I came out in 1991, over a decade into the AIDS pandemic and just before effective treatment would be available for those with access to health care. I grew up hearing echoes of the AIDS activist movement, in a small town in rural Washington state.
I knew about ACT UP (the AIDS Coalition to Unleash Power, a grassroots network of activists) before coming out, even though that was hard to do, living in small town and back before social media. Coming out right after graduating from high school, I soon gravitated to its direct action and in-your-face style of activism, in part because I read a book by one of its founders, Larry Kramer. Kramer considered government neglect of the pandemic genocidal; the collective embodiment of hate as indifference.
My late teens and early twenties were a turmoil and it took nearly ten years for me to recover from the depression this caused. Funerals, including political funerals with open caskets marched down Pennsylvania Ave. were a regular part of those years for me. I lived in real fear of HIV infection. I lived and worked with people who were living with AIDS – without access to effective treatment.
AIDS for me was more than how I learned about direct action, radical politics, and the power of standing up and speaking with one voice. It was also how I navigated safety, connection, and meaning during my formative years as an adult and a gay person.
COVID-19 is my second pandemic. There are differences and similarities between these two life defining experiences for me. Unlike the perception of HIV/AIDS, the perception of the current pandemic is that COVID-19 affects everyone. We see that in the level of initial response to COVID-19. But in reality, COVID-19 is like HIV/AIDS in that, perception aside, today’s pandemic results in unequal harm to marginalized communities.
Already, we see generational indifference: Most deaths are happening in nursing homes and the most likely to experience severe health issues or to die from COVID-19 are people in their 70s and 80s. This is partly due to underfunding, under-regulation, and (in many instances) the profit motive in our approach to care for older people (and others with long-term care needs). We are also seeing differences due to racism and poverty. Far from it, we are not “all in this together” – even though we should be.
Below are some of the lessons that I learned from HIV/AIDS that apply to COVID-19:
- Hope for the best but prepare for the worst – it may take years (decades even) before there is a vaccine, herd immunity, or effective treatment
- Build community and take care of each other – inclusion and compassion are entirely up to us (not the virus)
- Universal precautions work – individuals should be empowered with tools and information to protect themselves and each other
- Transparency and good government are essential to our lives – public health and universal access to health care are life and death matters
- Build trust in public health by holding it accountable – democratic institutions are as important as science right now
- Experts in science and health care must engage with non-experts in order to understand the context and the unintended consequences of their actions – dialogue in all directions is essential
- Build a “new normal” that’s fair, inclusive, compassionate, and joyful – if we are going to be in this for the long haul, let’s get back to living by taking care of each other through the good and bad times
- Justice must be integral to our response – this includes racial justice and reconciliation, and ending all other forms of marginalization, especially ageism and ableism in times like now
- Make the invisible visible – that’s how you hold power to account, engage in meaningful dialogue, and care for each other
- Dignity matters most – celebrate shared dignity (all of our our lives depend on it)
Living through my second pandemic I know some of what may come next. Death of loved ones. Stigma and fear. Erection of barriers between decision makers and those affected by their decisions. Simplistic approaches that simply can’t work. But I also know that people can rise to the occasion, science and democracy can work together for justice, and there is hope every step of the way.