'Out of Flames and Fear': How People With HIV Forced California to Reform HIV Care in Prisons

Brian Carmichael
Brian Carmichael, one of the imprisoned leaders of a campaign to change prison health care in California.
Brian Carmichael.

"Imagine a prison, one single prison, where hundreds and hundreds of inmates died." That's how Brian Carmichael describes the California Medical Facility in Vacaville during the late 1980s and early 1990s.

Carmichael's education around HIV and AIDS began in 1987 at California's Folsom Prison. It started when Carmichael's friend Rick received a visit from his wife, who told him to get tested for HIV. Rick did and, when his test came back positive, Carmichael recalls, "guards came onto the yard in HAZMAT suits, handcuffed him and took him to R&R (Receiving and Release) where he was transferred to CMF-Vacaville [the California Medical Facility]." There, he was placed in a segregated unit for people with HIV.

Less than a day after Rick's transfer, prison guards returned to his cell in Folsom and ordered the other men to remove all of his belongings from it. The men refused and, says Carmichael, were ordered again, this time at gunpoint. The men dragged Rick's possessions -- his mattress, his clothing, his photos and everything else -- to the yard in front of the cellblock. Then, using the gasoline from a prison lawnmower, the guards set everything alight.

"Everyone ran," recounts Carmichael. "Not from the flames, but from the fear that now AIDS was floating in the smoke and air."

Out of the flames and fear, Carmichael, then in his early 20s, became an HIV activist and educator. He says he was "determined to learn everything I could about HIV/AIDS and keep it from killing me or any more of my friends."

Segregated HIV/AIDS Unit: "Death Row"

Two years later, in October 1989, Carmichael was transferred to Vacaville for a psychiatric evaluation. There, he walked by the segregated HIV/AIDS unit every day. "Most of the guards referred to these units as 'Death Row' or worse," he says. Those in the unit were not allowed to work, which meant that they were unable to earn work credits to reduce their prison sentences. They were not allowed to go to the yard or mess hall. Instead, their few activities were limited to that unit or a small fenced-in area just outside it. The prison had one dedicated HIV physician, German Maisonet, M.D., whom Carmichael describes as "an absolute hero." But Maisonet was both overworked and frustrated that prison administrators ignored his warnings and efforts to develop a five-year plan to address HIV in the prison system.

The inaction led to deaths -- and many of them. "These weren't peaceful, dignified deaths," Carmichael points out. "They were horrible, agonizing and torturous deaths. People screaming in pain, begging for attention, often locked alone in punishment cells -- or even those 'fortunate' enough to be in the prison infirmary, they were verbally abused, ignored and isolated, dying in fear."

Seeing the treatment of Rick and others isolated in the HIV unit dissuaded many, including Carmichael, from even getting tested. "I'm afraid to test!" Carmichael remembers telling a reporter from Bay Area radio station KPFA . "I see how all these other guys are doing the socially responsible thing and getting tested, and then they get punished and start losing privileges, visits, jobs that reduce your prison sentence. So, I'm not sure if I'm HIV-positive or not." Carmichael was not alone in his fears; many others, both in California and prisons across the nation, were hesitant to get tested and be subjected to similar punitive measures.

Round-the-Clock Vigils

But, Carmichael wasn't afraid to help those with HIV and AIDS. Father Patrick Leslie, the prison's Catholic chaplain, had recently implemented Pastoral Care Services (PCS), which trained people to visit sick and dying people in the prison's hospital and HIV segregation units. Carmichael and Laos Schuman, whom Carmichael had met on his first day behind bars in 1983, signed up. "We wanted to make sure that no one else there died alone in a cell, begging for help, attention, comfort … just company," he recalls. The work wasn't easy; when a person neared death, Carmichael, Schuman and other PCS volunteers signed up for round-the-clock vigils. "We would sit in shifts, 24 hours a day, and never leave their side until the next guy showed up."

Both then and now, prisons across the nation routinely stop all activity several times a day for "the count," a process through which each and every incarcerated person is counted to ensure that no one has escaped. The count typically requires that every person be in their housing unit or cell, but in Vacaville, prison staff allowed PCS volunteers to be counted in the hospital room so that they did not have to leave a dying man alone, even for an hour. They weren't the only ones to join. Among the other volunteers were Charles Perry, whom Carmichael describes as a "big, violent, tough guy," who was living with AIDS himself, and Peter Yvanovitch, who played both chess and piano.

The AIDS Quilt Goes to Prison

Bringing comfort to those dying of AIDS wasn't their only aim. Once Carmichael, Schuman, Perry and Yvanovitch saw the conditions inside the segregation units and the treatment meted out to those with HIV, they wanted to expose these conditions. The four began writing to reporters, politicians and attorneys. They reached out to the NAMES Project and asked whether the AIDS Quilt could be brought to Vacaville. The Project agreed, marking the first time the AIDS Quilt was brought inside a prison. The men at Vacaville, meanwhile, decided to make their own panel to commemorate those who had died inside the prison. Instead of making several 6-by-3 foot panels, the men made one 12-by-12-foot panel listing the names of 96 men who had died from AIDS-related complications at Vacaville. Carmichael notes that, from their own records along with those of Maisonet and Father Leslie, they knew that more than 200 people had died, but in the end, they were only allowed to sew in 96 names. "Still, try to imagine that," he challenges, "200 or even 96 guys dying in one prison." (In contrast, between 2001 and 2012, California's 33 prisons altogether had 114 AIDS-related deaths.)

In February 1992, the AIDS Quilt arrived at Vacaville. But, prison security took precedence, and the quilt was searched, panel by panel. Carmichael recalls that drug-sniffing dogs walked across the panels checking for drugs. For Carmichael, the blatant disrespect was symptomatic of the entire prison culture towards HIV and AIDS. "That's what we were up against, every day, trying to get access to the segregation units, hospitals, etc.," he reflects. But, despite this, Carmichael remembers that the display was a huge success. Hundreds of people came through the chapel to view the dozens of panels exhibited. "Everyone was crying, and it was another life-altering event for a lot of us," he says. At that event, Maisonet also dropped a media bombshell: He was resigning in protest of the prison's continued disregard for the well-being and care of people with HIV and AIDS.

Refusing Food and Medication to Demand Better Treatment and Hospice Care

Carmichael says that from that event emerged plans for a hunger strike to demand not only better HIV treatment, but also the establishment of a prison hospice. The inside activists met with activists from ACT UP and formulated a plan. ACT UP agreed to press local media to pay attention to the deteriorating conditions inside Vacaville, send out press releases and helped build support for the men's actions inside. Meanwhile, Carmichael wrote to reporters, lawyers and politicians whose addresses he could get his hands on, sending information and documentation about conditions inside the prison. When the Senate Rules Committee held its required hearing to confirm a new Vacaville warden, ACT UP marched in protest in Sacramento.

Three months later, Vacaville had four deaths from AIDS-related complications. On September 19, 1992, people inside Vacaville began refusing their medications, effectively launching a medication strike. Carmichaels says strikers included not only the 275 people on the HIV unit, but also dozens of lifers, drag queens and psych patients. "That first day, it was incredible," he recalls. "More than half of the prisoners who took ANY medication in the prison refused." Given that Vacaville was a medical facility, that meant that at least half of the 3,000 people were participating. They demanded an outside investigation into both the deaths and the medical and custodial staff who were assigned to care for the men when they died. They also demanded a legislative review of the prison's compassionate release policies and practices, a meeting with the director of the California Department of Corrections, and the establishment of a hospice inside Vacaville.

The medication strike lasted for over a month, though some participants tapered off when their medication refusal began severely impacting their health. Even after the first ten days, over 100 people were still refusing their medications.

Five weeks later, when none of these demands were met and a fifth person, Ricardo Rodriguez, who had participated in the strike, was found dead in his cell after his calls for help had gone unanswered, Carmichael and Charles Perry decided to increase the pressure. With the help of ACT UP, they invited media to interview them on Wednesday, October 21. Prison administrators were bombarded with phone calls from media asking to interview the two men. Carmichael recalls prison guards grabbing him that morning and questioning him about the calls from reporters to attend the "inmates' news conference" that day.

Surprisingly, prison administrators allowed the reporters into the prison, where Carmichael and others handed out a typed statement announcing that Perry and Carmichael were embarking on a hunger strike until their demands were met. Their statement grabbed the media's attention, which began covering not only the strike, but also medical care and conditions inside the prison.

Retaliation was swift. Carmichael recalls frequent cell searches, in which his and others' belongings were tossed around and sometimes stomped on or literally torn apart. He says they were stopped and searched any time they went to their work assignments or to recreation or moved through the prison. Once, Carmichael was carrying a stack of copies of a recent article about the strike as well as an ACT UP decal. As reported in the book, Criminal Injustice: Confronting the Prison Crisis, he was handcuffed, locked in a holding cell and charged with being part of a prison gang called ACT UP. Fortunately, men who were passing by on their way to rec witnessed what happened and told Schuman and Yvanovitch, who contacted both ACT UP and the media. Within minutes, a reporter called the prison and asked whether Carmichael had been handcuffed and locked in a cage as retaliation for speaking with the media. "The lieutenant screamed and slammed the phone when he was done," Carmichael recalls, but he then told the sergeant to let Carmichael out.

The following week the prison announced that it would begin force-feeding anyone who refused to eat for ten straight days. In response, Carmichael and Perry began eating, but ten other men took their place for the next five days. At the end of those five days, another ten men took their place, instituting a rolling hunger strike that circumvented the threat of force feeding. That same week, ACT UP in San Francisco called a 24-hour vigil at the State Building and at Harvey Milk Plaza to draw attention to and demonstrate its support for the hunger and medication strikes. In December, it rallied approximately 100 protesters to picket and hold a die-in outside the prison.

On November 12, 1992, the front page of the Daily Republic announced "Inmates’ Demands Met," reporting that the three-week hunger strike had ended and that all of the men's demands had been met. The California Department of Corrections had announced that it would be building a hospice with $5.8 million appropriated by the state legislature. Three months later, in 1993, the prison opened a 17-bed, state-licensed hospice, the first one inside any U.S. prison.

In addition, Assembly member John Burton ordered the Committee of Public Safety to investigate the prison's HIV-related care. The ensuing report noted a lack of adequate HIV care, extreme prejudice among medical staff and the lack of medical staff trained in HIV. The legislature gave the prison 90 days to improve these conditions.

Compassionate Release

Although they had won their demands, contemporary news reports say the organizers again faced retaliation: Charles Perry, who was in the last stages of AIDS, had applied for compassionate release, which would allow him an early release from prison to spend his final days at home. But, prison administrators issued him a write-up for disruptive behavior and threatened not to process his compassionate release application so long as he spoke with the press. Carmichael was charged with conspiracy to assault an officer and placed in isolation. ACT UP advocates intervened on their behalf, contacting media which reported the retaliation and pressuring prison administrators. The charges against him were dropped, but not before he had missed a week of previously scheduled media interviews.

In 1993, Perry was granted compassionate release; he was released in 1993 and returned home where he died with his mother at his side. That same year, Carmichael finished his ten-year sentence and was released from Vacaville. He moved to New York in 2001 and continued HIV education and advocacy, first with Positive Health Project and Prisoners for AIDS Counseling and Education (PACE) and now with Know the Risks (KTR), organizations through which he has counseled thousands of people behind bars. Yvanovitch was eventually moved to the new prison hospice for which he had fought so hard; he died there. Schuman was transferred to another prison and, Carmichael says, because of sustained pressure from ACT UP, Burton's office and other outside supporters, he was not subject to further retaliation.

Looking back 25 years later, Carmichael says, "I don't regret anything we did there or all the trouble it caused us. My time at Vacaville showed me what one person, or a small group, can do."

True Heroes

Though this article centers on Carmichael's acts and experiences, he wants readers to know that these protests and victories were because of a group of people, not just him. This group included Laos Schuman, Charles Perry and Peter Yvonovitch, as well as Dr. German Maisonet, who went on to run an AIDS unit in a federal prison; Father Patrick Leslie; Assembly Member John Burton; Judy Greenspan; Jim Lewis; and numerous activists in Northern California.

He says, "They were the true heroes of the hospice movement and fought for those guys living and dying in the HIV/AIDS segregation cellblocks when no one wanted anything to do with them."

He also wants readers to know that many HIV-positive people within the prison also supported and encouraged their efforts and, in many cases, participated in the strikes and actions. "I might have been the face of the movement and a leader, but lots of guys fought alongside us, or we'd never have accomplished anything. We'd have been squashed like bugs."

Carmichael says that several years ago, his nephew, who is imprisoned and has non-HIV-related medical issues, was transferred to Vacaville and came across his uncle’s legacy:

"He was amazed at the medical services and all the programs they had for people with HIV. He told me he went down to the chapel and was hearing about the Pastoral Case Services program and stories about how 'back in the day' prisoners at Vacaville had banded together, protested, organized, went on hunger strike, and fought to change the system. Then, looking at the scrapbook and all these old newspaper articles on a corkboard on the wall, he shouts, 'Hey, that's my Uncle Brian!' and all the old stories came back to him, hearing about all the stuff I was doing 20 years earlier..."

"There's still a lot of work to do and the fight to end the criminalization of HIV is more important than ever, but it can't be denied that things are so much better now than 25 years ago," Carmichael concluded. "And I am proud, honored and humbled that I played a small part in it, with all those other people I've told you about. We did good."