Living with HIV in prison, Lisa Brelsford feels isolated. "It can go to the extreme of they don't want to be your roommate, sit next to you, be close to you, talk to you," she says. "They don't want accidental spit to get on them or in the air."
But Brelsford is not really alone: she's targeted by stigma. Stigma is prejudice -- people make assumptions or judge you. Imprisonment can bring stigma. So can being a person of color; poor or lowincome; lesbian, gay, bisexual or transgender (LGBT); a drug user; or a sex worker; or living with mental illness. And due to prejudice, people from these groups are more likely to be sentenced to prison.
So when Lisa Brelsford's counselor told her, incorrectly, that her spit could give someone HIV, it wasn't the first time she'd heard this myth. She was already serving time in Connecticut for an assault count she says was up-charged due to the irrational fear of her saliva. Lack of knowledge is one thing, but spreading misinformation when the facts are available is prejudice. Hearing that again -- this time from her counselor -- gave her a whole-body reaction: "I thought the top of my head was going to explode," she says. "My heart was racing. I thought I was in the Twilight Zone."
Brelsford offered the counselor a copy of an HIV magazine. "I knew better, and I was going to prove it," she says. Many people with HIV behind bars say how helpful it's been to distribute information and bring in HIV educators -- especially people living with HIV (PLHIV) who speak from firsthand experience -- and expert groups like the Red Cross to teach the facts. Laurel Sprague, a woman with HIV who coordinates the U.S. People Living with HIV Stigma Index, has found that educating health care providers about how stigma affects PLHIV changed the providers' behavior. But one person's efforts are often not enough to educate those in power. Education takes repetition over time and is more effective when it comes from several sources. When Brelsford challenged her counselor's inaccurate, stigmatizing statement, the counselor simply walked away. "Other women came up to me, some hugged me and others talked to me," she remembers. Kindness and solidarity can help people find the strength to fight for the truth another day.
Stigma Comes From Systems
Part of the reason it's hard to fight stigma by yourself, without others at your side, is that it's so deeply rooted. Powerful social, legal and cultural structures are built around prejudice.
For example, people are sent to prison for allegedly not disclosing their HIV status to sex partners, or for spitting or biting -- even if there was no risk of transmission and no one contracted HIV. When the public hears about these cases, they're encouraged to think of people living with HIV as an inherent threat to society. PLHIV become defined by their virus, leading others to abuse or discriminate against them. More than 30 states have passed special laws that apply only to PLHIV. Other sexually transmitted infections can be fatal if untreated, but the laws are only for HIV
Similarly, when people see a steady news stream of Black men being arrested, they also start to think of Black men as a threat to society. But racial profiling, like HIV profiling, targets whole communities for arrest. Black Americans are much more likely to be arrested for drug possession or sales than white Americans, even though, for example, the percentage of whites who have used cocaine is twice as high as that of people who identify as Black/African American, according to a 2013 government survey. And white youth are more likely than Black youth to sell drugs, according to several studies reported in the Washington Post.
Building Power in Numbers
Connecting with others who face prejudice is vital, whether through a support group, advocacy or just making friends one-on-one. "Every day of life in prison I have been stigmatized…for the fact that I am transgender," says Lisa Strawn, who is imprisoned in California. She's an active member of transgender and LGBT-friendly support groups that discuss medical, personal, and staff issues and share pride in who they are.
An incarcerated person and a prison staffer started the LGBT-friendly group. Straight people can participate, as long as they're respectful. Strawn connects with the LGBT community in nearby San Francisco for information, support, and visiting speakers for the group. There's also a regular routine. "We start by doing a check-in to see how everyone is. Sometimes the groups are very emotional," she says, adding that a lot of the members have no support from family on the outside. "It's like having a family of sisters and brothers inside prison." The LGBT-friendly group has been so successful that a second one started up.
The groups Strawn participates in give her a way to reach others, too. She was named secretary of the largest of all the prison's groups, Alcoholics Anonymous, where she's the only transgender member. When she spoke in front of the 75 members about not judging others because you don't know what they're going through, she says, "The reaction was great."
Making Things Better
But we can't end prejudice without changing the systems that keep it going. The Stigma Index coordinator, Laurel Sprague, has lived with HIV for more than 20 years. She's part of the Global Network of People Living with HIV, which trains members to advocate for social change. "We don't have to wait for other people to treat us better," she says. "We can mobilize to make things better for our own selves."
Brian Carmichael teaches HIV and hepatitis C classes to all new arrivals at the upstate New York prison where he is serving time. Back when he was imprisoned in California in the early 1990s, PLHIV there faced terrible conditions -- so they organized and told outside groups about the situation. AIDS activists from the area protested outside the prison, and the incarcerated men won their demand: the firstever AIDS hospice inside a prison.
The protest also made a powerful antistigma statement, leading others inside to view PLHIV with more respect. "I remember during the protests one time -- when more than 100 demonstrators came to the front gates of the prison -- going around and playfully talking shit to my friends around the prison, the bikers or gangbangers who for so long had made fun of our protests," Carmichael says. "I challenged them: 'When was the last time all your homeboys protested outside the prison?'"
Formerly incarcerated people at the Center for NuLeadership on Urban Solutions challenge prejudice by changing how people use language. "Calling me inmate, convict, prisoner, felon, or offender indicates a lack of understanding of who I am, but more importantly what I can be," they wrote in 2007. "We are asking everyone to stop using these negative terms and to simply refer to us as PEOPLE. PEOPLE currently or formerly incarcerated…but PEOPLE."
In the pressure cooker of prison life, confidentially can be non-existent. Retribution, violence and sanctions from staff or others inside are very real threats. Correctional staff can play off hostility between groups to control them. No single strategy to fight prejudice will be best for everyone.
But addressing internalized stigma -- the negative messages we tell ourselves about ourselves -- is critical. "With internalized stigma, the best thing to do is to have the courage to look at it," Sprague says. "That's what takes its power away. If we can't be present or sit with what it feels like to be afraid that we're inferior, we can't build bonds with other people who are discriminated against. And if we don't do that, then we can't work together to make things different."
For many people with HIV, connecting with other PLHIV to discover they were not alone helped start this internal process. It can be painful -- and extra challenging in prison. Tim Hinkhouse, who is imprisoned in Oregon, recommends finding a mental health caseworker (and an HIV counselor, if you're living with HIV). He says his ability to ignore negative messages comes from years of therapy during his sentence.
Peers can help you discover your inner strength in the face of prejudice, and you can do the same for them. While Maria "Cookie" Cruz Green was in prison in Pennsylvania the first time, she was afraid to tell anyone she had HIV. The nurses "treated me like I was going to kill them." But she found her voice when she served a second sentence. "I used to be around girls who would cry because the nurses used to make them feel bad," she says. "I used to let them know, 'You don't have to feel like that. Always walk with your head up, because, guess what: You are living with HIV, but you are the one controlling it -- that thing is not controlling you.'"
Breaking the Ice
Experiencing prejudice can be an education in compassion. When Hinkhouse felt what it was like to be targeted by HIV stigma, he examined his own prejudices. He used to "judge someone by the color of their skin based on what other people were telling me," he says; now, "I've changed my perception a lot." He once was prejudiced against gay people, but now he stands up for them against homophobia.
Living in a world so full of prejudice, it can be hard to feel compassion for ourselves and for each other, coming together across our differences to fight for justice. But people do find ways. "Anyone who has suffered discrimination or stigma, whether from race, medical condition, sexual orientation, or being incarcerated, should be empathetic and stand in solidarity with everyone else suffering the same," Carmichael says.
He takes a candid approach: "Usually, if I hear something racist, or based on HIV stigma, it's from some youngster. My typical retort is to say 'Shut up, punk. I've got viruses older than you!' It breaks the ice and lets me educate them."
This article originally appeared in Turn It Up! Read the full magazine.
JD Davids is the managing editor for TheBody.com and TheBodyPRO.com.