"A Crisis of Our Own Making": Monkeypox, COVID, and Federal Failure

A conversation between Imani Barbarin and Joe Osmundson

Illustration by Kate Gavino

Y’all, I am so excited about publishing this piece. Imani Barbarin, a disability rights and inclusion activist and speaker, and Joe Osmundson, a queer biophysicist and author of Virology— two powerhouses who have been sounding off in person and online about how badly the government has fucked up COVID and monkeypox testing, messaging, and post-diagnostic care.

As someone who has gotten COVID twice and who lives in one of the most dense cities in the world, I too am worried about how much I should be afraid about these two diseases as we lean into the end of the year when the weather gets cooler and the germs get bigger. I knew Imani and Joe would be the best people to take it away on what’s really going on underneath the misinformation, collective fear, and neglect from the top down.

I’m not going to give y’all too much of an intro because the conversation itself is too much of a treat.

Without further ado. Enjoy 🌹

---

So Joe, do you feel comfortable telling us about the call you just had or—

JO: No, this can be on the record. Fuck these people. 

The federal government is trying an untested vaccine strategy to stretch limited doses of monkeypox vaccine  because they are too fucking cheap to move 15 million doses from bags into vials They're using this strategy of using a smaller amount of vaccine in between layers of skin, which is a stronger immune reaction, so you need less vaccine. But the one study this is based on, the small number of people excluded HIV positive folks from this study, doesn't have immunocompromised folks in the mix. 

And so advocates have been trying to strategize. Number one: how do we get the government to get off stats and do the big right thing? And number two, until they do, how do we minimize harm to our community?

North Carolina showed the data: 19% of monkeypox cases in North Carolina have been in white people. Sixty-seven percent of vaccine has gone into white people. So, basically now you're trying a less well tested vaccine strategy, knowing that that's predominantly gonna be on poor people and people of color.

So we've been arguing is everyone should get the same dosing. People should get a full subcutaneous first dose. And then because of limited supply, we can boost with the more experimental dose. Everyone gets the same and everyone has at least that minimal one shot level of protection, if the second dose isn't as good.

We were just on a call with New York City and, um, yeah, we found out that the feds are making this difficult.

Imani, I’ve read many of your works, and you talk about the problem with the idea of “normal” as it relates to viruses and society. Can you speak on that?

IB: Well I think that with monkeypox, their initial reporting was that, it was only queer people and people who are in sexual relationships with queer men are the ones that are highest risk.

The stereotype about disabled people is that we don't have sex, that we don't have relationships, that we aren't in, like, community with one another on a sexual basis. So this implication that most doctors and nurses do not even think that we are even having sexual relationships. It’s confusing messaging regarding queer men.

My conspiracy theory is the reason that they said that is because they were not prepared.

They know that they basically, like, shat all over this because they had 20 million doses that expired. They have a limited test supply. Monkeypox can cause blindness, scarring. It’s a devastating virus. Let's be clear, with COVID, like, we're still not out of the woods to that yet. 

It's really concerning that we [those with disabilities] can't figure out where to get vaccinated. It feels like they're waiting for midterms to be over to do anything and so we're basically politicizing yet another virus that doesn't need to be politicized. And it's frustrating because we have an incompetent CDC director who has basically waved up her hands and gone, well this is what it's gonna be. 

I feel like I am being gaslit every single day. I’m just exhausted for having to constantly advocate for the same thing. We have the greatest healthcare threats to our nation and there's no organized effort for universal healthcare. 

JO: You're not a conspiracy theorist. They've shat the bed. This should have been an easy virus to contain. Not only did they let the 20 million doses expire and did not replace them, but they didn't move vaccine. They didn't move testing in May and June when advocates were specifically asking for it. We felt gaslit. Reporting came out from The New York Times that a few decision makers just didn't think that there were gonna be that many cases and those few people decided not to move vaccines. And because of that, my friends got sick. It is a manufactured scarcity.

You cannot gaslight an infectious disease. You need effective testing, treatment, vaccination, that's it. That's all you can do. You cannot lie about those things. You just have to get people to care that they need. You're a hundred percent right. Our imaginations are so narrow. Like, cis women who have sex with gay men exist. You know, there's so much going on here. So many intersections of identities and access that are just harming people so profoundly.

IB: They're exacerbating the virus effects by calling it, like, this queer STI, right? That reporting is gonna get queer people killed when school opens. Monkeypox has to do with being in close contact for a sustained amount of time. It's alarming on every single level especially for disabled people. Disabled people voted in the Biden administration by a landslide. And I would venture to guess that we were one of the most impactful demographics to vote in Biden based off of his “COVID plan” and taking care of our communities.

Many disabled people have been written out of almost every single stimulus bill and the Infrastructure law doesn't include us almost at all. The disability system is crumbling on top of monkeypox. What happens when our caregivers need weeks to recover from monkeypox? Is nobody thinking that far ahead?

How would you describe our imagination, as Joe put it?

IB: It all really boils down to capitalism. We have to turn a profit at every single turn. Even if you think of people as machinery, as widgets, or whatever, even if you think of us as just numbers and or code or whatever, you need to take time from maintenance. This is a time for maintenance. This is a time for community care, making sure that people have food on their table, making sure that they have vaccines in their arms, and have paid time off to recover from monkeypox or COVID or what have you. And we have basically just thrown all that away and said, well, public health is an individual choice.

Our health is a community project. This idea that you can survive simply on your own does not work. Nobody wants to expand their imagination to community because we are told that we're in competition with one another. So if you get sick, that means a promotion for me. If this person isn't in the workforce then maybe I have a better chance of getting the job. This is a crisis of our own making. It really is. We can blame the government. We can blame the CDC, but they're a reflection of us as a society. When I ask you to expand your imagination to include disabled people, they actively resist it like, well, disabled people don't contribute much to society. Excuse me, fuck you. 

We've been sounding the alarm on this for years, that how you are treated once you are no longer useful is how you're gonna be treated during this virus. And if you decide to take it seriously, you are functionally disabled to the rest of the society because you are taking yourself out of it. But if we all banded together in some capacity to fight these viruses and to hold our government accountable, then we would not be in this predicament over and over and over again. And it's only gonna get worse because the anti vax movement has a head start. Polio is back!

JO: I think about this a lot and I talk about it in my book. A lot of this attitude about sickness and wellness is a denial based in white American puritanism. Sickness is a fact of life. If you look at your life as a line, every life will contain sickness in it. This desire for normalcy that Imani talks about so brilliantly is really a harm to oneself and a denial of the stated fact that you will get sick and die. 

I think so much of American culture, consumerism, and capitalism is about not accepting that and using every opportunity along the lines to deny that. Life is not an island and it can never be. You will need care at some point. There’s something wrong with our culture that does not acknowledge that all people deserve care. 

IB: These virus related disabilities are not just disabling us for our first time. They're further disabling us, and further putting us under the threat of institutionalization and conservatorships, and having our rights stripped away. People don't realize just how close they are to that. We try to remind them all throughout the pandemic, all throughout COVID, all throughout all of this, that they're literally one step away from all of this. We're seeing more conversations about maybe we should [put] people back [in] homes, maybe we should reinvigorate the big psychiatric facilities. And it's very frightening, especially with all these viruses floating around. 

How do we fight against media disinformation about these viruses?

IB: I think when there's an institutional authority putting out misinformation, that's a big problem. I've seen so many infectious disease doctors and regular nurses and doctors on social media trying to dispel misinformation that the CDC is putting out! When an institutional authority co-signs disinformation, it puts people on the wrong path. I think that there's a lot of people trying to dispel this information, but there is a big elephant in the room, which is that our very own government is the biggest hurdle in getting people the correct information. And because we are looking at incompetence and neglect of marginalized communities, people won't take it seriously ‘cause they don't think it's gonna be them. That information early on has already set us back. 

My biggest nightmare is that monkeypox and the COVID somehow conjoin in some way and we’re in for a superbug.

JO: I can answer that one. It’s extremely unlikely. They're a different family of viruses. We’ve actually had four or five co-infections of COVID and monkeypox and it is not a pleasant experience.

How do we take care of each other in the midst of governmental failure?

IB: Well, listen, I've been known to harass a politician or two. We need to really invest in home and community based services. The disability community has been fighting for home and community based services. Early in the pandemic, about one third of all COVID deaths happened in nursing homes and long-term care facilities. And so disabled people badly need to stay in the community in separate areas where the likelihood of viruses running through our community is lessened. We have never fully funded home and community based services. We have been begging for it since the seventies, if you can believe it.

That is one of those domino effects type of support systems that would really enrich everyone because the people most likely to be aides and direct support workers for disabled people are Black and brown people. If we raise the wages for home and community based services, we're raising the ability to live for a lot of different communities. Whenever people think that disability is not an intersectional issue, it literally touches every single part of our society. Every single part.

JO: Infectious diseases and viruses do not create ruptures in society. They only shed light on ones that already exist. We need to fight for universal healthcare. We don't have to acquiesce to being in a declining empire and late capitalism as the globe warms. We can insist on having nice things and on taking money from rich people to fund those nice things. 

The ability to get people in [the] home care that they need, the ability to have healthcare helps all people. I see a lot of that happening right now with mutual care of people who are sick. Monkeypox is a horrific infection. It could make you isolate  you isolate for over a month sometimes as your skin erupts in new pustules that hurt. And if you have pustules or lesions in your mouth or in your rectum, the whole tissue gets inflamed. We haven't left them to defend for themselves because we're calling them every day, dropping off food, making sure that they have access to care that they need. We are crowdsourcing where to send someone who's uninsured in New York City to make sure that they can get free care. 

The mental health ramifications of this infection are known and they are huge. The stigma dealing with the pain, it's like a post traumatic stress response. I think really considering and thinking about aftercare and building mental health, financial support, practical care, and aftercare into every single case of monkeypox is going to be essential.

Imani Barbarin’s Recommended Reading List

• The Cancer Journals by Audre Lorde

• A Disability History of the United States by Kim E. Nielsen

• Feminist, Queer, Crip by Alison Kafer

• Disability Visibility: First-Person Stories from the Twenty-First Century, edited by Alice Wong 

Joe Osmundson’s Recommended Reading List

• The Cancer Journals by Audre Lorde

• José Esteban Muñoz

• Dorothy Roberts

• Body and Soul: The Black Panther Party and the Fight Against Medical Discrimination by Alondra Nelson

This interview has been edited and condensed for clarity.