DEAF & DYING - Part 1
by Noreen Collins and Rich Smalley
Mike moved back to Connecticut to die.

He had lived in New York, knowing there is a large Deaf community and a good social services network. Deaf people congregate in larger cities, where there are convenient transportation and a network of accessible service providers. That network includes vocational rehabilitation, education, mental health services, and assisted daily living. Larger cities also offer civic and recreational services and Deaf chapters of various organizations. Within the Deaf community, a variety of social and consumer advocacy groups focus on the common need that brings Deaf people together...COMMUNICATION.

Mike's first language was American Sign Language, known as ASL. It is a language distinct from English, with its own grammatical structure. Mike felt confident that there would be a large group of people who could communicate in his own language and a social services system likely to be more accustomed to Deaf people and their unique needs. Knowing how to purchase and use the services of a sign language interpreter, having a TTV (teletype writer) available, and calling through a relay system are all part of knowing how to function within the Deaf community. Others before him would have fought the battle for accessibility. Employers, doctors and educational institutions would already understand his need for interpreters and their responsibility to make their services and programs accessible to someone with a disability.

Now, Mike had AIDS. When it came to dying, he wanted to be with family, so he returned to Connecticut. However, there were few services. He tried to establish a support group, but the stigma attached to having AIDS is even more an issue within the Deaf community than in the hearing community. He wanted to network with other Deaf people with AIDS, but there was no way to connect with them. He was also frequently unable to communicate with his health care providers due to their reluctance to obtain qualified interpreters. Already exhausted by his disease, Mike was forced to advocate for services routinely provided to HIV+ and hearing persons. He knew he was dying and wanted to reach out to his community, both to find comfort for himself and to help others. Instead, he felt frustration, anger, helplessness, and despair.

The concept of culture and community within the Deaf population is unique in that it crosses all lines of race, creed, gender, economic status and sexual orientation. Communication is what brings the Deaf community together. The ability to communicate in sign language determines whether someone is part of that Deaf community. Someone can be audiologically deaf (small "d") and still consider him/herself part of the greater hearing community. If a person is self identified as Deaf (big "D"), that connotes the use of ASL as his inherent mode of communication, and a sharing of the rich history that the Deaf culture offers. A Deaf person may or may not be facile in using oral or written communication with hearing family members, colleagues, or friends. The fact that they sign allows them access to that culture, but they have fought not to be swallowed up by the larger hearing society.

Only recently has ASL been acknowledged as an actual language, albeit with no written form. In the past, they simply thought Deaf people used bad grammar. However, if each person were using bad grammar, why were the "mistakes" all the same? When a Deaf person used the written form, why were their nouns first, followed by adjectives - such as "car red"? Why was the verb "to be"(am, is, are, was, were, be, been, being) always eliminated? Why did a question word (who, what, where, when, why) always come at the end of the sentence? Were these just incredible coincidences of grammatical error, or was ASL another language that was not being recognized? With the assistance of Deaf signers, researchers have come to realize that American Sign Language has all the features of a living, growing language. Seeing a play performed with sign language interpreters or, better yet, with Deaf actors, dispels any notion that ASL is just hand gestures thrown together in a haphazard way, representing little more than basic concepts. ASL, in its own way, is just as abstract as any other language.

Given the knowledge that this non-uniform language brings together a community of people, it must be understood that this community generally works, plays, lives and prays together. Deaf people, just like any other minority, tend to associate with those who feel, act, believe and act similarly. Deaf people may choose to work where they have other people with whom they can communicate. They will go to Deaf events that are accessible to their communication needs. They will marry other Deaf people or hearing people who know sign. They will attend a church or synagogue that has Deaf services. Such interweaving of the community will also provide fertile ground for rumor, gossip, or innuendo. Keeping a secret Deaf community is hard, because people often come together on so many different levels. They often say within the Deaf community that Deaf people are much worse at gossiping than hearing people. This is known as the " Deaf grapevine." Before the advent of TTY's, closed captioning, and computers, Deaf people had to rely upon "word of hand."

What happens if a Deaf person is identified as HIV+? A professional who can communicate with this person and help him deal with the issue of HIV/AIDS may also be a fellow softball team member, a deacon in the church, or even a family member. So what are the options for Deaf people? One can go some place where no one knows about deafness but can provide confidentiality, although the communications might be less than adequate. He or she can go where they know their privacy will be breached, but where they know communications will be clear. The worst alternative is to do nothing, go nowhere, and hope this will go away.

Mike's problems are all too common throughout the Deaf community. The stigma of this disease impacts on people's willingness to seek out the help they need at every stage, from diagnosis, to treatment and to grief counseling. One's denial is also at work here. Within the Deaf community, AIDS is frequently seen as a "hearing" disease and not something that needs to be addressed. It is also spoken of as a "gay disease." The inference within the Deaf community is that if someone has AIDS, he is gay, or that if someone is straight, there is no risk of contracting the virus. The representation of HIV+ is often misunderstood within the ASL community. The sign for "+" suggests something good or upbeat. Thus, if a Deaf person is told he is HIV+, it may be misconstrued to mean he does not have the disease. Another common saying related to HIV/AIDS, "It takes only one time." A Deaf person could easily think this means that he would be safe having unprotected sex only one time.

The Deaf community is a rich, vibrant network of people with its own culture, language, folklore, and heroes. Such inclusiveness can also cause alienation, withdrawal, and misunderstandings that lead to disaster. The issue HIV/AIDS within the Deaf community must be addressed not only by the Deaf community, itself, but also by those providing medical services, support systems, prevention and education. This means educating the community at large about the needs of the Deaf population, and developing and distributing appropriate materials for the deaf community. Recent studies show that HIV/AIDS disproportionately affects Deaf people more than hearing people. Awareness and education need to start here, so we can together stop this disease.

to Part 2