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HIV/AIDS Blog Central

EndGame: Part One Game ...

By Rae Lewis-Thornton

July 11, 2012

This piece originally appeared in Rae's blog, Diva Living With AIDS.

Last night I watched and live Tweeted the Frontline Special EndGame, the PBS documentary on HIV/AIDS in the Black Community, and it left me with an overwhelming sadness. If Black America was a developing country in and of itself, we would be 16 in AIDS. Do you get this?!? If you take ALL the Black Folks in AMERICA and made us a country we would be 16th in HIV/AIDS in the WORLD. I have known this bit of fact for a while; Phill Wilson, the founder of the Black AIDS Institute, has been shouting it from the top of his lungs, but it continues to go on deaf ears. Hearing it again only served to remind me how BAD it really is.

I had to make some tea and settle my nerves. I even went looking for some comfort food in my kitchen and settled on graham crackers because I'm really trying to lose weight. No point in making me sadder. #ForReal

This morning I'm still messed up. I'm Sad for the Black community, Sad for me and Sad for every person living with HIV. I don't even know where to begin. It was one of the most balanced documentaries on AIDS in the Black Community I have seen to date, with one exception. People continue to say that Black Civil Rights Leaders were slow to speak up on AIDS. That is NOT totally true.

Rev. Jesse L. Jackson was the first Presidential Candidate to have an AIDS Policy in 1984 and 1988. He slept in AIDS Hospice to show support and solidarity with those dying from AIDS. We as a political family had already been impacted. We lost Keith Barrow the R and B singer and son of Rev. Willie Taplian Barrow to this disease in 1984. So there were some who got it early and were a voice. Rainbow/PUSH has continually worked on this issue. I know this to be true because Rev. Jackson asked me to organize ministers to be tested at the Saturday morning fourm. We had well over 80 ministers publicly testing for HIV to challenge fear and stigma, long before ministers started testing in the pulpit. This is just one example. I mention these things because I will not allow that fact to be written out of history. But for the most part, Julian Bond was truthful. Black leaders didn't see this as an issue for them. Coming clean on that fact was POWERFUL!

Black Leadership must, must, must take a stand. Mr. Bond named it: Our hate and silence is helping to foster an environment where the infection is growing. The fact that a Black Pastor said on national television that God is a God of judgment and so it's OK to throw away black gay men, who are our fathers, brothers, uncles, cousins, pastors and friends, is mind boggling. It does nothing to show the God of Love. That's the one I serve, I don't know who he is serving and preaching about on Sunday morning. I was so glad that the other pastor said, "If God is a God of judgment, then let God do the judging." In Jesus' earthly ministry, His commandment was clear, love thy neighbor as thyself. What we are doing in 2012 has nothing to do with love. NOTHING!

This hate that we are shouting from the pulpit about homosexuality fosters an environment of shame, stigma and misinformation. This leads to silence on the one hand, and ignorance on the other. Continually connecting HIV to sin does not help us conquer this disease. The Bible says ALL have sinned and fallen short of the glory of God. ALL means from the Pulpit to the Pew. We need to check ourselves before we wreck ourselves.

When did the Black community stop being a village? When did the Black Church stop being a place of nurture? When did we stop being a safe place to come when we hurt? When did we stop being a voice for our people when they hurt? When did the Gospel of Jesus become what we can get from God over and above what we can give to God's people? Julian Bond is right, we are ALL culpable in the spread of this disease.

The stigma around this disease is CRAZY! Just CRAZY! To think 32 years into the epidemic someone will throw a refrigerator out after a person has died from AIDS, rather than use it, blows my mind. This creates an environment of shame for people living with HIV which forces us underground. Watch this: If you feel this way about me in death, how do you feel about the living me? Who would I tell? Silence and the secret becomes my best friend. That creates depression which will affect how I take care of myself. They said compliance is 100 percent of the ball game for longevity with HIV. When people are depressed, getting through the day is an effort and taking medication is a journey and a reminder of the burden you carry daily.

Then who wants to go get tested and discover that they have HIV in a climate of hate? When we don't go get tested we infect others. Equally important, we don't discover that we are infected until we are already sick and progressed to AIDS, which means we don't benefit from treatment and care as we could. Stigma effects this cycle and if we are going to tackle this disease head on, it must begin with stigma.

I smile through my pain every single day. I keep it moving and I continue to be a voice for the voiceless because I know no other way to live. But the burden of living with HIV/AIDS is heavy. I can't even begin to explain and do it justice.

There is so much to talk about as it relates to AIDS in the Black Community. I will continue every week to share my thoughts from the documentary.

But at my baseline, the issue of stigma that fosters hate must change. For a woman to live in secret with her HIV status because she's afraid if she discloses to a man in her community, that she would be shot is crazy. But for some women this is a reality and it all goes back to how people see HIV/AIDS.

It hurt my Heart that this middle age woman started dating after her divorce, met a wonderful man at church, dated and married him to discover by accident that her husband was infected with HIV and when she asked him about it, he said that he was afraid of rejection. So rather than a possible rejection, he kept silent and infected her.

At the core is how we see people with HIV. We hear the jokes and the hate that is dished out every day from our beauty and barber shops, at our family gatherings and our churches and now through social media. This hate fosters silence.

It hurt my hurt that the young lady with HIV couldn't show her face. It just ripped at the very core of me.

I understand that shame. I kept my infection a secret for 7 years other than the men I dated. I get the fear, the shame, the judgments. I've been called a whore; I've been told that God is punishing me; I've been denied a tattoo at a Black owned Tattoo Parlor; I've sat in the clinic waiting for someone to draw my blood and being passed over for other patients without HIV that walked in after me. Even today, people still say some crazy shit to me. You gotta be way strong to hang in this mean world we live in today.

I think the beginning of the EndGame has to start with the fight against Stigma and Shame. Do your family members or friends living with HIV/AIDS know that they are not alone? I mean really know. Do you know more about my life with HIV than theirs?

At our baseline we have to start where we are hit the closest, in our own life. The isolation that people with HIV feel is insurmountable. I even feel it. People think I don't need anything because I'm a trooper... Ha, being a trooper doesn't take away the pain or make the living easy. Your love will help make the living easier.

Eradicating Shame and Stigma Around HIV/AIDS is the beginning of the EndGame for the Black Community....

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More Views on HIV/AIDS in the African-American Community

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Rae Lewis-Thornton Speaks

Rae Lewis-Thornton

Rae Lewis-Thornton

Rae Lewis-Thornton is an Emmy Award-winning AIDS activist who rose to national acclaim when she told her story of living with AIDS in a cover story for Essence Magazine. She has lived with HIV for 27 years and AIDS for 19. Rae travels the country speaking and challenging stereotypes and myths about HIV/AIDS. She has a Master of Divinity degree and is currently working on her Ph.D. in Church History. Rae has been featured on Nightline, Dateline NBC, BET and The Oprah Winfrey Show, as well as in countless magazines and newspapers, including Emerge, Glamour, O, the Oprah Winfrey Magazine, Jet, Ebony, the Washington Post and the Chicago Tribune, to name a few. She earned the coveted Emmy Award for a first-person series on living With AIDS for Chicago's CBS News.

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