In the early years of the HIV/AIDS epidemic, fear and paranoia reigned. The virus, which was first reported in the U.S. in 1981, ravaged vulnerable communities, and health care workers caring for people with HIV/AIDS faced a backlash from family and community members who didn't understand how the virus was spreading.
In his podcast, "Blindspot: The Plague in the Shadows," host Kai Wright revisits those early years, focusing in particular on populations that are frequently overlooked.
"The people who have been most affected [by the AIDS crisis] are often also the people who have been most undocumented in the storytelling and least talked about," he says. "And so we wanted to go back, we wanted to tell some of the stories that came out of those communities."
"Blindspot" goes inside a pediatric ward in Harlem, a drug market in the South Bronx and a woman's prison in upstate New York, offering what Wright calls a "a road map of our social inequities and our bigotries" — as well as a commentary on "political and economic choices about who is expendable."
Wright notes that health care workers who cared for patients with HIV/AIDS did so at great personal cost: "They were not considered heroes at the time. They were considered pariahs."
But, he adds, "No matter where you enter into this history, you find these incredible human beings who did above and beyond, who led with love, to take care of other human beings when institutions were failing. The pediatric ward of Harlem Hospital is exhibit A of that."
Interview highlights
On the health workers at Harlem Hospital who cared for pediatric patients with HIV/AIDS
This is a place where we had seen enormous public divestment from that hospital and from that neighborhood, period, since the fiscal crisis in New York City in the '70s through to when the epidemic emerged. At the time when they were caring for these children, they had very few resources. The stigma was out of control. People did not want to have anything to do with people with AIDS, including these kids. And the nurses and doctors on that ward used their own money, their own time, to literally create a home for kids [with HIV]. ...
They were not considered essential workers. ... They did this work without any of the applause. That's another thing that has just been so clear as we've reported, this is just the wounds are fresh, still, 40 years later.
On children with HIV being separated from their parents
The reality of the epidemic amongst children with HIV is they're people who are being born with it, and they're being born with it because, in many cases, their mothers were injection drug users or had sexual relationships with injection drug users, and were HIV positive. They were poor women of color. And this was the height of the crack epidemic, we have to remember. And those infants were being born with HIV, were being separated from their parents, and were living and dying their whole lives on hospital wards. And Harlem Hospital is one place where that was happening, more so than anywhere else in the country.
On federal programs that eventually came through for people with HIV/AIDS
One of those really important pieces of policy is the Ryan White CARE Act that's passed in 1990, and it remains a really important part of the American response to HIV. It funds care and treatment for poor people, essentially. And it is notable that that law is named after Ryan White, a 13 year old boy who who got HIV through a blood transfusion, and he is really the epitome of innocence in this epidemic, right? He is the person that people can say, ... "You didn't do anything to bring this on yourself." And that framework from '87 forward – I would argue we're still struggling with it today – the idea that, OK, we can start to respond to this [health crisis], but only for the people who didn't deserve it — for these drug users, for these promiscuous gay men, for people who brought this on themselves, for the mothers of those children at Harlem Hospital — they are considered vectors of disease as opposed to victims.
On how the war on drugs led to more people dying from HIV/AIDS
One of the things that I think people don't wrap their heads around is there's a part of this epidemic that didn't need to happen at all. The drug war is directly responsible for the epidemic amongst injection drug users. At one point, half of all the injection drug users in New York City were HIV positive. That is a direct consequence of the fact that, during the '70s, there was a shift to saying, "OK, we're going to have a policing response to the heroin crisis." And we, in a number of states, including New York, outlawed the possession of syringes. ... And what that led to was the creation of shooting galleries. ... And so people would get together and share the same needle in these shooting galleries. And it became one of the most efficient ways that HIV spread on this planet was in those shooting galleries. And it led to those kind of alarming numbers. That is the drug war and the choices we made about how to deal with drugs directly causing huge amounts of death.
And then when public health started to come up with the idea of ... syringe exchange, which is something we have now, it took so long for that to actually become legal. ... There are particular lessons like that where our bigotries, our punitive attitude towards people who are in need have caused disease in this country. And HIV is, sadly [an] excellent example for us to look at, to see that process.
On some Black funeral homes refusing to bury people who died of AIDS-related illnesses
The stigma was significant enough that funeral homes refused to bury people. ... There became a whole genre of queer activism in particular that is the AIDS funeral, because people would have to come up with their own ways to celebrate people who had been lost, because if churches would bury someone at all, they would erase everything about that person's life that they found shameful. They would erase the fact that they were queer. They would erase the fact that they had HIV. They would say they died of cancer. They would say they died of tuberculosis, of things other than HIV, and so then in the act of burying them, dehumanize them. And that was a profound and real part of what was happening, not only in the Black community, but certainly in the Black community.
Amy Salit and Susan Nyakundi produced and edited this interview for broadcast. Bridget Bentz, Molly Seavy-Nesper and Carmel Wroth adapted it for the web.
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