Every December 1st, on World AIDS Day, I take a moment to light a candle and say a prayer for those we’ve lost to this disease and those that still live with it on a daily basis. I put on a a red ribbon to honor those impacted by this epidemic.
Growing up in the 80s and 90s, HIV and AIDS were things that were heard about occasionally on the evening news, but rarely was discussed in every day conversation. It was a “gay affliction” and any association with it was mostly done with a distain for the gay men who suffered and died from this disease. This disease made it easy to reenforce a public discourse that viewed gay men as objects of ridicule and pity at best, repulsion and worthy of physical and emotional violence at the very worst.
This made growing up increasingly difficult for me. As a young adult coming to terms with my own identity being gay, my narrative was that people like me were dirty, sex-obsessed pariahs. There weren’t role models to show me how being gay was not a death sentence. The generation before me had been wiped out because of this disease. When I finally did come out, the question I got most often was “aren’t you worried?” This was of course relating to my own health and not contracting HIV, despite advances in prevention efforts and treatment for those affected because the two were synonymous. I was terrified of this disease. I hated this disease. This disease was a reminder that people like me were not cared for and wouldn’t belong.
When I was in my early 20s, someone very dear to me disclosed to me that they had been diagnosed as HIV positive. There was pain, there was worry. But more than anything, there was shame. How could they let this happen? It was no longer the late 80s, so how could this be a thing? My own discomfort clouded this conversation in a way that causes me no pride. I tried to refrain from judgement, but lacked success in doing so. Despite my best efforts, my own bias prevented me from exhibiting grace in the time someone needed it the most. Various other people would disclose their status to me throughout the years and I hope that they found a stronger support than I had given before.
After some time had passed and I had grown in my understanding and emotional capacity, I made the decision that I had to contribute to this conversation. I wanted to change the narrative of what it meant to be HIV positive and to provide more kindness to this community than I had once shown. I became deeply involved in a local AIDS Service Organization (ASO) that worked to provide services and financial assistance to those living with HIV and AIDS in that community. It was not about finding a cure or advocating for changes at a policy level. This was recognizing the humanity of this disease and working to promote the quality and dignity of life for people in my own community. I served as a lead volunteer and then eventually on their board of trustees, chairing their annual gala and raising funds to support their efforts. I have since moved away and had to step away from this organization. However, there are three lessons I learned as a result of this work that I still need to carry with me to this day.
- Service is the purest form of allyship. HIV hits low income communities of color with higher frequency. In social justice work, we talk about utilizing privilege to ease the suffering of others. This was the most tangible way I found to demonstrate the leverage of my privilege. My social, educational, and financial capital as a white, middle-class man could be used to support efforts to ensure that people had a way to pay their rent or buy a new mattress. I could talk the talk, but until I had a way to put my words into actions that made a difference in other people’s lives, social justice remained a selfish endeavor for me.
- We are at our best when we are in community with one another. I have never felt as supported as worked as hard until I worked in service of others. Not only was this because of the phenomenal people that were a part of this organization, but being able to connect to those that utilized these services and going out into the community to do education and advocacy work made me understand the importance of the work that the organization did and the role I played. This motivated me to push even more for this organization. By connecting to people’s lives and having them connected to mine, we created a sense of collective purpose and I found my best self.
- We can’t fix the past, but we can do better in the future. I wish I could go back and change things. But that’s impossible. For years, I avoided the conversation of HIV and AIDS. It was a source of shame for me for how I didn’t show the depth of compassion that I needed to. But being paralyzed by that shame accomplishes nothing. I needed to get off my ass and do something of service. It is in this service that I was shown the grace and kindness that I lacked before. And when I found it, I found it was easier to reciprocate.
HIV and AIDS is a topic that has gotten less and less attention recently with thoughts that we are now on the brink of a cure. It is no longer a part of any public discourse. And most funding for HIV/AIDS related-causes goes towards research, finding a cure, etc. However in this dwindling economy, there has been dramatic decrease of funding for those that are actually on the ground doing work in the service of others. To recognize the dignity of their lives.
World AIDS Day ended a couple of hours ago. I saw many people change profile pictures or walking around with red ribbons. Now I challenge you to do more. If you put on the red ribbon, walk the walk. Go to events, volunteer, or donate to your local ASO. As such, I am committing to making a monthly pledge in 2017 to Bailey House, an organization that has committed to serve the homeless population of NYC living with HIV/AIDS. While it isn’t much, it’s recognizing that we can no longer just go on by putting on ribbons and forgetting about it come December 2nd.