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HIV Prison Activists Are Leading A Freedom Movement

Above photo: A sign pleading for help hangs in a window at the Cook County Jail complex on April 9, 2020, in Chicago, Illinois. Scott Olson/Getty Images.

When AIDS hit prisons and jails in the 1980s, incarcerated people organized. They developed peer education programs to counter stigma and slow transmission, established buddy programs to provide mutual support, led hunger and medication strikes to challenge medical neglect, and worked with outside supporters to file class-action lawsuits and to win compassionate release. The Prisoner Education Project on AIDS and AIDS Counseling and Education in New York state prisons, and similar projects in federal lockup became the best known among hundreds of efforts behind bars.

Rusti Miller-Hill, a formerly incarcerated woman living with HIV, said of her emergence as an HIV activist in jail: “I needed to live, and that was my way of fighting.” Sparked by shared experiences of illness and grief, HIV prison organizing has brought together people who are queer and straight, trans and cis, Black, Latinx, Indigenous, Asian and white. This organizing has also faced repression. Administrators view solidarity among people in prison as undermining guards’ control, and tend to see discussions of HIV prevention and care as a challenge to prohibitions against sex and drug use behind bars. Nonetheless, work by and for people living with HIV to address the epidemic in prisons, jails and detention centers continues to the present day. Formerly incarcerated people have built and maintained lifelines for their loved ones through inside-outside newsletters such as Prison Health News and organizing projects such as Philadelphia’s TEACH Outside. They have worked on the frontlines of movements for decarceration and against policing and surveillance, as through the Sero Project’s HIV is Not a Crime, the Positive Women’s Network–USA’s platform for Ending Criminalization, and Women With A Vision’s three decades of work to Center Black Women in Criminal Justice Reform.

Due to massive deficits in health care and testing, we will never know the full extent of HIV behind bars, historically or today. But it is indisputable that incarcerated people have saved lives, and that they have fought against the criminalization of their communities with the unflinching support of loved ones who have followed their leadership and fought by their sides.

Today, incarcerated people are struggling to confront COVID-19, and with each passing day it becomes more urgently necessary to release people from prisons, jails and detention centers. Many of the very same people who initiated organizing against HIV in prisons during the 1980s and 1990s stand on the front lines in this moment. We must follow the leadership of incarcerated and formerly incarcerated people, who — drawing on expertise honed in responding to HIV behind bars — are issuing the demand to #FreeThemAll4PublicHealth.

Laura Whitehorn, of Release Aging People in Prison (RAPP), is a former political prisoner and HIV activist who helped to lead AIDS peer education in federal prisons and jails three decades ago. As she explained on a March 30, 2020, public conference call about COVID-19 in prison that was organized by Critical Resistance, “Public health criteria should determine release, not criminal justice criteria.” Social distancing is a critical tool to fight COVID-19, but incarceration ensures the opposite: “There is no way that jails and prisons can protect people, treat people, keep people alive, keep people from acquiring this virus. It’s the opposite. Prisons and jails are a petri dish for how to spread this virus.”

Yet public health criteria are not determining the responses of governments to COVID-19 behind bars. As the call to #FreeThemAll4PublicHealth grows nationally, most politicians and pundits are still following bias, not science, and are therefore severely limiting eligibility for release. Attorney General William Barr has been widely critiqued for his instructions to the Bureau of Prisons, which rely on a “risk assessment” algorithm called PATTERN that has never been used before and has been shown to reinforce the racial biases that plague our criminal legal system. At the federal and state levels, hard lines are being drawn for release between “nonviolent drug offenders” and everyone else, although we have long known that even the mass release of people convicted of nonviolent drug offenses would not make a significant dent in mass incarceration. In New York City, Governor Andrew Cuomo is now trying to roll back the comprehensive bail reform that went into effect at the start of 2020, largely in response to a law enforcement-driven and fearmongering campaign.

These sorts of exclusions arbitrarily divide and categorize our incarcerated family in ways that are undoing victories we have already won and will make it much more difficult to get people out going forward. Activists have long refused to let the HIV community be sliced and diced along the axes of innocence and guilt, and they have insisted on a unified community, across prison walls, of people with AIDS. The call from currently incarcerated people, formerly incarcerated people, and their families to #FreeThemAll4PublicHealth grows from this same “all of us or none” spirit. As Andrea James, founder of the National Council of Currently and Formerly Incarcerated Women and Girls, emphasized on a March 13, 2020, public webinar organized by The Justice Collaborative, global health recommendations “should not be parsed out or carved out when it comes to incarcerated people. They are ALL part of our community.… We need to be working from a framework that starts with release, not hand sanitizer.”

This call underlines another point that incarcerated people, formerly incarcerated people, and their families have been arguing for decades: prisons have never provided adequate health care; rather, incarceration is a public health crisis.

HIV prison activists have organized to demand compassionate release for all people with serious health issues behind bars, to sue prison health care corporations, and to fight systemic abuse and neglect. Across the 1990s, a broad coalition of California activists organized to support — and then to implement the settlement that followed — the class-action lawsuit Shumate v. Wilson, which charged the state’s prisons with administering cruel and unusual punishment and exhibiting “deliberate indifference” to the health of incarcerated people.

Knowing prison health systems could never monitor themselves, HIV prison activists further organized ongoing watchdog efforts. In the early 2000s, the formerly incarcerated leaders of an ACT UP Philadelphia-led citywide coalition set up their own independent monitoring of medical neglect in the city’s jails by doing outreach to family members who were visiting loved ones. Whatever health issues were unfolding inside, activists knew that families would hear them first, and that these individual stories could be amplified through the coalition’s ongoing work to fight for healing justice.

Women have been on the front line of this organizing, centering gender as a lens into the ways prisons and communities are connected. The activists who founded AIDS Counseling and Education also crafted a reentry program, ACE-OUT, which continued AIDS peer education among formerly incarcerated women returning to their children, partners and communities. Formerly incarcerated women such as Mary Lucey played leading roles in developing agendas to address incarceration through ACT UP. These efforts bolstered demands for compassionate release, such as at the Central California Women’s Facility, where incarcerated people living with HIV provided testimony of gross negligence in care in the early 1990s. They also helped to fuel the 1989 through 1993 campaign to push the CDC to expand the definition of AIDS to include diseases with greater occurrence in women.

These organizing histories further teach us to look beyond individualized modes of viral transmission to a racial justice framework. The same circumstances in which people are criminalized — circumstances of poverty, racism, state and interpersonal violence, and low access to health care — facilitate HIV disease. As Celeste Watkins-Hayes puts it, HIV is an “injury of inequality.” In 2006 this analysis drove formerly incarcerated HIV activists and their accomplices to launch Project UNSHACKLE (Uniting a Network on Sentencing and HIV/AIDS with Community Knowledge Leading our Efforts). With organizing efforts reaching from New Orleans to Chicago to Philadelphia, this coalition worked to build a nationally powerful and locally rooted movement to challenge mass criminalization as a structural driver of the HIV epidemic in the United States. The ongoing HIV crisis in Black and Latinx communities, especially among Black gay and bisexual men in the South, reflects inadequacies in Medicaid expansion, preventative care and access to PrEP (Pre-Exposure Prophylaxis). Prisons, jails, detention centers and predatory policing magnify these problems under a heat lamp. That is why organizers have insisted that prisons and policing are themselves a pandemic. The single most important step that can be taken to challenge the intersection of infectious illness and prisons is to decarcerate our communities and our world.

Like HIV, COVID-19 is inseparable from inequality, and its spread is exacerbated by stigma and misinformation. In the early years of the AIDS epidemic, people in prison organized with loved ones on the outside to gain information and some control over the means of protecting their health. They fought stigma rooted in homophobia, transphobia and sexism, and countered misinformation with analyses of the structural injustices driving HIV. They advocated for LGBTQ people, injection drug users and women living with HIV, while showing that most incarcerated people living with HIV became infected outside of prison rather than inside it. But as deadly as HIV has been behind bars, incarcerated people have much less time to survive the fast-moving COVID-19, and organizers are acting accordingly. Women in detention centers are using “video visitation” software to disseminate their concerns about the spread of COVID-19, allies have established a COVID-19 detention hotline, and people across lockups are putting stopgap prevention measures into place, like using clean socks over the shared phones on housing blocks. Nevertheless, the highly communicable nature of COVID-19 makes prisons, jails and detention centers deadly for the people confined within them. And the rapidly expanding role of the police in enforcing shelter-in-place orders and curfews should raise alarm, rather than be normalized as a public health strategy.

This is why organizers in prisons, jails and detention, along with their allies, are uncompromising in their demand to #FreeThemAll4PublicHealth. Mass criminalization fragments the very networks and ties that are now most needed to keep all of our community members safe. HIV prison activists knew this decades ago, and those organizing against COVID-19 walk strongly in their legacy. There is no version of this crisis that gets better by pouring more money into jails, prisons and detention centers.

As expressed in a public letter to congressional leaders by hundreds of incarcerated and formerly incarcerated people and their organizations: “The COVID-19 pandemic has exposed deep systemic inequities.… Now is the time to disinvest from the criminal legal system and invest in permanent public health infrastructure that includes healing, housing, healthcare, treatment including comprehensive harm reduction services, and community-led economic development projects as a step toward healing and justice.”

Nationally, we are bearing witness to the proliferation of mutual aid efforts, as neighbors band together to ensure that they have plans in place for caring for one another and the most vulnerable among them. Mutual aid is a method for building new social relationships that are more survivable than those that structure the world we currently live in. The earliest peer education efforts of incarcerated HIV activists are evidence of this project. And the long history of prison activism shows us that the relationships forged through mutual aid are the foundation through which we decarcerate our communities.

Now is a time to get local, to educate one another, to dream big, and to take consistent and deliberate action and demand that public health criteria guide releases. Together, we can not only stop the flow of people into jails, prisons and detention centers, but we can bring and keep our loved ones home. At every step, the voices of currently incarcerated people, formerly incarcerated people and their families must be heard and must lead our efforts.

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