Just when I thought it was safe to be an HIV-positive American, I read that there are words that are no longer safe from extinction in terms of their use for the purpose of disease prevention. In the hands of thousands of federal medical professionals attempting to implement prevention efforts in the ongoing fight against AIDS, it has become all but impossible to make sense of the latest stigmatizing attack on the HIV community. Five of the nation’s leading organizations focused on ending the HIV/AIDS and STD epidemics in the United States—AIDS United, NASTAD, the National Coalition of STD Directors, NMAC, and The AIDS Institute—are alerting everyone working on the frontlines about the recent proposed ban on words that the Trump Administration wants to institute at the Centers for Disease Control & Prevention (CDC). The list of banned words include but are not limited to the following: “diversity, transgender, vulnerable, science-based, and evidence-based.” Since when did Americans elect presidents and their administrations and secretaries of health and human services to govern the use of words? In other words, have the “words police” taken over free speech?
Perhaps George Orwell’s chilling novels of authoritarianism like 1984 and Animal Farm predicted this inevitable prohibition of language to determine the viability of entire communities. Here we have an administration censoring the use of words that might offend conservative standards. But what about standards of compassion and care? Do we need to limit what the CDC is able to say in terms of improving the lot of persons (gay men and transgender persons among others) who are affected disproportionately by one of the worst health epidemics in American history?
One person who would find this “outlawing” of certain words very scary would be David Arquette, the older brother of transgender AIDS activist and performer Alexis Arquette (who passed away from AIDS-related causes less than two years ago). In Larry Buhl’s exclusive interview with David Arquette, star of the famous film franchise Scream and executive producer of the hit TV shows Cougar Town and Celebrity Name Game, the activist actor personalizes how debilitating prejudice can affect the health outcome of a loved one: “For someone so extremely outspoken, someone who stood up for people and what she believed, like being openly trans before a lot of people accepted that to not be open about [HIV] says a lot about stigma.” Sensitively photographed by A&U’s Sean Black, this is a portrait in words and images of a man who will make a great new ambassador for The Elizabeth AIDS Taylor Foundation. If only there were such great big brothers in every American family affected by AIDS. David’s love of Alexis’s courage and acceptance rings true: “I often play ’80s music to remind me of her. That’s where she owned who she was and started performing at clubs.”
The new wave group Missing Persons’ ‘80s hit song “Words” included the frightening lyric, “What are words for when no one listens anymore?” The lyric resonates today when so many people tune out transgender realities and the facts about HIV. That’s why I’m heartened that advocates and organizations featured in this issue are exercising not only free speech but using words that matter. They matter because they describe—accurately—the realities of people living with HIV/AIDS. LaWanda Gresham, interviewed by A&U’s Dann Dulin, says when she first heard “AIDS” she thought “death,” not an uncommon connection but one that was strikingly changed in 1996, a handful of years before she was diagnosed. A&U’s Hank Trout reports on an organization, P3, that is normalizing “positive” and “parenting,” showing how they are not contradictory terms. And A&U’s Alina Oswald has a timely interview with Avram Finkelstein, one of the creators of a 1980s’ poster and a slogan that illuminated the link between language and health outcomes: Silence=Death.
It’s a timely reminder how words, even at the CDC, are important to help destigmatize the epidemic and aid in HIV prevention at all levels of society.
David Waggoner is Editor in Chief and Publisher of A&U, the first national HIV/AIDS magazine in the U.S.