Dark Cloud Above

Stigma and The Fight Against AIDS In The 21st Century

ANDREW LODGE

Not too long ago, I was fortunate enough to meet a fascinating man in a remote community in Northern Canada. “Frank” is an older man, an ethnic fusion of Cree, Dene, and French who had lived all over Canada and had all kinds of stories and all manner of perspectives. He was a recovering alcoholic and heroin junkie, born in northern Manitoba, and who, as an adult, had escaped the madness of Vancouver’s Downtown Eastside. Well, almost escaped. Before he made it out, the needle left a little something extra in his arm. In the early ’90s, Frank was diagnosed with AIDS.

“I’ve been living with this disease for a long time now. It’s not easy to talk about. It’s not about the dying. That was hard at first but not so much now. It’s more about what people say about you when they find out that you have AIDS. With this disease you are more alone than you can ever imagine.”

Frank’s story unfolds in a tragically familiar pattern. Sadly, despite its commonality, it is a story that is also hidden, one that has been seemingly — without speech or formal plan — cast onto the margins where the shadows are long and dark. Since its emergence onto the global consciousness back in the early ’80s, more than almost any other disease of modern times, AIDS has carried a stigma as powerful as the disease itself.

ORIGINS OF STIGMATIZATION

This pass week, at the International AIDS Conference held in Toronto, high-profile organizers sought to take the issue head-on. In a manner bizarrely familiar to the Bob Geldof-Bono conglomeration of the past summer when poverty was made into history at a series of rock concerts, at this year’s conference Microsoft founder Bill Gates, along with his wife Melinda and former U.S. President Bill Clinton, emphasized the importance of stigma in the global effort to combat the HIV/ AIDS pandemic.

To what degree their efforts will have an impact on the stigmatization of the disease, and those afflicted with it, remains to be seen. Celebrity endorsements of social causes are common enough and do seem to transiently heighten awareness, but what long-term effects such endorsements have is much more difficult to assess. To be sure, it is hard to fault anyone for championing the cause of the marginalized, but as several frontline AIDS activists pointed out this past week, stigma is pervasive and something that must be challenged at the very core of society’s normative sphere.

There is no doubt that the stigmatization of AIDS has been remarkably durable and has managed to transcend many boundaries. It is a fact not lost on those working on the disease in the trenches. They point out that the negative and discriminatory attitude towards AIDS and its victims has managed to create bonds between groups with no other common ground. Look no further than conflicting religions. Some conservative Muslims and conservative Christians, so at odds with one another on so many issues, agree that AIDS is no disease, but instead a punishment from God.

The unifying nature of stigmatization is reflected in earlier understandings of the notion of stigma in general. Erving Goffman, the theorist who perhaps first provided a conceptual framework on the subject, argued that stigma is “an attribute that is deeply discrediting within a particular social interaction.” How and why

stigma develops is up for considerable debate, but some analysts see stigma as serving similar functions as such concepts as discrimination, racism, and, more generally, a hatred of “the other,” all mechanisms which, through fear, lend cohesion to the dominant group.

The abhorrence for all things AIDS was easily adopted when the disease emerged in North America among the gay community. While the actual origins of the disease remain obscure and controversial (several articles, including two found in the respected journals Nature and The Lancet have presented evidence of AIDS cases from the 1950s), the disease’s first well-aired act on the world stage revolved predominantly

around the infection of gay men in North America. Quickly, this translated into the notion among many circles that AIDS was somehow a gay disease. When the next major wave of North Americans to be hit by the epidemic was identified as intravenous drug users, many took this as further evidence that AIDS was a disease of immoral lifestyle.

This was not merely a view embraced by those on the fringe. Much of mainstream Christianity, Catholics and Protestants alike (with some notable exceptions), chose to frame the disease in this light. That same view was mirrored in the halls of the other major established religions of the world. Similarly, from a public health perspective, many governments have sought to ignore the growing epidemic, arguing that measures like abstinence and the prohibition of illicit drugs were sufficient and in fact more effective in curbing its growth.

Current U.S. policy reflects a view that “moral” behavior — abstinence, fidelity, and clean living — should be at the forefront of the struggle. Many other governments, including in AIDS-ravaged countries like South Africa, have taken similar stances. Meanwhile, here in Canada at the conference, fear was widely expressed that Stephen Harper’s government was headed down that same road. Undeniably, support for this position remains strong. In editorials covering the conference published around the world there has been significant criticism countering the “liberal” tone of many of the delegates. Newsday’s James Pinkerton suggests that, in relation to the issue of sex workers, “to attend an international AIDS conference is to enter a world in which traditional morality is conquered by political correctness . . . in the real world, we might observe that even if the stigmatizing of prostitution is senseless, it is also a matter of consensus.” Here in Manitoba, our own Winnipeg Sun carried a newswire article from Toronto-based commentator Michael Coren whose advice was clear: “stop fornicating.” Coren goes onto say that “it is truly horrible that Catholic teaching on condoms and sexuality is laughingly rejected by western AIDS warriors.”

THE EFFECT OF STIGMA ON TREATMENT

But the issue raise by many who are actively discussing stigma in relation to AIDS is not whether the behaviour that leads to infection with AIDS is immoral, but rather, what effect the stigma has in the fight against AIDS.

Prevention and harm-reduction strategies are the cornerstone of any public health initiative. But prevention strategies that focus on moral behaviour may actually be doing more harm than good. By establishing a dialectic of moral versus immoral, the argument naturally posits that immoral behaviour — presumably by immoral people — is the cause of AIDS. By extension, moral behaviour encounters no such problems. Prevention, then, lies in “right” action, and responsibility for such is centered squarely on the individual.

Not only does such a position do nothing to dismantle stigma, but in effect it clearly buttresses the notion that AIDS is a disease with a moral component. Hence the logic in proposed plans to shut down Vancouver’s safe injection site, a place where intravenous drug users can go to shoot up in a controlled environment with clean needles provided. Stop the immoral behaviour — shooting up in this case — and AIDS won’t be transmitted. The Harper government’s plan to shut down the facility met with sharp criticism at the AIDS conference in Toronto, where Stephen Lewis, the former UN Special Envoy on AIDS, called the plan “murderous” and “perverse.”

Likewise, stigma plays a role at other critical junctures in the campaign to stop the disease. For years, researchers have pointed out that the fear of social isolation has largely hampered AIDS testing. In sub-Saharan Africa, stigma prevents people from even visiting testing stations. And as William Rankin, head of the Global AIDS Interfaith Alliance, argues, “without HIV testing, an essential first step to treatment, years may go by while people who are infected transmit the virus to others. When individuals finally become ill and seek care, treatment as a prevention strategy has lost much of its potential effectiveness.”

And Africa is by no means alone in this conundrum. Health Canada’s most recent figures showed that researchers had found that there were no reported HIV/AIDS cases in Nunavut. While at first glance this could be seen as cause for celebration, Aideen Reynolds of the Pauktuutit Inuit Women of Canada states that “there’s a hidden epidemic among Inuit communities, for sure . . . at some point, if people start being tested and testing positive we do think there will be an explosion.” Indeed, the newest statistics available show that over 22 per cent of new HIV/AIDS cases in Canada were found among the aboriginal population, a hugely disproportionate figure. Reynolds goes on to argue that there are no cases only because very few people get tested. Just as Nunavut’s government has been reluctant to recognize the right to freedom of sexual orientation, there is a pervasive attitude in the North that AIDS is an “evil” disease.

For many years, those on the frontlines of the struggle against AIDS have punctuated the need for a social strategy. But if we return to Frank for a moment, his story reminds us that it is also very much needed on a personal level. Frank is alone because his disease has made him alone. Jonathan Mann, the physician who founded the World Health Organization’s Global Program on AIDS in the ’80s, addressed the United Nations back in 1987, saying that the final stage of the epidemic would be characterized by “stigma, grinding down its victims with shame and isolation.” For Frank, and many others, this is a living truth.