Becoming in the Face of Intersectional Stigma—Black, Gay, Woman, and Living With HIV

My name is Ms. Arnetta Phillips. When I was young, the schools were segregated. White students went to White schools, and Black students went to Black schools. We had different drinking fountains, and buses had yellow lines going through the middle—separating us by race. These memories I have as a little Black girl still linger to this day. Growing up, Sunday school at church helped to uplift me. I loved Sunday school because we talked about “loving thy neighbor” and learned that it did not matter where you came from or the color of your skin. However, during regular service, the pastor berated the LGBTQ+ (lesbian, gay, bisexual, transgender, queer) community, which frightened me because I knew at an early age that I liked girls.

For many years I prayed to God to “take the gay away,” forced myself to have relationships with men, and tried to be someone I was not. When I was diagnosed with HIV, I then prayed for God to take the HIV away. Many days, I cried and crawled on the floor praying for my diagnosis to change. The stigma I faced and the sadness that came from not accepting my sexuality and my HIV status took me down the path of addiction. With drugs, I did not have to think, feel, or deal, and it was a way to escape the realities of my life. However, when my father died in my arms from a massive heart attack, I was determined to fulfill his wishes for my sobriety. Once I accepted my drug problem and that I was living with HIV, my life began to change. Twenty years after my initial diagnosis, I visited the pharmacy to get my HIV medication for the first time, and then I sat in the car and cried. I cried because I was finally ready to take charge of my health but also because every day these pills would serve as a reminder that HIV is alive within me. What I did not know that day is that my lived experiences would become a source of empowerment for others.

MAKING AN IMPACT WITH LIVED EXPERIENCES

I have been living with HIV for 28 years, I have been sober for 27 years, and for the past 26 years I have been working at the University of Miami. Through my work with more than 20 research studies as a research coordinator and certified addiction counselor, I have positively affected diverse individuals living with HIV or placed at risk for HIV. My life experiences as a Black woman living with HIV and in recovery from substance use have been fundamental in connecting with my research participants. We often share a deeper connection because of our similar experiences with stigma, discrimination, and shame. As people living with HIV (PLWH), we sometimes find that other people may look, speak, and act differently around us, as well as make assumptions about our lives. Careers, relationships, and typically normal interactions become anxiety inducing because of the judgment. Even now, living with HIV for more than 28 years, facing stigma is still difficult.

In addition, the struggle we face as PLWH is only one of the battles we fight each day. Many Black participants have shared stories of the racial prejudice and bigotry we witness every day. Personally and professionally, I have also witnessed the stigma of being gay, and especially of being Black and gay. Participants have come to me with scars and marks all over their bodies, beaten and raped because of their sexuality. There are still places today where I am not comfortable walking openly as a lesbian because people may stare, frown, and say, “You’re going to hell; it’s an abomination.” To deal with the pain that comes with facing these realities, many participants (like me) turn to drugs as a way to cope. Individuals then make additional inaccurate and hurtful generalizations (“We are weak minded”) about us as people who use substances.

LESSONS LEARNED

HIV stigma, like racism and homophobia, unfortunately, is going to be here for a long time to come. Because of this, I have done the work within myself as an individual facing these intersecting stigmas, and I encourage my participants to do the same. You need to be in complete acceptance of yourself. You need to be able to think, “I’m Black, I’m gay, I’m HIV positive—and I’m good.” A strong network of support can help during this process. It is so easy to slip back into feeling bad about who you are, feeling like you’re worthless, feeling like there is no future for you. If you can connect to a support group or a mental health therapist, or if you have family or close friends who you can talk to, these individuals can help you rise out of that darkness.

I believe it is my life’s purpose to give back, encourage others, and bring hope by sharing my story with other PLWH and those struggling with substance use. I am fortunate to have had the support of my family and friends. The loving, open arms of these individuals have been the greatest gifts I could have gotten during this journey. They have learned alongside me and have helped me to accept every part of myself. I hope to do the same for others living with HIV. By disclosing my status to others and being open about the struggles I have faced, I have been able to touch them, pray with them, provide information, counsel them, and give them hope for the future. This has been a blessing and I am grateful to have this opportunity.

RECOMMENDATIONS

From my experience, I have come to believe that there is much that can be done to make the world more just for individuals facing intersectional stigma and discrimination. Better laws, policies, and practices are needed to protect the full humanity and rights of Black individuals, LGBTQ+ persons, women, and PLWH. First, we need to create and enforce laws that protect us from the horrible violence and discrimination resulting from oppression and isms (e.g., racism and homophobia). We also need to remove stigmatizing and outdated laws that criminalize HIV and disproportionately target Black people.

Second, PLWH should have access to essential resources, such as housing, food, mental and physical care, and employment. In any given week in my role as a research coordinator, I have encountered PLWH who lack these resources; not having these resources often leads to unhealthy behaviors (e.g., substance use) to escape. We need housing, food, and health programs to meet PLWH in the community (without discrimination and judgment) and provide easy access without the barriers created by excessive paperwork and steps. Furthermore, programs are needed to provide PLWH with job training and skills to secure employment. There also needs to be a change in employment policies that exclude PLWH based on histories of sex work, substance use, or incarceration; and there needs to be reentry programs for PLWH with incarceration histories. I have known many people who wanted to work, but employers would refuse to hire them because of their criminal records. As a result, they ended up living on the streets (in a tent, under a bridge) and engaging in sex work or selling drugs to survive.

Third, it is essential that health care workers are competent, compassionate, and adequately trained to engage with clients about HIV, sexuality, substance use, racism, and other aspects of people’s lives. I can usually tell by a provider’s body language if they are uncomfortable with these aspects, and nobody wants to continue receiving care from a provider who is unwelcoming or judgmental. Aspiring health care workers must decide for themselves if this field suits them and if they are willing to treat all patients with dignity, because biases and stigma have no place in delivering good care. Education and continued training on these topics must then be implemented and prioritized for health care workers so that patients can receive quality, affirming care. PLWH who have experienced intersectional stigma are experts on this subject and are well equipped to provide such training. I, for example, have been a guest speaker in courses and trainings for college students, medical students, and various health care providers.

Fourth, a key strategy to combat discrimination and stigma is hiring staff who are PLWH, have shared lived experiences with PLWH, and have a strong commitment to serving PLWH. Individuals like me, a Black lesbian woman living with HIV, should be meaningfully involved in HIV efforts whenever possible, be it research, practice, or policy, to ensure that our voices and lived experiences inform change.

Lastly, researchers should center the needs of PLWH in all research practices, including training, hiring, and implementation. Many personal questions are asked during research studies, and participants often share deep and difficult experiences. Researchers, therefore, need to be cognizant of participants’ emotions and be trained and qualified to address situations that arise and provide resources or referrals to participants as needed. We need to be treated as human beings, not as a subject or as a number.

With these suggested changes, I hope we can work toward a society that is far more accepting and supportive, so that PLWH face less stigma and discrimination and are empowered to get the care they deserve. The dream I’ve always had is to be able to walk freely and openly, without fear, rejection, or shame, in a world where people do not discriminate because of what you look like, who you love, who you are, and the health condition you have.