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Who or What Got You Involved in HIV/AIDS Activism in the Black Community?
A Part of Our "Word on the Street" Series

By Mathew Rodriguez

February 25, 2014

Who or What Got You Involved in HIV/AIDS Activism in the Black Community?

Becoming an AIDS activist/advocate is not something most people grow up thinking they will do -- it's not exactly a job like "firefighter," "lawyer" or "doctor." For people who find themselves advocating for those living with HIV and those at risk, it usually means that someone or something -- a mentor, a life event, a change in perception -- led them to take up the mantle for those affected by HIV. For many people of color, finding a mentor or knowing someone living with HIV is often the catalyst to becoming a brother or sister in the struggle against HIV/AIDS. To explore this idea further, we asked a handful of black HIV/AIDS activists, "Who or what got you involved in HIV prevention and care in communities of color -- especially the black community?"

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Rob Newells

Rob Newells

Minister, Imani Community Church

When I tested positive for HIV in 2005, my first response was, "Well, God… What do you want me to do with this?"

Four years later, with the encouragement of Minister Rhonda White-Warner (1951-2014) and the support of my pastor, Dr. George C.L. Cummings and the Imani Community Church in Oakland, Calif., I returned to the HIV advocacy work I had left years earlier.

This time -- in contrast to my volunteer work with a local agency in North Carolina in the late-1990s and my employment with the National Minority AIDS Council that followed, all of which had been motivated by my desire to support family and friends living with HIV in Oakland -- I was called to work both in and through black churches to eliminate stigma and provide culturally-relevant HIV information to African-American communities most affected by new infections and least served by most mainstream HIV education efforts.

Since starting the Healing Faith HIV Ministry at Imani Community Church in 2009, I began work on a Master of Divinity degree and Certificate of Sexuality and Religion, I became licensed to preach the Gospel as an American Baptist minister, and I have had numerous opportunities to learn from and present to HIV prevention and treatment advocates from around the world. More importantly, I have been able to share information with my community that they would not otherwise receive.

This is what God wants me to do with HIV.

Elijah Shippe

Elijah Shippe

Community Liaison, Steinway Child & Family Services & Affiliate, National Black Leadership Commission on AIDS

I began working in the HIV/AIDS field in January 2012. I started out as a Peer Educator and Youth Advocate for the Child Center of New York (CCNY). My job was to facilitate comprehensive HIV-related workshops and provide information to the South Jamaica, Queens, community.

Before working for CCNY, I noticed some of the health disparities present in various low-income, minority communities. A colleague was adamant about making positive changes in his community, and his passion caused me to become interested as well.

Since then I've worked hands on with other community-based organizations and faith-based organizations around New York City to educate people of all ages about HIV and optimal sexual health. Attending trainings, community meetings, and events has created opportunities for me to learn more about the importance of health education and spreading awareness to one's neighbors.

It has been a pleasure to do this work because I know our collective efforts can indeed allow our communities to access the resources they need to thrive, while enabling us to continue to advocate for basic human rights.

Patrick Ingram

Patrick Ingram

Testing Coordinator, Fredericksburg Area HIV/AIDS Support Services, and Blogger,

I got involved in HIV prevention after I noticed the positive feedback, support, and effectiveness my YouTube channel received when it started. I started doing videos, which resulted in the website PozLifeofPatrick, which I created when I noticed there were not many young HIV-positive African-American men who were openly discussing topics surrounding HIV via social media.

My brother in this battle Justin B. Terry-Smith (pictured, on the left) keeps me motivated to continue the work when it gets tough. He's that perfect mentor I have had since I started doing this work.

When I was initially diagnosed, I had so many issues connecting to care, I wanted to give up. My good friend Corey literally picked me up and took me to Whitman Walker Clinic in Washington, D.C., where I was linked into care. Without him I would have never gotten into care nor gained the empowerment I needed to do that work in HIV advocacy and prevention that I do now.

Shirley Torho

Shirley Torho

Project Manager, Select Media Inc., and Community Co-Chair Elect, New York City HIV Prevention Planning Group

My journey in HIV/AIDS advocacy has evolved as I have come to better understand the social determinants of health and how structural policies impact transmission, infection and prevalence rates.

I began this work at age 17/18 as a vaccine research intern, a bit detached from the humanistic aspect of the epidemic. Until I actually had the opportunity to interact with women of color, very much like myself, in the community, about their behaviors, their choices and the circumstances that led up to their diagnoses, I didn't really comprehend the magnanimity of the cause for which we were fighting.

Almost a decade later, there is more intentionality in my work, and I am committed not only to stopping new infections and ensuring that those who are infected continue to live thriving, fruitful lives, but also to address the inequities and disproportionate access to resources that facilitate the epidemic.

I suit up daily with pride, an opened heart and mind, a fierce dedication to human life, and am moved by the millions of interconnected lives that fight this war collectively.

Robert Suttle

Robert Suttle

HIV/AIDS Advocate

It was eight years after my own HIV diagnosis and prison release that I got involved in doing HIV prevention and treatment work. Needing a new life plan, I volunteered at my local AIDS service organization, which eventually hired me full-time as a case manager and prevention specialist. I worked with other young African-American, HIV-positive men who have sex with men.

I, later, realized these unique experiences that have affected my life -- my HIV status and my incarceration -- were complex and sometimes difficult to separate. It is difficult to address HIV without addressing how interconnected it is with a whole range of social concerns.

People of color, especially young black men, gay or straight, are at the highest risk of incarceration and at the highest risk of acquiring HIV. Both represent a terrible injustice, but when you add HIV criminalization, it becomes an injustice of historic proportions. I was convicted for failing to disclose to a former partner, who then went to the police and pressed charges against me after we broke up.

Today, I speak out loud about HIV criminalization, recognizing it as an obstacle to HIV prevention -- and that it really is creating a disabling legal environment for those of us with HIV while labeling us primarily as potential infectors or viral vectors, who must be regulated, controlled, prosecuted and imprisoned.

We can prevent HIV by reducing stigma, or we can prosecute HIV, by locking up those of us who have it. But we can't do both.

Photo credit: Jennifer Doherty

Steven Emmanuel-Martinez

Steven Emmanuel-Martinez

AVAC: Global Advocacy for HIV Prevention

The motivating forces behind my work in HIV prevention are my family members and friends who are living with the virus. It is my conviction to curate a world that is accessible to them -- a world without stigma, discrimination and degradation.

I have witnessed how stigma breaks familial dynamics, how ignorance damages friendships and relationships, and how people often contest learning about the virus, because the idea of knowing the truth frightens them.

Realizing early in my youth the pervasive ugliness that surrounds this virus is what has kept me involved in prevention and advocacy. I believe that the main way that we can create an AIDS-free generation is when every hand is on deck. The centerpiece of my work is to get people to realize this.

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