Victoria Noe

The past five weeks have been chaotic, which was by design. The new administration warned us of their ‘shock and awe’ strategy, and they delivered. Some of what they have been doing was anticipated. But some of it has gone beyond even what was defined by Project 2025. The chaos has left everyone I know confused, frustrated, frightened and angry. Once again, I return to the minister giving the eulogy at Alex’s funeral at the beginning of The Big Chill: “I’m angry. And I don’t know what to do with my anger.”

So many people I know, once they got past the ‘shock’ part of ‘shock and awe’, wondered where to begin with a response. Some people were ready to march in the streets, and did. Many people - a lot of them for the first time - called their members of Congress. It’s no surprise that the Congressional switchboard, normally receiving  forty calls a minute, was now struggling to handle 1,600 a minute.

In Facebook groups, in person, in online gatherings, people have been coming together to figure out not only how to respond and try to stop further damage, but to protect the most vulnerable people in the US and around the world, whose very lives have been threatened by capricious decisions.

My focus has been primarily the HIV and AIDS community. That’s not an easily defined cause. People living with HIV and AIDS, and those at most at risk, are likely dealing with other issues, too. They often struggle to find and keep stable housing, affordable medications, and access to healthcare. They face stigma, racism, homophobia, and misogyny. It’s all connected.

The enormity of the chaos can easily overwhelm us. It’s so much at once. But realizing that overwhelming us is part of the strategy just made me more determined to do something.

As a writer and ally and long-term HIV-negative survivor, I have a voice that I’m using as often as I can. I share information online - on my social media pages and in groups. I call my members of Congress, but even though they’re all Democrats, I don’t feel I can depend on any of them to oppose what’s going on 100% of the time. That sudden lack of trust is a terrible feeling, but a pretty universal one at this point.

As a human being, I’m reaching out to others in the community every day, checking on their well-being and mental health. A community whose resilience is legendary is being tested yet again: first HIV, then COVID, now this, too? Some are, frankly, too tired for another fight. I get that. But others are energized.

Back in what I call ‘the dark old days’ of AIDS, in the 1980s, one of ACT UP’s most powerful messages was born: Silence=Death. It applied then - and now - in many ways:

• The then-president, Ronald Reagan, did not say ‘AIDS’ in public until 1987, six years into the epidemic, after over 10,000 Americans had died.

• Newspaper obituaries of people who died from AIDS routinely listed the cause of death as "a long illness” and referred to same-sex partners as “long-time companions”.

• The new Secretary of HHS, Robert F. Kennedy, Jr., does not believe that HIV necessarily causes AIDS, despite decades of research.

• The federal government has erased all mentions (current and historical) of the LGBTQ community, and in some cases women, too, from their department websites.

• Medical research, including clinical trials around the world, has been canceled, often while patients are being treated, endangering their health and destroying the work already completed, as well as that in the planning stages.

• Funding to organizations that are LGBTQ or HIV and AIDS focused, and to those who include those populations in their constituencies, has been frozen or rescinded.

And that’s not to mention the assaults on same-sex marriage and reproductive rights, as well as DEI programs across the government and, sadly, the private sector as well.

That’s a lot of ignoring, a lot of dismissing, to literally erase Americans. 

What, then, can one person do?

As I told a friend last week, we can’t match the ‘shock and awe’. We have to use different strategies, including the ones that served the HIV and AIDS community so well when it felt like there was no hope. And the number one strategy has to be keeping the community in the public eye. COVID rendered HIV and AIDS largely out of sight, out of mind, but it didn’t disappear. 

It’s also a good time to remember that back then, when people were dying and there was no hope of survival, activism began not in a boardroom, but at kitchen tables and community centers. It was a grassroots movement that changed the world.

Now is the time to get loud, to put HIV and AIDS out there. Whether it’s the decimation of PEPFAR or the destruction of clinical trials around the country, talk about it. Whether it’s the loss of health insurance by people living with HIV whose jobs were eliminated or the loss of funding for testing and prevention efforts aimed at the most vulnerable communities, talk about it. Is talking enough? No, but it’s a good place to start.

So much is going on these days, it’s easy to be overwhelmed on an hourly basis. There were certainly times for me back in the late 80s/early 90s when I despaired that my constant efforts to raise money weren’t making even a tiny dent in the need. I kept going anyway, because I was angry like that minister in The Big Chill. People questioned why I was involved at all in something that was ‘not about you’. That just added to the anger. 

But I also knew something else: I did not want to look back and know I did nothing. I feel the same way now. Maybe I’m just too stubborn to keep my mouth shut. 

I found a way to channel that anger then, and I’m doing it all over again.

You can, too.