When Stigma Unravels

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Thursday night, I put on makeup and a fancy dress and walked into a ballroom with 450 co-laborers in the fight against HIV/AIDS to celebrate Blood:Water’s annual Red Tie Gala — a night dedicated to advancing the fight to end the HIV/AIDS crisis in Africa. I went into the night with a heavy heart but left with deep gladness. You see, a year ago I lost a dear friend named Joseph to a secret he had kept hidden from everyone close to him.

I met Joseph in a small village in Kenya where Blood:Water has supported HIV and water programs for almost 10 years. Joseph was in his early thirties when we met, but his boyish features, small frame, and easy laugh made him seem younger.

Over time, I got to know his personal story. His mother died when he was a baby and his father struggled to bring him up. Joseph attended high school, but wasn’t able to complete his schooling due to lack of fees. He received some job training as a mechanic, and when Blood:Water supported the opening of a health center in his home village, Joseph was hired to serve as the ambulance driver. This job provided well for his wife and growing family, and everyone could tell how excited he was about the job.

Over the seven years before his death, I watched Joseph pour his heart and calling into serving others. A few times I joined him on his ambulance runs in the village to pick up laboring women or children suffering with malaria and bring them safely, compassionately to the hospital.

In Joseph’s home area, one in five adults has HIV, and he became one of the greatest HIV activists in his community. You can imagine how difficult it might be to talk to a community about AIDS, but I watched Joseph actively mobilize community members to attend the mobile outreaches for HIV testing. He had a way about him where people wanted to follow.

As a result, he helped more than 1,500 of his HIV-positive neighbors receive the treatment they needed for a flourishing life. He helped ensure HIV-positive mothers received the care and treatment necessary to prevent the transmission of HIV to their babies. He was a beautiful example of how one person can impact so many.

But almost exactly a year ago, on December 14, 2014, my husband, James, and I received a call from Kenya to inform us Joseph had suddenly died. We knew he had been struggling with some upper respiratory illness, but nothing that would be so detrimental as to take his life. Our colleague on the phone went on to inform us Joseph had been living with a secret for several years. He was HIV-positive and refused to tell anyone until his last two days, at a point when his immune system was diminished beyond treatment. As James and I stood in Times Square with the Christmas lights blinking and holiday buzz all around, we wept in shock. He was 38 years old and left seven children behind.

It’s important for us to remember that in the fight against HIV, we’re not just battling the science of a virus. Because Joseph did not die from a virus. He did not die from lack of access to health care. He died from that deep human sensation called shame, and from fear of the perennial social ill called stigma. And they feed off of each other. To feel alone, to feel ashamed, to be afraid — these are also life-threatening diseases.

Joseph’s colleague, Robert, wrote me an email last week that said, "The worst that happened could have been avoided if he only opened up to us.” And if someone as bright and talented and so well-loved as Joseph couldn’t believe his community would embrace him with love because, I think, he somehow couldn’t embrace himself, then we’re not even close to breaking the stigma wrapped around living with AIDS.

But here’s the good news: The international AIDS community is not just focused on getting to zero new infections and zero AIDS-related deaths, but also to zero discrimination, which addresses shame and stigma. And we at Blood:Water get to resource the organizations who are the frontline workers in the battlefields of stigma and shame. Because stigma and shame lose their power when one by one, people emerge out of their own shadows of fear and experience the embrace of love. Shame loses its foothold when broken people come together to sit in a circle and share their testimonies with one another and each is affirmed for who they are, and from where they have come. Stigma gets left in the dust when HIV-positive men and women live openly with their status and then surprise their neighbors as they work as community health promoters and tailors and teachers — and when HIV-positive mothers give birth to HIV-negative children. Stigma unravels when faith communities kick the judgement off the soles of their feet and walk on a beaten path together as broken, beautiful children of God.

I went into the Red Tie Gala with a heavy heart thinking of Joseph. But I also told you I left with gladness. That night, Blood:Water asked the event attendees to help fund a clinic in Isiolo, Kenya, for an entire year. Generosity flowed that night, and we reached that goal.Funding a clinic doesn’t just mean medical treatment is guaranteed. It also means that our partner on the ground in Kenya is equipped to educate and love on those living with HIV. Together we will get to zero new AIDS-related deaths, zero new infections, and just as importantly zero discrimination.

Interested in learning more? Visit bloodwater.org/projectzero.

Photos from the night, courtesy Getty Images:

 (L-R) Blood:Water Board Chair Stuart McWhorter, Jena Lee Nardella, Ambassador-at-Large Deborah L. Birx, Board Member Scott Morris, and Board Member Porter Delaney

(L-R) Blood:Water Board Chair Stuart McWhorter, Jena Lee Nardella, Ambassador-at-Large Deborah L. Birx, Board Member Scott Morris, and Board Member Porter Delaney

 Singer-songwriter Emmylou Harris performs onstage during our Fourth Annual Red Tie Gala

Singer-songwriter Emmylou Harris performs onstage during our Fourth Annual Red Tie Gala

 Ambassador-at-Large and Red Tie Gala Honoree Deborah L. Birx taking a fun photo with me during the Red Tie Gala

Ambassador-at-Large and Red Tie Gala Honoree Deborah L. Birx taking a fun photo with me during the Red Tie Gala