DEAF & DYING - Part 2
by Noreen Collins and Rich Smalley
AIDS within the deaf community is a growing concern. Issues of communication, culture, and availability of resources all play integral parts in handicapping the Deaf community regarding AIDS and education.

A video was created for Hartford public access television on the issue of AIDS in the Deaf community in October, 1996. Rich Smalley of AIDS Project/Hartford and Harry Vrenna of the Commission on the Deaf and Hearing Impaired recently sat down with Victor Marques, Doreen Simon Marques and Robert DeMayo, members of the Deaf community who were in the video, to discuss this critical issue farther.

The discussion opened with the question, what do they see as the key issues facing the Deaf community related to AIDS today? The overwhelming response was ignorance, embarrassment and shame. Doreen, who is a Deaf professional working with and for Deaf people, related her experience of finding out that her sister-in-law had AIDS. In retrospect, she realized that her reaction was due to ignorance, but initially she was disgusted, afraid that her sister-in-law might pass on the disease to her newborn baby. Victor concurred that though his immediate thought was not disgust, there was fear of her passing the virus onto his children. He recalled wondering if family members could be infected by his sister's perspiration. Such ignorance can be seen within the Deaf community as a whole.

Doreen signed that members of the Deaf community could be mean-spirited through ignorance. Several people told her that her sister-in-law must be a whore. Although she didn't owe an explanation to anyone, she shared that, in fact, her sister-in-law was in only one relationship with the same man for over eight years.

Another key question was how could the Deaf community break down the barriers of ignorance? Robert DeMayo, artistic director of the New York Deaf Theater, suggested that plays and the Internet may be alternative ways to educate.

Given that English is the second language of a large segment of the Deaf, visual representations are most effective. This is important not only for the Deaf community as a whole, but specifically for Deaf children within educational programs. Victor raised the question of how early a Deaf child should be exposed to AIDS education. Doreen felt that it must begin early with age-appropriate information. Deaf children, by nature of their hearing impairment, have less exposure to incidental learning. For example, a hearing child is constantly learning from what they hear around them including radios and overheard conversations. Deaf children only learn what is directly taught to them, so early education is vital. Doreen felt that many parents' level of discomfort on the topic of AIDS impacts the schools' ability to raise this issue.

Overall, they emphasized the need for the Deaf community itself to take the lead in making decisions as to what is appropriate and necessary for their own community. Historically, the hearing community has taken a paternalistic attitude towards Deaf people, giving the message that they cannot take care of themselves and need hearing people to do it for them. These three Deaf people wanted the message to be that they need to be in policy-making positions working alongside hearing people.

To that end, the A.I.D.S., AIDS Initiative for Deaf Services, Task Force was created two and a half years ago by a group of hearing and Deaf people from both the private and public sector, because service providers within the field saw the need for access to services for Deaf people with HIV/AIDS. Harold Vrenna and Noreen Collins of the Commission on the Deaf and Hearing Impaired were instrumental in establishing the task force which began to recognize gaps in every part of service delivery from education and counseling to testing, from case management to medical care.

Basically, agencies and programs often considered themselves accessible if they have a TTY, which is a device hooked up to a telephone and allows for access to phone communications. But listings that say they were TTY accessible often had voice messages saying that the number had changed. How would a Deaf person "hear" the new number? Some numbers were answered by hearing persons who didn't know what a TTY was, or that they needed to hook it up. When a Task Force member tried calling, the other party would often hang up, obviously not trained to know the sound a TTY makes over the phone line.

Counseling and testing is certainly an entry level service. It was found that it was only through word of mouth that people found out where they could go for interpreted counseling and testing. No one advertised that they had sign language interpreters. If that information isn't listed as a service, Deaf people automatically assume it won't be provided. AIDS Project/Hartford began to advertise in Deaf newsletters. It also identified the Hartford Health Department and Family Services Woodfield in Bridgeport that have access to existing AIDS programs. But there is still no literature that identifies where Deaf people can go throughout the state for counseling and testing.

An unofficial survey done last year by students at the University of Hartford identified fifty-six Deaf or hard of hearing persons in the Hartford area as having HIV or AIDS. The Connecticut Planning Group recently sanctioned a study that shows that Deaf people are at least 3 times as likely to contract HIV than a hearing person. Anecdotal information with the Deaf community notes that they are more likely to be identified in later stages of the disease when they may not benefit from the newer drugs. These numbers reinforce the Task Force's urgency in establishing case management services, as well as accountability by service providers. AIDS itself is a devastating disease, but when you take away access to communication, the death toll is that much greater. The A.I.D.S. Task Force, along with Deaf and hearing advocates, is doing a lot to make the message accessible. The need is urgent. It is time to be heard. Back to Part 1