Professor Gary Bailey: Why the Coronavirus has me "Triggered”
If the response had been similar in the early days of the AIDS epidemic, I cannot help but think about all of the lives that might have been saved.
In honor of Pride Month, Professor Gary Bailey shares his thoughts on the comparison of the HIV/AIDS epidemic to the COVID-19 pandemic. Learn how the lack of response to the HIV/AIDS crisis differed from the swift actions taken by U.S. government officials when faced with COVID-19. This article was originally published in Bay Windows.
I have heard said by some in the media that HIV/AIDS and the coronavirus are similar. For me, and for many others that is a false equivalency.
HIV/AIDS activist Mark S. King in a recent article in HIVplus magazine put it this way:
“To attempt to draw blithe comparisons – oh! This feels so scary and there are lines at the grocery store and people have to stay away from each other. Hey, does this feel like when HIV happened…? — is an insult to the bravery and sacrifice of the living and the dead."
HIV is very different from the novel coronavirus in ways that could have made it easier to slow down. HIV is harder to transmit, and its incubation period is much longer.
Laurie Marhoefer in a recent article “Coronavirus: Three Lessons from the AIDS Crisis” writes:
“But in fact the response was slow. It took health experts decades just to notice HIV. Studies have shown that HIV jumped from animals into humans sometime in the 1920s, and had already killed lots of people by 1981, but doctors thought those patients died of other things. Even so, once HIV was recognized as a new infectious agent in 1981, fast action and massive investments in research would have saved lives. Instead, government officials sat on their hands. In 1982, White House Press Secretary Larry Speakes turned a reporter’s question about AIDS into a homophobic joke. It took four years to develop a blood test for HIV...
"The HIV crisis also showed that the concept of 'risk groups' is dangerous. When public health officials must take actions that are invasive and forceful, like quarantine or travel restrictions, they need to be based in real science and implemented transparently, without recycling prejudices against 'risk groups.' In the 1980s, gay activists debated whether to ask city health departments to close bathhouses and sex clubs, while the U.S. Centers for Disease Control warned that they were spots where the risk of transmission was high because people met there for sex. Some gay activists called for the bathhouses to close, to save lives.
But many gay people had the opposite reaction. Amid vitriolic homophobia and stigma around AIDS – people losing their jobs, family members barring gay relatives from their homes, lifetime quarantine for HIV-positive people – shuttering the bathhouses sounded to them like a step down a slippery slope toward concentration camps. Gay communities resisted, and bath houses stayed open. In retrospect, to someone who studies gay politics and HIV, it’s shocking that New York City left its bathhouses open until 1985.”
In his article, "Stop Comparing Coronavirus to Early HIV/AIDS. Just Stop.," King states, “No one cared about people dying of AIDS in the early years of the pandemic. The stock market didn’t budge. The President didn’t hold news conferences. Billions of dollars were not spent. In the early 1980’s, AIDS was killing all the right people. Homosexuals and drug addicts and Black men and women. There is no comparison to a new viral outbreak that might kill people society actually values, like your grandmother and her friends in the nursing home.”
One disturbing similarity is that we see yet again that racism and xenophobia have become attached to a disease.
About the concept of “social distancing” King writes: “social distancing was easier then, because the bodies of your friends were so consumed by dark purple skin lesions they were barely recognizable as human. There were no congressional bills promising them paid sick leave or help with their medical bills. They were kicked out of their apartments and then died in the guest room of whomever had the space and the guts to care for them. Tens of thousands of people died of AIDS-related complications before our government began to address it. Many, many, many of those people spent their last breaths in the center of protests in the streets, begging for justice and relief. Their ashes were dumped on the White House lawn.”
One disturbing similarity is that we see yet again that racism and xenophobia have become attached to a disease. In the early 1980s, soon after cases of Acquired Immunodeficiency Syndrome (AIDS) were first discovered in the United States, the Centers for Disease Control named four groups at “high risk” for the disease: intravenous drug users, homosexuals, hemophiliacs, and Haitians. Haitians became the visible scapegoats for some of the epidemic.
Marhoefer describes in their The Conversation article: “the first reports of infection came from China. As the World Health Organization has pointed out, referring to it as 'Wuhan virus' or 'Chinese coronavirus' could lead people to hide their symptoms and avoid seeking health care. That will increase the risk for everyone. It is also misleading and stigmatizing, since it does not matter where the virus jumped from animals into humans, and the virus is not confined to any one country."
So in 2020, it is the Chinese (or in some instances, any Asian) who are the targets of racist attacks and xenophobia. As was also true in the 1990s, the rhetoric of some key members of the current administration is not helpful.
Dr. Deborah Birx, MD, currently the White House Coronavirus Coordinator who has also been involved in HIV/AIDS research, said on Good Morning America: “In those early days in the 1990s, gay men were the only ones out there fighting for themselves and what they needed. These were the people who were at the greatest risk. They were out there not because it would help them…many of them were already too sick; but it would help those who would come after them.”
That activism has reverberations today, in the work between public health and community health advocates. That’s a difference, not a similarity.
So, yes there is no question that I have been triggered!
I have been triggered by the images of people in masks and hazmat suits. I have been triggered by news about the rapid loss of life; I have been triggered by social and personal devastation being experienced globally.
I have been triggered by the caring reaction and concern expressed by government officials; triggered by the affirming news stories; and triggered by the desire of people to help.
And I have been triggered most by the thought about how if in those early days, if there had been a similarly swift and caring response such as we are now seeing with Corona/COVID-19, if the response had been similar in the early days of the AIDS epidemic — I cannot help but think about all of the lives that might have been saved.
As Doreen Marshall, Ph.D. writes in her article "Taking Care of Your Mental Health in the Face of Uncertainty:" "It is in times like these, that our mental health can suffer. We don’t always know it’s happening. You might feel more on edge than usual, angry, helpless, or sad. You might notice that you are more frustrated with others or want to completely avoid any reminders of what is happening. For those of us who already struggle with our mental wellness, we might feel more depressed or less motivated to carry out our daily activities.
"It’s important to note that we are not helpless in light of current news events. We can always choose our response. If you are struggling, here are some things you can do to take care of your mental health in the face of uncertainty:
- Separate what is in your control from what is not. There are things you can do, and it’s helpful to focus on those. Wash your hands. Remind others to wash theirs. Take your vitamins. Limit your consumption of news (Do you really need to know what is happening on a cruise ship you aren’t on?).
- Do what helps you feel a sense of safety. This will be different for everyone, and it’s important not to compare yourself to others. It’s ok if you’ve decided what makes you feel safe is to limit attendance of large social events, but make sure you separate when you are isolating based on potential for sickness versus isolating because it’s part of depression.
- Get outside in nature–even if you are avoiding crowds. I took a walk yesterday afternoon in my neighborhood with my daughter. The sun was shining, we got our dose of vitamin D, and it felt good to both get some fresh air and quality time together. Exercise also helps both your physical and mental health.
- Challenge yourself to stay in the present. Perhaps your worry is compounding—you are not only thinking about what is currently happening but also projecting into the future. When you find yourself worrying about something that hasn’t happened, gently bring yourself back to the present moment. Notice the sights, sounds, tastes, and other sensory experiences in your immediate moment and name them. Engaging in mindfulness activities is one way to help stay grounded when things feel beyond your control.
- Stay connected and reach out if you need more support. Talk to trusted friends about what you are feeling. If you are feeling particularly anxious or if you are struggling with your mental health, it’s ok to reach out to a mental health professional for support. You don’t have to be alone with your worry and it can be comforting to share what you are experiencing with those trained to help."
People who know better, do better. We owe it to those who didn’t make it, to do what we can now, to end this disease — after all, that’s what friends are for.
Gary Bailey, DHL, MSW, ACSW is the Assistant Dean for Community Engagement and Social Justice in the College of Social Service, Policy and at Simmons University. He is a Professor of Practice at the School of Social Work and the School of Nursing. He is a past Board chair of the AIDS Action Committee-Massachusetts; and was a member of the AIDS Action Advisory Council.