In a recent profile, Jonathan Van Ness of “Queer Eye” courageously shared his story as an “out-and-proud member of the beautiful H.I.V.-positive community” who has remade his life after experiencing childhood sexual abuse, drug addiction and shame.
As a sociologist who has spent more than a decade interviewing women who are living with H.I.V., I saw in Mr. Van Ness’s story the larger social and political urgencies of the epidemic.
First, his narrative highlighted something I’ve seen in my research: that sexual abuse is an unspoken driver of the H.I.V. epidemic. With its haunting afterlife, sexual trauma, especially when it occurs in childhood, destroys one’s sense of self and safety.
Sitting across the table from sexually abused women in interviews, I came to dread a particular moment. When it happened, the vulnerability and pain in their eyes shook me. Several interviews in, I began to sense in advance that the moment would come — certain events they shared were clues like bread crumbs. By the end of my fieldwork, I could anticipate, almost to the moment, when women would reveal their secret. Among the 84 women living with H.I.V. from diverse racial, ethnic and economic backgrounds that my team and I interviewed, one in four revealed they had been raped or molested before the age of 25, and a stunning two-thirds of those with histories of drug addiction reported experiences of early sexual abuse. And these numbers are likely less than the actual incidence rate, given the trauma, shame, and silence associated with this experience.
People who experience sexual assault in childhood or early adulthood typically do not acquire H.I.V. from the specific incident of abuse, although that does occur. Rather, according to the Centers for Disease Control and Prevention, those who have been sexually abused may be more likely to engage in riskier sexual behavior like exchanging sex for drugs and having unprotected sex with multiple partners, just as Mr. Van Ness described. These behaviors can serve as coping mechanisms or forms of self-medication. Women and men who have been sexually abused as children are also more likely to experience more sexual violations and may find it more difficult to negotiate sexual parameters in relationships, potentially increasing their risk of exposure to H.I.V. What we dismiss or judge as promiscuity is often pain in practice.
Second, Mr. Van Ness’s story reminds us that as the floor drops out from under us, we all need safety nets. He was fortunate to have a supportive family, financial resources to help him start anew and a professional network that recognized his talents and steered him to the right opportunities. Unfortunately, that kind of safety net isn’t available for everyone. In particular, people of color, women, poor people and those marginalized in many ways are much more likely to end up homeless, incarcerated, underserved by the health care system, or even dead than their white, male and wealthier counterparts.
Transgender people are especially vulnerable. The television drama POSE, which chronicles the lives of black and brown queer and transgender people in the New York ballroom community in the 1980s and 1990s depicts this powerfully. The characters’ struggles are compounded by the devastation of the early days of the AIDS epidemic as it killed people at an alarming rate because of slow intervention from the government, a lack of public compassion and no cure.
For those who don’t have access to resources, the H.I.V. safety net — which includes the Ryan White CARE Act, the Housing Opportunities for Persons with AIDS program, the AIDS Drug Assistance Program, and the Affordable Health Care Act, all of which help people remake their lives after an H.I.V. diagnosis by granting access to much-needed resources — is essential. Created by the early mobilization of AIDS activists, and now funded through public, private and nonprofit dollars, it is one of the most important and effective policy creations of the last several decades.
Mr. Van Ness’s story also has something to say to those who seek to defund and destroy Planned Parenthood. This organization helped to save his life by providing the information that he needed about his H.I.V. status. Four years after Mr. Van Ness tested positive, Austin, Ind. — a poor, predominately white, rural town located about 80 miles south of Indianapolis in a county that registered the highest per capita use of OxyContin in the state — saw one of the largest H.I.V. outbreaks in recent years. Among the many challenges thought to fuel the community’s epidemic was the lack of available H.I.V. testing locations: Scott County had closed its only H.IV.-testing clinic, a Planned Parenthood clinic, in 2013.
Just weeks ago, H.I.V. activists and those living with H.I.V. descended upon Washington to attend the United States Conference on AIDS. Their movement, with its roots in the gay liberation and civil rights movements, stands as among the most effective political mobilization efforts of our time. On the conference agenda was the Trump administration’s proposal of $291 million in the 2020 budget to implement an End the Epidemic initiative which, if funded, would focus efforts on the hardest-hit communities. The goal is to reduce new H.I.V. infections by 90 percent within the next 10 years. The H.I.V. community is understandably skeptical and cautious, given the assault that the administration has waged against the communities most impacted by the epidemic: LGBTQ, black and brown, and poor.
Given the effectiveness of available medications, and the ways in which H.I.V. has been transformed from a likely death sentence to a manageable chronic illness, there is reason to be cautiously optimistic. But what we have much work to do.
Ending the AIDS epidemic means addressing sexual violence, and getting survivors the help they need to avoid self-destructive behaviors. Policymakers must provide the resources for increased H.I.V. screening and counseling in settings that treat survivors of sexual violence, and health care providers should screen people living with H.I.V. for histories of sexual and other forms of trauma and link them to appropriate services.
We must repair the safety net where it is tattered and establish it where it is nonexistent but needed, so that it works equally well for all populations. We must also acknowledge the inequities that drive the epidemic and find ways to confront the ineffective policies, vicious politics, social stigma and ignorance that can undermine even the best public health interventions. We must remember and serve those whose stories of resilience, resistance and survival rarely get the spotlight. Only then will we end the H.I.V. epidemic once and for all.
Celeste Watkins-Hayes is a professor of sociology and African-American studies and faculty fellow at the Institute for Policy Research at Northwestern University. She is the author of “Remaking a Life: How Women Living with H.I.V./AIDS Confront Inequality.”
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