One Editor’s Take on AIDS Advocacy
by Chael Needle
In the eighth grade, our social studies class had for one day a substitute teacher, Mr. Nwabeke. He may have been a last-minute replacement because, instead of continuing on with the week’s lesson plan, he chose to teach us something about himself. He shared with us his “odyssey,” as he called it—early life in Nigeria, college education in Europe, his move to the United States, his trials and triumphs.
He impressed me for at least two reasons. He possessed the confidence to teach about himself, when students hardly learned anything biographical about their teachers, and he possessed the creativity to teach outside of the box.
I think, as well, that he impressed me because I had not heard anyone talk about their life as one big sweep, a vista typically reserved for those mini-series I loved at the time, The Winds of War or Shogun or Bare Essence.
My working life at A&U might not rise to the definition of an odyssey, but I do like the idea of looking back to see what I’ve learned along the way. And what I’ve learned is that advocacy itself is an odyssey, with many wayfarers in the ebb and flow.
This month is a good time to look back, as the professional social media site LinkedIn is reminding me that I am celebrating a work anniversary at A&U. Twenty-one years!
If you want to get technical about it, I have been with A&U longer because I first started to help edit and write the magazine when I was an intern. In the English doctoral program at the University at Albany, SUNY, I needed to complete an internship for my degree requirements. I met with David Waggoner, founder, publisher and editor in chief of A&U, and he agreed to take me on board for the required hours.
I was eager to work for an HIV/AIDS publication, because the proposal that earned me a position in the doctoral program detailed how I would look at representations of “plague” in Western literature leading up to HIV/AIDS, and how those representations informed present-day stigma. But a funny thing happened on the way to the forum. I discovered that journalism could tell the stories of people living with or affected by HIV/AIDS in a highly accessible and immediate way. Academic research is fine, but it is hard to make an impact as an emerging scholar (unless you are a star, which I wasn’t) and my dissertation on literature and “plagues” and stigma would only ever engage a limited discourse community.
As an editor, I can be of service to people living with HIV/AIDS directly. Hands down this is why I do what I do. If I can help improve the lives of people with HIV/AIDS, then I am motivated. People often suggest other magazines for which I could work. Go work for Martha Stewart, they say. But, no, as much as I love that Connecticut fantasist, it wouldn’t be the same. A&U is a non-profit and its primary mission is to represent the lived realities of people living with HIV/AIDS and provide a forum for their ideas, issues, and needs. Better I learn how to fix brussel sprouts six ways or transform a Halloween pumpkin into an autumnal chandelier on my own time than miss this opportunity to be of service.
I have realized over the years that service needs to be steadfast. My dissertation may have been a one-off, but A&U is monthly and I have an opportunity to keep the fires burning around the clock. This seems right to me. I don’t think I am suffering from tunnel vision, but sometimes I think, “Why isn’t everyone in the world trying to do their part to meet the needs of people who are living with HIV/AIDS?” It’s mind-boggling actually, especially when you see how HIV/AIDS has been impacting Eastern Europe or sub-Saharan Africa or the South in the U.S.
Steadfastness, I still believe, will come to fruit. When I have taught and built lessons around HIV/AIDS, the students in my classes often repeat misinformation about the virus and it seems like it is 1983 again. Some talk about the dangers of sharing utensils with someone living with HIV. Some do not even know about the better health outcomes afforded by HIV meds. I have become frustrated that the facts about HIV/AIDS are not ubiquitous. The work is not done.
And that is why I am pleased to have witnessed a new generation of advocates come of age and established advocates again put their shoulders to the wheel. When I started at A&U, AIDS advocacy seemed to belong to service organizations and institutions. I interviewed representatives from Funders Concerned About AIDS, San Francisco AIDS Foundation, Bailey House—all committed and doing solid work but always through the framework of an institution. And sometimes AIDS awareness—at least for the wider public—needed the celebrity with the resounding voice, like Elizabeth Taylor, Margaret Cho, or Janet Jackson, all of whom have graced our cover. There were individual advocates, but they did not command the national stage as advocates like Maria Mejia and Mark S. King do today.
I don’t have any evidence that there was a lull in advocacy by those directly affected, but it does seem like there was a post-HAART slow-down. Maybe it was a time when people were trying to rebuild their health and focus on the difficulties and triumphs of living; and when people suddenly had a new lease on life and now had to recalculate the next five years, the next ten years, and so on. Maybe it was a time when they were traumatized by the deaths of their friends, lovers and colleagues; and when stigma made it hard for people living with HIV/AIDS to speak from their experiences.
However, something wonderful happened between 2000 and now. Maybe the Internet and social media allowed advocates a greater platform. Maybe people had stabilized their health as much as possible and could do the work of advocacy with more ease. Maybe long-term survivors grew tired of the isolation they were experiencing and wanted more community, at least, more social interaction. Maybe younger folks living with HIV were not so heavily burdened with the stigma of the first generation and could more easily step into the spotlight.
Whatever the reason for the boom, we have sought to make sure positive advocates have yet another platform in A&U to represent the community. Contributing writers like Hank Trout, John Francis Leonard, Corey Saucier, Claire Gasamagera, Jeannie Wraight, Philip F. Clark, Jay Vithalani, and Bruce Ward, among others, have strengthened and amplified the cause, as have cover story interview subjects living with HIV/AIDS like Tony Enos, Tom Viola, Deirdre Johnson, Thomas ButtenschØn, Eric Rhein, Karl Schmid, Raif Derrazi, Joe Average, Billie Cooper, Ken Jones (RIP), and Charles Sanchez (from the past couple of years alone). Like Mr. Nwabeke, all of them possess the confidence to teach about themselves and all of them possess the confidence to teach outside of the box.
I ended up completing my dissertation and earning a PhD, but by the end I had migrated to the subfield of Composition & Rhetoric, inspired by its emphasis on helping others write and helping to create better learning environments. And while I did not become an academic, I use this knowledge every day at A&U and all I can hope is that the world and the odyssey shared by AIDS advocates are better for it.
Chael Needle is Managing Editor of A&U. Follow him on Twitter @ChaelNeedle.