amfAR, The Foundation for AIDS Research

Breaking Through Stigma: A Conversation With HIV Activist Ken Williams

Awareness DayKen Williams, a program manager for AIDS Foundation Houston, was already a blogger for the LGBT community when he found out he had HIV. He then set out to chronicle his experience to reach others struggling to live with the virus. His message has always been hopeful and includes spreading the word on the importance of testing.

According to the U.S. Centers for Disease Control and Prevention, about 1.1 million people in the United States have HIV, and in 2015, almost 40,000 people were newly diagnosed. Currently, one out of seven people with HIV in the U.S. don’t know they have it, and three in 10 new infections are transmitted by those whose HIV is undiagnosed.

In order to link people to treatment and to prevent new infections, the CDC recommends routine HIV testing for everyone between the ages of 13 and 64 and for all pregnant women.

In observance of National HIV Testing Day on June 27, amfAR spoke to Williams about HIV testing and stigma in the LGBT community and the high rates of HIV among black gay men.

How did discovering that you have HIV influence the direction of your video blog projects?

As one could imagine, there was a lot of trauma associated with my HIV diagnosis. I was angry with myself, believing that I had dropped the ball on my health. At the time, the only ‘healthy’ way my body knew how to exonerate itself from feeling savagely dejected was denial. Denial alleviated a lot of the internalized-emotional stuff I wasn’t capable of handling; so I numbed by keeping quiet. And for a time, my silence seemed to be the remedy—if I didn’t admit HIV to myself then I didn’t have HIV to admit, which then nullified my anger.

However, there came a point when I realized denial wasn’t healthy either. The immediate sense of gratification that denial offered was that it distanced me from a stigmatizing culture that has been historically cruel to the marginalized—especially people living with disease. My silence protected me from all sorts of violence and ridicule and it lessened my internal frustrations, but denial also severed me from my authenticity. It stunted my healing and challenged my resilience in ways that shrank it, because in order to survive in a fear-based society, I was convinced that as a black, gay, HIV-positive man I either had to remain quiet or not exist at all—and I grew tired of pretending I didn’t exist.

Ken Williams at AIDS Foundation Houston (Photo courtesy of Dalton DeHart)

So I took to my platform, Ken Like Barbie, to share my experience, with hopes of restructuring the narrative around the epidemic, around the communities that are most vulnerable to the disease. I wanted to provide a language for men and women with similar experiences to say ‘I am here … and HIV doesn’t make me disposable despite your ignorance or apathy.’

I wanted to demonstrate the freedom that self-acceptance can bring, and the importance of giving yourself permission for a second chance at impeccable health and self-love that is more durable than society’s opinion of who and what makes something or someone acceptable.

What do you think can be done to reduce the stigma that gets in the way of people being tested for HIV?

Besides the aspect of shame and seclusion, I think one of the goals of stigma is to scare its victims into a sense of confusion. We’re all attuned to the fear associated with HIV; it’s the same fear that keeps criminalization laws on the books that target folks living with HIV for non-violent incidences of spitting, when scientifically we know that spitting isn’t how HIV is transmitted. How are these laws even fair?

Creating confusion is a tactic that people who stigmatize rely on to give fear momentum, and the result has been communities of people either not wanting to know their HIV status, so they don’t test, or not associating themselves with being at risk because of how the epidemic is portrayed to be a disease of misconduct. In order to combat that, I think we have to find more ways to normalize testing, to normalize the lives of those living with HIV, and to celebrate the successes of scientific advances.

Ken Williams on the cover of PA Magazine, 2014Ken on the cover of PA Magazine, 2014The CDC projects that if current trends continue, about 1 in 2 black men who have sex with men in the United States will be diagnosed with HIV during their lifetime. Why do you think gay black men are becoming HIV positive at such alarming rates, especially in the South?

I think gay black men are becoming HIV positive at alarming rates because gay black men are still BLACK MEN who have historically, and systematically, been disenfranchised in this country. Because healthcare in America is a system of privilege and more often than not, especially in the South, access to that system is a thing of privilege.

Gay black men are becoming HIV positive at alarming rates because communities of color are often concentrated in areas where medical deserts and/or educational deserts and/or food deserts are standard—HIV has become a symptom of poverty. Because part of what makes HIV stigma so deadly is when fear and ignorance have been given lawful authority to further create separations between the privileged and the impoverished. Because America practices racism more than it has equality. 

What do you think can be done to reduce these extremely high rates of HIV among black gay men?

Provide communities of color with greater access to health services and education; don’t dismantle Obamacare; expand Medicaid. HIV is steeped in politics. Let’s stop focusing on politicizing HIV and start putting more effort toward normalizing it and supporting those affected.

How do you think HIV cure research ties in with current efforts to prevent, diagnose, and treat HIV?

Cure research changes the verbiage around the epidemic from HIV being unquestionably terminal to HIV being livable, controllable, and chronic. So from a prevention and diagnosis standpoint, there is an underscoring of hope that cure research brings. As someone who has been living with HIV for years, I feel confident in knowing that the dialogue has shifted. Once in the history of the epidemic, the best science could offer was making clients comfortable in their last few days. Now not only are people living longer and healthier with HIV but we can also comfortably talk about curing this disease and not sound radical! There is hope!

Ken Williams is one of amfAR’s Epic Voices featured on the Countdown to a Cure website.