I’ve lived with HIV for more than 35 years, including through a period in the mid 90s when I was visibly wasted, weighing only 124 pounds (I am 6’ 1”), and had purple Kaposi sarcoma lesions all over my face and body. When the lesions were the worst little kids would point at me when I walked down the street, dogs barked at me and passersby studiously avoided eye contact.
I start with this story to make the point that I know something about HIV stigma.
I believe that HIV stigma is worse today than it has ever been. Many people who do not have HIV find that statement startling. They remember, or have seen on TV or in film, the days when one had to wear a spacesuit to visit a person with HIV in the hospital; when people were afraid to eat in a restaurant with a gay waiter; wouldn’t touch people with HIV and in general were terrified of us.
We know so much more about the routes and risks of transmission today, so those fears have somewhat lessened. Why then am I asserting that stigma is worse today?
The manifestation of stigma most conscious to those who do not have HIV is the fear of casual contagion. But to those of us who experience the stigma first-hand, HIV stigma is more nuanced, and has evolved over the years.
To us, stigma is about others making a moral judgment about our worth when they find out we have HIV: pre-judging, blaming, marginalizing, or “othering” us. And perhaps most important, it is about self-stigmatization, also called internalized stigma. By these measures stigma has gotten worse, not better.
Stigma is about others making a moral judgment about our worth
When effective combination therapy was introduced in the mid 90s, profoundly changing what it meant to have HIV, many thought HIV stigma would go away as we treated our way out of the epidemic. It didn’t work out that way.
Prior to effective treatment, almost everyone—regardless of whatever religious or moral problems they might have had with homosexuality or injection drug use or commercial sex work or promiscuity—had some degree of human compassion for others who were suffering and likely to die, possibly a horrific and painful death. We were viewed through a lens of pity.
Effective therapy changed that. If we were going to be living longer, that meant we were going to be around longer to potentially infect others. The public health and criminal justice systems started defining us as viral vectors, potential infectors, an inherently dangerous population that needed to be sought out, identified, tracked down, tested, reported, listed, monitored, regulated and, increasingly criminalized.
The media and celebrities are complicit in this as well. In the 80s and much of the 90s, there was a steady flow of warm fuzzy human interest stories, about people with AIDS still valiantly struggling to raise their families and live their lives, while managing a life-threatening illness that had no cure. Inspiring examples of the triumph of the human spirit provoked an empathetic response from the public. Celebrities made support for people with AIDS fashionable.
Today, most of those celebrities have moved on to more trendy causes. The media, when they do reference a specific HIV+ individual, it is more often in a criminal context: an “AIDS Monster” or “AIDS predator”. When someone with HIV is accused of not disclosing their HIV status before having sex, or of scratching, biting or spitting, the media coverage is typically hysterical and frequently inaccurate.
From the earliest days of the epidemic until the late 90s and early 2000s, many people living with HIV (PLHIV) in the U.S.—probably a majority—participated in some type of support group or network of PLHIV.
When we were diagnosed, generally the first recommendation we got wasn’t to go to a doctor, but to get together with others with HIV so we could learn how create a supportive environment around ourselves to withstand the risky consequences of disclosure. Support groups and networks—other PLHIV—are where our questions were answered, where we made new friends and began to rebuild lives that were turned upside down with the news of our HIV positive test.
Today, those support groups are almost entirely gone and the networks lost funding and support. Now some of us are in the process of rebuilding those resources because if we want to fight stigma, we need to focus on empowering the stigmatized.
That starts with getting people with HIV together and enabling us to define our own agenda rather than having others define an agenda for us. Networks allow us to choose our own leaders and hold them accountable, rather than having people with HIV speaking for us who have been selected by others. And importantly, networks enable PLHIV to speak with a collective voice.
In 1983 a small, courageous group of people with AIDS wrote The Denver Principles, now considered an iconic document. Written at a time of great social fear and political hysteria, they spelled out the rights and responsibilities of people with AIDS and those who care for or provide services to us.
They began the document by taking control of the language, pioneering “people first” language:
“We condemn attempts to label us as “victims,” a term that implies defeat, and we are only occasionally “patients,” a term that implies passivity, helplessness, and dependence upon the care of others. We are “People With AIDS.”
They also demanded the right to “be involved at every level of decision-making and, specifically, to serve on the boards of directors of provider organizations.”
The fight against the epidemic must include
the people who have the disease as equal partners in the battle
In the history of humankind, never before had sufferers of a disease united to assert such rights. The Denver Principles expressed a fundamental truth: to be successful, the fight against the epidemic must include the people who have the disease as equal partners in the battle. It was a powerful and radical concept.
That model empowered our community to create a massive AIDS healthcare service delivery system, from scratch, in a remarkably short period of time under difficult circumstances. It empowered us to create our own media, buyers clubs, research organizations, all of which were also tools to combat stigma.
When others would not work at our side, want us to live in their homes, touch their dishes, use their towels or hold their children, it wasn’t the voice of the government or healthcare establishment or media that educated them, it was our empowered voice.
When the nation’s political leadership failed to address the emerging crisis—and was content to watch us die—our collective empowerment is what gave us the political muscle to force change and expedite the development of effective treatment.
But today, empowerment has become a slogan rather than a system. Our political muscle has atrophied and a diagnosis is lonelier than ever. We long for the broader loving HIV and GLBT community that once embraced the newly diagnosed with love, accepted the epidemic as a collective responsibility and assured us “we will get through this together.”
There’s no secret to reducing HIV stigma – all we have to do is look at how we did in the first half of the epidemic. The answers are right there if only the AIDS establishment would support their implementation.
Sean Strub is the founder of POZ Magazine, executive director of the Sero Project, a US-based network of people with HIV combating criminalization and is the author of Body Counts: A Memoir of Politics, Sex, AIDS, and Survival (Scribner 2014). A longtime activist and HIV survivor, he was the first openly HIV positive person to run for the U.S. Congress, produced the off-Broadway hit The Night Larry Kramer Kissed Me and from 2010-2012 co-chaired the North American affiliate of the Global Network of People Living with HIV (GNP+/NA).