What Does World AIDS Day Mean to You?
We asked eleven advocates and this is what they shared
Text & photos by Alina Oswald

December 1st has a multi-fold significance to me, personally. On December 1 I’ve always celebrated my mom’s birthday, and I’ll continue to do that this year and in the years to come. It was my mother, an infectious disease physician, who opened my eyes to HIV and AIDS. (That happened years ago, during the first, and darkest, decade of the epidemic.) Years later, while starting to learn more about the epidemic, I found out that December 1 is also World AIDS Day.

First celebrated in 1988, World AIDS Day (WAD) was considered “the first ever global health day,” as noted on CDC’s website. AIDSinfo calls it “an opportunity to celebrate and support global efforts to prevent new HIV infections, increase HIV awareness and knowledge, and support those living with HIV.”

While trying to go beyond the more official interpretation and symbolism of World AIDS Day, I reached out to a few activists, advocates and allies, and asked them to kindly share their thoughts on this important day. Here are their answers, in their own words:

Omar Garcia, HIV advocate
A&U, October 2017
“World AIDS Day is a day of pride——pride about how much has been accomplished as far as treatments, research, outreach, and education. [World AIDS Day also] reminds us about important strides we still need to take for more changes in both government and our local communities.”


Michael Jeavons, Mr. Eagle NYC 2020
World AIDS Day means three things to me: It is a remembrance of all those we have lost and with them…the loss of their human potential that could have benefited society in billions of ways. It is a tribute to all those who continue to live their daily lives with the realities of HIV/AIDS, their tireless caregivers and the community [that] supports both. [World AIDS Day] is [also] a reminder that it is ignorance, stigma and prejudice that truly kill; that what happened in the early days of HIV/AIDS could happen again if we all are not forever vigilant in our efforts against these three insidious things.”

[In 2018 and 2019, Michael Jeavons participated in the Braking AIDS Ride. Next September he plans on riding with Team Eagle in the Cycle for the Cause 2020 ride.Follow him on Facebook @MrEagleNYC2020.]


Nancy Duncan, HIV activist and educator
A&U, May 2017
World AIDS Day is a day when people all over the world unite to remember dear friends and family members we’ve lost. Most importantly, it also brings much needed awareness that there are many people still living with HIV every day who are in this fight together until it’s over.”


Victoria Noe, author and activist
A&U, July 2019
I happened to be in London in 1988 on the first World AIDS Day, and I remember thinking, “well, good, it’s about time”. Now I use that day not just to remember but to recommit myself to the community. I often find myself burning out a bit this time of year, so it helps to have this reminder to get back to work.


Nurses on the Inside authors, Ellen Matzer and Valery Hughes
A&U, October 2019
While sharing their thoughts on the significance of World AIDS Day, they focus on this year’s theme: Ending the HIV/AIDS epidemic community by community.

Ellen Matzer, RN
World AIDS Day, for me, has always been about the memory of the generation of untapped potential [that] we lost. I think about all the talent we lost, the sorrow, the attempts at healing…about the long-term survivors, [and] what lies ahead for them….

“We encourage people to seek testing and treatment to become undetectable, but in many parts of the world that is not an option because the [HIV-related] stigma still exists.

“I don’t see communities rallying around their own people as we have become too politically divided over issues that should be placed on the back burner and some that need attention immediately. It seems as if Ending AIDS falls somewhere in the middle….

“We must end stigma, discrimination, and homophobia before we can END AIDS. We must think about the still disenfranchised people [who] fall through the cracks. We must have a government that believes that all people have value. Only then can we begin to heal and move forward.”

Valery Hughes, FNP, RN
World AIDS Day has always been an opportunity for me to engage people about the issues related to HIV infection. In the early years (the 1990s) we set up a booth in the lobby of the hospital (Lenox Hill) and gave out ribbons and talked to anyone who would stop and spend some time with us. The purpose in those days was merely to bring awareness and start the dialogue. We got a lot of pushback from people when we tried to introduce discussions of risk reduction (by giving out condoms or pamphlets about safer sex or needle exchange). It always amazed me that talking about sex was somehow unacceptable and that challenging ignorance was somehow bad even if it prevented illness. People are still odd that way——look at climate change. People will hide their heads in the sand rather than lose a dollar, even if it means their grandchildren will be without clean water.

“World AIDS Day is also a time to focus on self care, and this year the focus——ending the epidemic, community by community——affords us the opportunity to talk about what still drives the epidemic. Money, stigma, ignorance. What drives the epidemic in Mumbai might be subtly different than in New York City, but the same forces are at work. While I want to scream from the rooftops, I know that turns many people off, and so we have to refine our message so people can really hear what we have to say. Our people are worth saving, so within our communities we need to find acceptance, provide education and tools to prevent infection, and for those [living with the virus] provide affordable and tolerable treatment. We need to continue research efforts to refine those treatments and aim for the cure.”


Megan Rossman, professor, award-winning documentary filmmaker, and director of The Archivettes
“World AIDS Day makes me think of the incredible work of lesbian activists in ACT UP. Women are often written out of history and not given the credit they deserve. During the AIDS crisis, lesbians worked hard to create change.”


Ron B, celebrity host, actor and HIV/trans advocate
A&U, June 2018
“World AIDS Day should not only be a celebration, but also a reflection on what should be done to eradicate [HIV and AIDS] from the human race. This disease has affected so many….We need more education, and we need to reeducate people about HIV, because there’s still a strong stigma [surrounding the virus], and because young individuals, today, [need to] understand that they’re not invincible from making themselves vulnerable. This is something that we need to consistently talk about, because …the [AIDS] crisis [is still going on]. When this disease started, we did not realize that it was still going to be here, today. We need to find a cure.”


Rev. Yolanda, HIV/trans advocate
A&U, March 2019
World AIDS Day [reminds me] that I, an HIV-positive person, am still alive, while many of my friends in New York City and across the world are not. World AIDS Day reminds me that there are many people across the world that don’t have access to the kind of good healthcare that I do, and we need to continue to address that situation.”


Avram Finkelstein, artist and activist
A&U, June 2019

When Day Without Art project was first announced, I was ambivalent: critiques of the institutional meaning of art have always informed my practice as an artist and an activist, and I felt the poetics of the gesture had limited political use in a time of crisis. Here in the twenty-first century, however, World AIDS Day remains the only institutional act of witnessing, and has meaning as a performance of public memory. I believe it now has political use.”

 

 

 


Steve Hayes, actor/comedian and HIV advocate
A&U, April 2017
World AIDS Day is a reminder——of those we lost, those who fought and those who continue the fight.”


Alina Oswald is Arts Editor of A&U.