Aids

By DAVID VAN BIEMA

To anyone outside his special circle, the fate of a young Texan named James would have seemed as predictable as it was tragic. The Austin restaurant worker had developed the telltale red-and-purple lesions and had suffered night sweats, diarrhea and weight loss. Then came the inevitable coda; his doctor informed him that he had AIDS. In fact, his T-cell count was down from a normal range of 800 to 1,200 to a depressing 12.

But James, as he told his doctor, did not know what AIDS was. Nor did he know what HIV was, or for that matter a virus. He agreed to the recommended treatments, but aside from that, he lived as he had before -- including his active and unprotected sex life. He was sure he would get better.

James' hospital called in Stephan Kennedy, an outreach worker who deals exclusively with HIV-infected and AIDS patients such as James. To Kennedy the young man's incomprehension was painfully familiar. "I used a lot of analogies," Kennedy recalls. "I said, 'The HIV is a worm, and the apple is your body. The worm gets into your body, eats a little and then goes to sleep. Then it wakes up again and starts eating some more and some more and some more, until the apple becomes rotten. And that is what is happening to you.' "

That chilling explanation helped, but it was many more such conversations before James truly understood, shortly before his death. It wasn't that he was dumb; it was that he was deaf.

When the group ACT UP coined the slogan "Silence Equals Death" in 1987, it meant political silence. Already by that year, actual silence about the nature of AIDS -- whether through ignorance or timidity -- had been broached. Most Americans, and certainly most people in the then recognized risk groups, knew what the disease was and how one could get it.

Most, that is, unless they were deaf. Today, 13 years into the epidemic, the average deaf person may -- just recently -- have learned AIDS exists. But, say activists in the field, most of America's deaf adults and teenagers still do not know what "HIV positive" means, that it can be contracted from someone who shows no symptoms, how to have safe sex or avoid infection through needles, or that women can catch it.

Why should a deaf person be more vulnerable to the 20th century plague than a blind person or, for that matter, the average American? The answer, say deaf activists, is that their peers do not read English. The first language of more than half of America's deaf, whose number is variously estimated at between 250,000 and 2 million, is American Sign Language (ASL). That elegant mode of communication, a combination of signs and gestures, is not based on English. Thus the English reading level of the average deaf adult at the completion of formal education is usually placed somewhere between the third and the eighth grade. Says New York social-services counselor Donna Leshne: "The knowledge base is lacking. With all the ways we have of transmitting information, they're just not receiving it."

Some deaf AIDS activists can testify personally to the price of the gap. "I was very puzzled about AIDS," says Harry Woosley Jr., an AIDS/HIV educator in Baltimore, Maryland, who visits churches, apartment complexes and bars with a large deaf population, trying to get the word out. "I remember reading about it ((in the mid-'80s)). It was very technical, complicated and fuzzy information to me, so I just pitched it." The "complicated information" was newspaper and magazine articles; Woosley was found to be HIV positive a few years later.

The language problem is only the first barrier to understanding. Many deaf people have only a rudimentary understanding of anatomy, disease and medicine. African-American deaf people, who employ their own dialect of ASL, are yet more isolated from mainstream information -- and so more endangered. Residential schools for the deaf tend to be more puritanical than those for the hearing, and sex education is less comprehensive. Some social scientists also believe that needle drug use is higher because of alienation and loneliness. Even excluding such theories, says Susan Karchmer of Gallaudet University, the world's only four-year liberal-arts school for the hard of hearing, "all the factors that would make deaf people in this country multiply susceptible to HIV are there."

Leshne talks about clients so ignorant of the disease that "by the time they come to you, they're so sick, all you can do is hold their hand and hope they come out of it." A patient in Texas writes confidently, "I got HIV through sex -- now I stop sex and HIV finish." A doctor tells of a patient who believed incorrectly that " 'I have one disability, so I can't catch another.' " There are many like James, who know they are sick but continue having unprotected sex, not out of callousness but confusion.

Once a deaf person contracts AIDS, its horrors are magnified. John Canady, the scion of a multigeneration deaf family in California, signed so exquisitely that he served as a model for an ASL textbook. His eloquence meant ) less than nothing when he ended up in a San Diego hospital with an AIDS- related crisis. Not only did his attendants fail to provide an interpreter, they also tied his hands to a gurney. Trapped for hours in the classic nightmare of I-want-to-scream-but-some one-has-his-hand-over-my-mouth, Canady died shortly after friends found and released him.

The average hospital's public address system, non-ASL-trained staff and often complex written directions and appointment schedules are daunting for most deaf people even if they are just having their tonsils out. For AIDS patients, who may see half a dozen specialists for various complaints, the difficulties constitute a diabolical maze. Nor do many doctors reach out to make things easier. Most AIDS caseworkers with deaf clients can name one who was simply handed a piece of paper saying, "You have AIDS," with no follow- up. Quanquilla Mason, a deaf and blind New Yorker who has since died, remembered going into emergency surgery. "I was afraid," recalled Mason, "and the surgeon wasn't making any effort to explain to me what he was doing, and I was asking, 'Please let my interpreter come, please let her come explain to me what you gonna do?!' " Although federal law vouchsafes a right to interpreters, financially strapped hospitals often slide by with a minimum of service. Deaf AIDS patients nationwide are used to screaming, moaning and banging things just to alert hospital workers to their needs.

In 1991 about 100 activists across the country formed the National Coalition on HIV and the Deaf Community. Its members work at a scattering of clinics and outreach programs for the deaf. Some have drafted pamphlets using sign- language pictographs and explicit illustration to overcome the literacy problem. (A sample title: "AIDS -- WHAT MEANS? AIDS -- HOW STOP? LEARN ABOUT AIDS!") Others, noting, as one put it, that "the written language of ASL is videotape," have taken to camcorders. An HIV-AIDS hot line accessible to the deaf using small teletypes called TTYs can be reached at 800-243-7889. But few activists have been able to secure funding for their efforts.

A case in point is Kennedy's Los Angeles-based AIDS Education/Services for the Deaf, pre-eminent in its field in 1990 thanks to a three-year, $432,000 grant from the Centers for Disease Control in Atlanta. AESD barnstormed the country, giving three-day training classes to hundreds of deaf activists on how to alert people to this "new" disease. They were a hit in 25 cities and < were invited to 37 more. But the grant was not renewed. AESD had failed, like most other deaf AIDS organizations, to fulfill a basic requirement for steady government funding: a tally of the infected. Until recently, deaf activists who were asked for casualty figures would simply cite the number of panels dedicated to the deaf dead in the huge Names Project Memorial quilt, an undercounting any hearing AIDS group would deem ridiculous. Serious assays now start at 300; estimates of HIV-positive deaf run from 7,000 to as high as 26,000. But the deaf world's varied demographics and idiosyncratic lines of communication conspire against precision. "We have tried to collect our own statistics," laments Kennedy. "We have tried and failed."

The price of that failure is high. The Washington watchdog group AIDS Action Council can locate "no clear public funding stream" for deaf people. Officials at the Centers for Disease Control, tallying informally, are unable to name major current programs totaling more than $200,000. "In practical terms, that's two, possibly three salaries," including the necessary coverage of employees' health care, says the Rev. Margaret Reinfeld, an official at the AIDS organization AMFAR (American Association for AIDS Research) who recently sat on a CDC external review for prevention programs. "There's absolutely no question that the resources are grossly insufficient to the need." Adds Barbara J. Wood, board member of the mainstream National Association of the Deaf: "I wear a red ribbon every day. I am angry."

Warren Buckingham, until a month ago special assistant to Clinton AIDS policy coordinator Kristine Gebbie, agrees that not enough is happening. "There is a clear recognition that the deaf may be at special risk and may not be getting the lifesaving prevention messages their community needs," he says. "It may be time for the CDC and others to say very explicitly to ((geographic)) communities seeking funding, 'You must also carefully consider the needs of deaf persons.' " Buckingham claims that Gebbie would be willing to meet with deaf activists on the issue.

They will no doubt welcome the invitation, though with some skepticism. America has traditionally paid little attention to deaf people, so they are used to second-class treatment. It will take more than words to counter the fatalism expressed by Steven Collins, the current chairman of the National Coalition on HIV and the Deaf Community, as he surveys the current dilemma. "I'm sad but not shocked," he types on his TTY. "Deaf is a small community. Deaf is not important. Deaf people are dying because of that."