Aids

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."