Actor Charlie Sheen disclosed he is living with HIV Tuesday morning in an interview on NBC’s TODAY show — or rather more correctly, on Monday it was leaked to the media that Sheen would disclose his status. People have been living with HIV for decades, yet somehow a narrative has been pushed in segments of society that everyone has a “right” to know the status of all people who are HIV positive.
Due to a “say it before it gets told” situation, Sheen has now become the newest casualty in this long history of stigma and shame around the virus and society’s views around disclosure.
As a person living with the virus, and a worker in the field I first hand know the danger of having your status told to others with you being left behind to have to pick up the pieces. I stand behind Sheen, because he will enter a world where he will be shamed for status and living in his truth. He will now face questions like: “Has he infected anyone,” before anyone ever asks: “How is he doing?” With that said, I would be remiss if I didn’t also acknowledge that because of Sheen’s wealth, celebrity, and White privilege, he will still never face the same shame, stigma and barriers that Black gay men who are by far the most heavily affected by the virus.
When you look at the intersection of many other factors such as religion, gender, sex, socio economic status, structural oppression, and simple lack of education in the more marginalized communities, the stigma and shame faced by Black gay men living with the virus is quite complex and different than other subgroups effected by HIV. According to the CDC (based on a 2010 report), African American gay, bisexual, and MSM (men who have sex with men) represented an estimated 72% of the new infections among all African American Men. More new HIV infections occurred among young African American gay and bisexual men aged 13 – 24 than any other subgroup of gay and bisexual men.
For Black MSM, this story can be a grim one when you look at the statistics. HIV positive individuals in the Black community have an uphill battle against them even before you get to the stigma around living openly with your status. There are many barriers to healthcare in the Black community that can delay treatment for those individuals which directly affect the low numbers we see when we look at our care continuum. People are quick to want HIV positive people to “declare their status,” but refuse to acknowledge that many of us can still be arrested and imprisoned under laws that criminalize people with HIV, which disproportionately affect African Americans, especially MSM. This barrier alone has stopped many who know they have been infected from ever getting tested until they have a medical necessity to have to do so. The guilt of letting ones family down, the “leper” mentality of community, financial insecurity, and the constant reminder of taking a pill a day for the rest of your life all compounds into a perfect storm of stigma and shame which hurts Black MSM the most.
Even with all these barriers the Black MSM community continues work diligently to not only diagnose new positives, but find those people who are HIV positive and out of care. Through Ryan White Funding, and the Affordable Care Act we are able to get people into treatment with the optimal goal of getting them to an “undetectable” status. Groups like Us Helping Us People into Living has been fighting the virus for more than 28 years. Starting out as a support group for Black gay men in the 80s who had been infected, it has now grown to a multimillion dollar non-profit that continues to the fight for those living with the virus. Its work is what continues to galvanize the community to change views created around HIV positive individuals in an effort to normalize the virus, and create necessary conversation about treatment of people living with HIV.
Sexual health and responsibility can no longer be the burden of HIV positive people. For some reason, a belief exists that people who are HIV positive have a duty and obligation to share their status with world regardless of the situation. But let me be clear: You do not have a right to know.
You do have the right to a conversation with your partner and to ask questions around sexual health. You have the ability to then have the conversation and ask your partner if they are HIV positive.
The person can respond in one of two ways. They will either tell you what their status is or they will refuse to answer the question. At this time you have a decision to make. You can either sleep with someone of an unknown status or you are free to leave. Letting your “attraction” or “need” to have sex should not overrule your capacity to making an informed decision around the risk you are taking sleeping with a person who hasn’t revealed their status.
HIV positive individuals in the Black MSM community are not just surviving but are thriving. We are lawyers, doctors, teachers, family, and friends. HIV is not a death sentence as there are now millions living with this manageable, treatable, and what most doctors would describes as a chronic condition similar to diabetes in treatment. We are more than the stigma society places upon us.
We are more than the shame and guilt projected on to us. We are humans.
George M Johnson is a manager of testing at Us Helping Us People Into Living, located in the Washington D.C. area. Follow him on Twitter @iamgmjohnson.