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Listening to consumer/survivors from the deaf community

By Patricia E. Deegan, Ph.D.

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  • Rod saw people in a room speaking to each other and was concerned they might be talking about him. Mental health professionals told him he was paranoid.
  • Jan sought professional help for her depression but was told by a psychiatrist that her facial expressions and bodily gestures were too lively to warrant a diagnosis of depression.
  • Bill stomped his foot on the floor and waved his hand in front of his social worker's face. He was told this was attention-seeking behavior and was part of his mental illness.
  • Brenda raised her left nostril and upper lip as her psychiatrist spoke to her. She was diagnosed as having a nervous facial tic.

Rod, Jan, Bill and Brenda are deaf. When Rod is concerned that people in a room with him may be speaking about him, it is because he cannot hear what they are saying. It is not because he is paranoid. When Jan uses American Sign Language she uses her facial expressions and her whole body to communicate even when she is depressed. When Bill stomped his foot on the floor and waved his hand in front of his social workers face, he was seeking attention but there was nothing crazy about this. Foot stomping and hand waving are two of the ways that people who are deaf let others know they wish to speak. Brenda raised her lip and nostril, not because she had a nervous facial tic, but because that facial expression means, "Yeah, I know" in American Sign Language.

I recently had the opportunity to interview J. Rod MacInnes and Jan Devinney at a Drop-In Center in Portland, Maine, for consumers/survivors who are deaf. Both Rod and Jan have spent time in psychiatric hospitals, have made significant advances in their recovery, and now are using their experience to create better and more accessible services for consumer/survivors who are deaf. However, their journey of recovery has not been easy.

When Rod was hospitalized in the 1970s, he says, "There was nothing. No services for deaf people. No interpreters. Nothing at all. And to make matters worse they assigned me to a psychiatrist from China who did not speak English very well. That was a sight. A deaf person and a psychiatrist from China trying to communicate with no interpreters!"

Jan was hospitalized only nine months ago and although we would hope that things had improved since the 1970s, this was her experience: "It was horrible! I was not given interpreters. I was very alone. Because I am deaf I had trouble understanding what people were saying but they insisted I attend groups. There was no TTY so I couldn't receive phone calls from advocates or friends. I couldn't even call home to have my belongings brought up to me."

Rod survived his hospitalization because he could lip read, speak English and, with some difficulty, be understood by people who hear. Jan survived her hospitalization because a friend who was fluent in sign language provided peer support and advocacy. However, once out of the hospital, things remained difficult for both Jan and Rod.

Rod was discharged from the hospital to a mental health center that had no interpreters and no staff who used sign language. After enduring this type of isolation for tow years, the agency finally hired an interpreter "and finally I could access some mental health services and the world around me." Rod attributes his recovery to "learning to be fluent in American Sign Language, which helped break the depressing isolation by meeting more deaf friends." Rod also says that holding a job and participating in a psychosocial clubhouse helped in his recovery process.

When Jan was discharged from the hospital she also encountered barriers to accessing services. "I wanted to attend a peer support group for people with depression but that is difficult when everyone in the group is able to hear. I can lip read but you only pick up about 30% of what is said. Plus I wanted to keep my anonymity while attending this group. How am I supposed to keep my anonymity when I have to fill out forms to get an interpreter and state the reason for using the interpreter!" Working with other deaf people with psychiatric disabilities, learning to be a strong advocate and maintaining friendships have been keys to Jan's recovery process.

Both Rod and Jan agree that because they are deaf and also have psychiatric disabilities, they experience discrimination and stigma in the hearing world and among people who are deaf. In the hearing world and often in mental health services, Jan says that, "People assume that people who are deaf don't exist or they can all read lips just fine and that they don't use telephone. It's expected that the deaf person will do all the adjusting to accommodate people who hear."

Acceptance is not easily won in the deaf community either. Jan says, "There is horrible stigma in the deaf community regarding people with mental illness. Most deaf people don't want to be associated with us. It's as if the deaf culture is saying 'there is enough stigma with just being deaf. We don't need people associating mental illness with our community as well.'" Rod adds that he is a member of two deaf organizations and he has not told them about his psychiatric disability for fear of discrimination and rejection. He says, "People are ignorant about the facts of psychiatric disability."

Despite the barriers they have encountered, both Rod and Jan feel that things can change. When I asked them about what changes would help they suggested that both "deaf only" services and integrated services should be a goal. Rod said, "There is a psychosocial club right across the street but many people who are deaf will not go because the members don't use sign language and the staff do not use it. Deaf people prefer to be with people they can communicate with freely, in their own 'voice' and in there own language which is American Sign Language. So a drop-in center where everyone signs is a must. Therapists and case managers who sign and who are preferably deaf and have a psychiatric disability is a plus. Then, as people get back on their feet, they will consider going to a integrated program if staff are hired who know sign language".

Another immediate concern of people with psychiatric disabilities who are deaf is the use of mechanical and chemical restraint. Because American Sign Language is their first and, for many deaf people, only language, being in mechanical restraint prevents them from communicating-i.e., using their hands for sign language. In addition, chemical restraint can result in a blank facial expression, flattened affect and slowed movement. This can drastically impact a deaf persons ability to use sign language effectively and thus "speak" for themselves. Restraint should be banned for all people with psychiatric disabilities but proves itself an especially barbaric practice when used on people who are deaf.

Just like other consumers/survivors, people who are deaf want to learn self-help techniques and to have access to alternatives to traditional mental health services. However, as I listened to Rod and Jan, it became increasingly clear to me that our consumers/survivor movement has a long way to go before our programs, books, videotapes, documentaries, conferences, etc., become accessible to people who are deaf. Here are some of the things that Rod and Jan suggested that might help:

  1. When we are planning our conferences we must make a special effort to outreach to the deaf community. We should contact our local Independent Living Center and the Department of Mental Health in order to find out where the programs are that serve consumer/survivors who are deaf. It is suggested that we make personal visits to these programs and bring our own interpreter if we do not know American Sign Language. Getting to know consumers/survivors who are deaf and inviting them to participate on our conference planning committees is advised.

  2. If a group of 50 consumers/survivors who are deaf were to be recruited for a national Alternatives conference, both Rod and Jan felt this would be a great opportunity to form a caucus and perhaps plant the seeds of a national consumer-run organization for consumer/survivors who are deaf. They also agreed that it would be a wonderful way to learn more about the consumer/survivor movement.

  3. Rod and Jan helped me to understand that for a variety of reasons, writing and reading is not necessarily easy for people whose first language is American Sign Language. You see, American Sign Language is not simply a matter of putting hand signs to each English word that is spoken. American Sign Language has its own grammar and syntax. Thus, many people who are deaf learn best by watching videotapes that include an American Sign Language Interpreter. We can begin to bridge the gap between the hearing and deaf world by having our self-help literature translated into a visual format using American Sign Language.

  4. The Internet has been a very important tool for many people who are deaf and who have computers. Currently there are no websites specifically for consumers/survivors who are deaf. Perhaps existing consumer/survivor "lists", discussion groups or websites could link with deaf sites to begin to bridge the gap.

  5. There are many websites providing information and resources of interest to people who are deaf. Some of these include the following:

In addition to these resources, Rod has compiled an introduction to deaf culture that I found very helpful. It is called, Everything You've Always Wanted To Know About Deaf People But Were Afraid To Ask. If you would like a copy please feel free to call us at the National Empowerment Center and we'll send one out to you. Our toll-free number is 1-800-power2u (800-769-3728).

Getting to know Rod and Jan has helped me understand that inclusion of deaf consumer/survivors in our movement can only enrich and enhance our organizations and our quest for social justice. In order to do this we must make the effort to overcome the barriers that separate us. It is my hope that this article is one small step in that direction.