And, we became treatment experts ourselves. We learned (and wrote) about viruses, bacteria and fungi; red and white blood cells; B cells and T cells. And when HIV came to be touted as a manageable condition, we heard more and more tales of disastrous side effects. We reminded people that manageable is another word that’s easy to say if you don’t actually have HIV. At a time when medical personnel minimized the difficulty of enduring side effects, we relayed how HIV-positive people suffered through days and nights of nausea, diarrhea, neuropathy, lipoatrophy…you name it. We showed how our readers said, “Yes, we’re grateful for meds, but we still have a right to a full life without facial wasting and tingling feet.” As we had before, we questioned the appropriateness of using manageable to describe HIV.
We made an error, though, by increasingly leaving AIDS out of the picture. By referring exclusively to ourselves as people living with HIV, we created the illusion that AIDS was gone (it wasn’t). We did this more consistently after combo therapy swept onto the stage in the mid-1990s. By omitting the word AIDS, we did our own part to mask the sharp edges of the epidemic that had not gone away.
The HIV community is not now and never has been virally homogenous. Some people are living with HIV; others are living with AIDS; still others are dying. As part of the media, we don’t want to participate in a cover-up of AIDS. As part of the community, we don’t want to isolate any of our brothers and sisters. And so, until the epidemic is over, we are all living with HIV/AIDS.
There were other times when we did not get it right. Remember HIVers? Writing with tight word counts, we began using that one as early as 1997. Each time we changed people living with HIV to HIVers, we shaved off three words and filled the space with extra information. But we missed the ugh factor until some friends in the community looked at a cover line one day in 2003 and said, “What’s a hiver?” It had become, we realized, another inappropriate way of identifying people with their virus. The word is gone from our pages now, but we fear it has seeped into the language and done damage. Our bad.
While our efforts as part of a vibrant, creative HIV community have made a difference over the past 15 years, we’re not naïve enough to think that our linguistic work is done. Phrases such as down low, full-blown AIDS and AIDS sufferers still flourish, and some in the gay community continue to tag words such as clean or drug- and disease-free (DDF) on their dating site profiles.
Until the end of the epidemic, we will continue to question the vernacular so that one day these offensive terms, like HIV itself, will long be history.