under my belt, that made the conference very welcoming to me.

For the first time in my life, there no barriers to talking to anybody I wanted to talk to. Strange, though, there was nothing that I needed to say, because all of these people had been through the same experience as I had. In a group of six people, only one needed to talk because the other five could just say, me too, me too, … Meeting these people made me realize that I was not unique or defective. I was normal: a normal deafened person.

DEAFENED END

Another thing I noticed about the people at ALDA was that most of them were smiling. These were not grieving people, wishing to become hearing again. In the heart-to-heart support-group sessions, it was obvious that people were coping with a great deal of pain because of becoming deaf, but it seemed to me that most of the pain was from the way they were treated by other people at various stages. There was a lot of frustration trying to meet everyone’s expectation that your life would just resume the same way as before. One hearing life, minus the hearing.

Laurel Glass, a researcher into adult-onset hearing loss at the University of California, San Francisco, did a survey of people at the conference and asked what was the most helpful thing people did to cope with their deafness. The most common answers related to learning sign language and meeting other deaf people, both born deaf and deafened.

Yet most people there still lived and worked with hearing people. How can this be? Simply that having a deaf identity is a positive attitude. It is not an identity that something is missing.

Using an interpreter—no matter how well or mediocre you can sign—helps you to understand people in the hearing world much better and unobtrusively than trying to lipread during a meeting or class, for example.

People who can’t get work successfully with interpreters can demand captioning. In Massachusetts, it is now mandatory to provide real-time captioning for all federally funded services if a deaf person wants that instead of an interpreter. Not notetaking, but computer assisted real time court-reporter captioning.

And yet the system has two categories: deaf and hard of hearing. If you are not born deaf, then you must be hard of hearing, and automatically the system assumes that you prefer to learn to lipread and keep as much of your life unchanged as possible. After all, your family and friends won’t learn to sign. Who has any deaf friends when they first become deaf?

With assumptions like these, deafened people fall through the cracks. When you learn sign language, you meet people who do sign. They understand you a lot better than the people who are trying to convince you not to learn to sign because it is more convenient for them that you don’t change.

When you become deaf as an adult, you have already changed. Learning to sign is just a way to adapt to that change. I’m a great lipreader, but it’s too much stress for me to do everyone else’s communicating for them. Because I speak clearly for their convenience, it is easy for them to forget how to speak to make themselves understood. Signing is my way to declare that I am not hearing and I expect other people to do their share.

The theory that lipreading will preserve the old hearing lifestyle is based on hard of hearing experiences. Hard of hearing people can use amplification: hearing aids, assistive listening systems, volume control telephones—to supplement their lipreading. Deaf people cannot. Being able to hear in the past does not change that. Preferring not to become deaf does not change that.

Professionals and deafened people need to realize that deafened adults are deaf and not hard of hearing. For every deafened adult who succeeds just with lipreading, there are probably ten who feel like such failures that they don’t leave their homes. Because everyone is telling them that they should be able to do it, and they can’t. On top of the loss of the sense of hearing, this is unfair and unrealistic pressure from family, friends and professionals.

Sign language for me has been a gift. It gave me a way to remain active in the hearing world without being a constant interruption, a way to make my deafness visible better than my old red hearing aids ever did. For other people, one course in basic signing gives them a sense of communication by gesturing and a sense of being centred in a different world than before. That gives them the freedom to ask for and get captioning for their work in the hearing world.

The important quality is not whether it is captioning or an interpreter, but that you don’t have to do it all yourself just because some system thinks that it is more convenient that way. I know people whose lives have been saved by this very principle, and people who lost their lives because they didn’t get it in time. The time to recognize the special needs of deafened adults is now.