Looking Back, Looking Forward
Advocates Honor Four Decades of HIV/AIDS Advocacy as A&U Marks Thirty Years of Publication
by Chael Needle
Thirty years ago David Waggoner introduced Art & Understanding to the world. It was at first printed as a newspaper supplement and sought to create an archive of cultural responses to the pandemic—fiction, poetry, drama, essays, painting, sculpture, any work that could communicate the lived realities of people living with HIV/AIDS. As the nonprofit, nationally distributed magazine evolved into a four-color glossy, Art & Understanding morphed into A&U and become a more general interest HIV/AIDS publication, featuring treatment news, legal advice, nutrition and wellness information, and columns by Patricia Nell Warren, Aaron Krach, Noel Alumit, and Ruben Acosta, among others. The magazine continued to feature the arts but expanded our coverage of different kinds of advocacy. Our mission has always been to create a forum that saw difference as an asset in working toward common goals.
Over the years, A&U has featured many advocates who have shared their insights about HIV/AIDS advocacy and we thought our anniversary would be the perfect time to check in with these change agents. We asked advocates two questions, one that looked back and one that looked forward:
Looking Back: What single accomplishment in nearly thirty years of HIV/AIDS advocacy and activism inspires you?
Looking Forward: What might we aim to accomplish in the next five to ten years?
China White, an HIV/AIDS advocate featured in the June 2017 issue, contributed her take on the big picture: “What inspires me most about the advances in science and unrelenting advocacy of the past thirty years is the restoration of dignity and freedom to express ourselves intimately without fear of causing harm. The psychological burden that once accompanied this illness has been eliminated and words cannot properly express how grateful I am for it.”
China joins a chorus of advocate’s voices, each with their own take on the big picture, past, present, and future, as they continue to strengthen the HIV/AIDS community.
Butch McKay
Director of Positive Living Programs for OASIS Florida in the Northwestern Florida Panhandle, which celebrated its thirtieth Anniversary on October 3, 2021
Looking Back: Many events have occurred in the thirty years since A&U Magazine started. Most people will most likely mention protease inhibitors, along with PrEP and U=U messaging, but, as a Southern boy, for me the one event that stands out the most was the Southern AIDS Manifesto in 2002, developed by the Southern AIDS Coalition. That document was the first real report fully supported with data, to prove the Southern disparity in AIDS cases, AIDS-related deaths, as well as the disparity in resources and funding for care and prevention services. The South, the most uninsured part of the nation, was being shortchanged, although based on population had the largest number of cases and deaths. The Manifesto spotlighted nationally the level of injustices to where the government had to answer.
Looking Forward: We need to continue work toward an effective vaccine and a cure. Criminalization laws around HIV need a complete overhaul. Most current laws are fear-based and not science-based.
Tiommi Luckett
National Organizer, Transgender Law Center
Looking Back: The formation of the Positively Trans National Advisory Board inspired me to live authentically as a Black woman of trans experience living with HIV. I hadn’t seen myself represented in the HIV movement until we met in Chicago in 2015.
Looking Forward: Starting now until we don’t have to say it anymore, quality of life in people living with HIV even with an undetectable viral load must be at the forefront of the HIV strategy. I’m so thankful to the networks of people living with HIV who created the Demanding Better: An HIV Federal Policy Agenda by People Living with HIV.
Damon L. Jacobs
Marriage and Family Therapist, PrEP Educator
Looking Back: The single accomplishment that excites me most is the re-centering of sexual pleasure in the discussion of biomedical advancements in HIV prevention and treatment. For way too long HIV prevention has been edified from a medical condoms-only model, which rarely took into consideration the emotional and spiritual drives to connect and fluid-bond with others. Thanks to consumer-driven messaging, people are learning to embrace PrEP and U=U for the sole purpose of meaningful sexual pleasure without fear of HIV.
Looking Forward: If people are serious about Ending the Epidemic then they would aim to shift systemic structures that impede uptake of biomedical interventions. This includes challenging racial discrimination within the medical community, pushing back against CDC PrEP guidelines that encourage the policing of queer men’s bodies (i.e, three-month “counseling on condom use and any other HIV risk-reduction methods”), prioritizing medicine over morality, science over stigma.
Wanda Brendle-Moss
Independent Advocate
Looking Back: In some ways we’ve made inroads into reducing the numbers of newly diagnosed or, even better in some ways, bringing those who fell out of care…back into care. Many cities were joining End The Epidemic projects…gaining momentum…
Then…
Looking Forward: Something we were totally unprepared for…a new plague that is impacting people of all ages, all ranges of socioeconomic spectrum.
COVID-19…filling hospitals and morgues beyond their capacities. In New York bringing in the Great White Ship with the infamous Red Cross on her sides. Taking patients there to free up beds in mainland hospitals. Morgues overflowing…lack of enough staff or space.
This triggered PTSD in many of us who already survived one plague. We often were looked to as something like experts…if we were able to get our thoughts together to be of assistance….
Here we are, two years or so later…preparing for World AIDS Day 2021…questions of ending the epidemic remain on the tips of people’s tongues. There’s some resentment among we survivors of the early deadliest days of AIDS, at the rapid response to COVID.
It is my most sincere hope that we put aside whatever differences, resentments, etc., and form the mighty army of humans to help each other come out as a strong unified movement to End Both Epidemics…HIV AIDS and COVID.
Andrea Johnson
Founder, GIRL U CAN DO IT, INC
Looking Back: There is not one single accomplishment that inspired me, but there are many. When HIV began forty-some years ago many died internally thinking that their health condition was the end-all to their lives. With advancements in medication to a one-a-day pill or a monthly injection, to better healthcare and awareness, and now with the U=U science-based initiative, many with HIV/AIDS, such as myself, are living vibrant, hopeful, inspired, and empowered lives. We are also living and accomplishing our life goals.
Looking Forward: In the next five to ten years I pray with the advancement of medications a cure for HIV can be developed so another generation will not have to suffer through the stigmas and fears that plague persons living with HIV/AIDS still to this day. I also pray that the criminalizing laws that some states impose on persons living with HIV/AIDS are eradicated.
Bob Bowers
HIV/AIDS advocate
Looking Back: Over these last thirty years, I feel that the Internet and social media has been one of the biggest game-changers in the ongoing fight against HIV/AIDS.
For those of us living with HIV, it has provided a powerful platform to educate and empower ourselves.
It has allowed us to educate others, raise awareness in our communities and around the world, and address head-on the pervasive stigma associated with this disease. Newly infected, or long-term, our unique stories and experiences matter now more than ever. As a 38-year survivor and activist, I continue to do my small part. It’s heartwarming to see many newly diagnosed, along with oldtimers, sharing their journeys with HIV.
Looking Forward: Awareness and education remain key.
Stigma can be deadlier than the virus.
While we’ve made amazing progress, HIV/AIDS isn’t over until it’s OVER!
One new infection is one too many. “What If It Were You?”
Daniel G Garza
HIV Patient Leader Advocate
Looking Back: What motivates me to continue my work as a patient leader advocate is the Latino community. Latinos are considered the largest and fastest-growing ethnic community in the US. Latinos are also considered one of the groups most affected by HIV.
In June of 2013, the CDC took notice of the situation and launched the Reasons/Razones campaign. The campaign called on gay and bi men to give a reason for getting tested. The call of action moved the dial forward in a community surrounded by shame and stigma.
Looking Forward: I look forward to having conversations in the Latino community that include religion, culture, and social norms. In the hopes that we can start moving past shame, stigma, and silence.
Sex, sexuality, and identity need to be normalized so we can talk to the younger generations about prevention, protection, and self-care. We need the support of local political and religious leaders to get the message out to the community.
Matthew Hodson
Executive Director, NAM aidsmap
Looking Back: Effective HIV treatment is one of the greatest achievements of modern medical science.
As people living with HIV, we are partners in this. People living with HIV, many of whom died, were willing participants in the trials of those medications, sometimes experimental, often highly toxic, that paved the way not only for effective treatment but also for PEP and PrEP.
We have been collaborators in the medical progress made, prominent in pushing for better medical care and support. We have been leaders in fighting for treatment and PrEP access, in combatting stigma and in sharing the news that undetectable means untransmittable.
HIV activists and advocates did not just change HIV care, we changed healthcare.
Looking Forward: In the next decade I want an end to all HIV acquisition and AIDS deaths. This is in our reach but will only be possible if we tackle structural inequalities and dismantle the fear and ignorance that perpetuates HIV stigma.
Victoria Noe
Author, speaker, activist
Looking Back: The fight to expand the definition of AIDS to include women. “Women don’t get AIDS—They just die from it” was the absolute truth for the first decade of the epidemic. Until then, no proper diagnosis or treatment, the inability to qualify for disability, no access to clinical trials. They were invisible unless they were pregnant, and even then, the focus was on their unborn children. That it took four years of effort is disgraceful. But it was still a game-changer.
Looking Forward: The only reason why we are at the forty-year mark without a cure or vaccine is complacency. We have the tools to end the epidemic, but until we get angry enough to commit to it, it will remain beyond reach. I’m sure as hell not looking forward to a fifty-year anniversary without it being eradicated.
Ashley J Middleton (she/her/ella)
HIV Advocate and Queer Woman of Trans experience, Washington, D.C.
Looking Back: When I look back at history and think what sealed the path forward for HIV research in the twenty-first century, I think about the Undetectable = Untransmittable Campaign. For me this meant my dream wedding in the countryside and white-picket-fence happily-ever-after might not be over after all. This campaign singlehandedly changed my life and is changing the lives of millions of others across the globe.
Looking Forward: Over the next 5-10 years I would like to see an expansion in funding for vital service programs like ADAP and Ryan White, in order to support the mission of providing access to treatment regardless of socioeconomic status. Data collection methods need to improve so we have qualitative and long-term data about the continued impact our work is having on higher risk groups such as Transgender women and immigrant populations. After we have seen what we have been able to accomplish together throughout the 2020 COVID-19 pandemic, nothing is impossible. I’ve never been more inspired to do the work that is needed than now—let’s do it!
Chael Needle is celebrating twenty-one years at A&U. Follow him on Twitter @ChaelNeedle.