Like many in HIV support and care communities around the world, I am reflecting on last month's World AIDS Day and its slogan "Getting to Zero." What would it take? A terrific editorial in the New York Times by Francoise Barre-Sinoussi and Adeeba Kamarulzaman noted that science could make it possible, but stigma looms so large that science is overshadowed. Stigma of marginalized groups (and I would suggest, all people with HIV) makes getting to zero more than a health issue. It is an intricate mix of government policy and action, health care, social support, and social determinants of health.
I am part of the HIV support community at Positive Women's Network (PWN) in Vancouver, BC. We've been providing support and education to women with HIV and their communities since 1991. Since its formation, PWN has been driven by infected and uninfected women working together.
The positive women who were part of the formative group believed this partnership would be strongest, as uninfected women could do the work when HIV+ women had to tend to their health, or were too scared to speak publicly for fear of recrimination -- loss of children, jobs, homes. Right from the start, that formative group knew stigma was a central issue in living with HIV. Unfortunately, it hasn't changed all that much. Stigma and discrimination are frequent topics of conversation in our member drop-in. It happens in health care, social services and in personal relationships.
Many of our members are of Aboriginal descent -- not a surprise, given that Aboriginal people are disproportionately affected by HIV. Aboriginal people make up about 4 per cent of the Canadian population, yet they are 8 per cent of people living with HIV. Of those infected, women account for 49 per cent of Aboriginal people living with HIV. This compares to certain areas of Africa, which is the part of the world people most often think of when it comes to HIV/AIDS. A cynic might argue with my comparing this stat to an African nation -- if Aboriginal people are a small percentage of Canadians, how can this be comparable to a whole country's population?
Although Canada is an amazing country in so many ways, it has a history of racism, abuse, and betrayal of Aboriginal people. Take one example -- the residential school system. Children were removed from their communities, alienated from their Aboriginal cultures, sexually and physical abused. Its effects have left generations of people with layers of health and emotional damage, including alcoholism, drug use, multi-generational sexual abuse and depression. Alcoholism and drug use shouldn't be surprising coping mechanisms given the extent of damage that's been caused. Sexual abuse is tragically cyclical, and depression follows suit. The residential school system has had effects on cultural unity, health, and literacy, which has affected education and employment opportunities.
So let's talk about getting to zero, for just one young Aboriginal woman. Does she have clean running water? Some people don't, even here in Canada. Does she have a roof over her head? On reserve or off, securing safe housing is an issue. Does she have nutritious, affordable food? Does she have access to sexual health education that is positive and not shaming? Will she learn about her body in age-appropriate ways? Will she learn how it functions and how to care for it, including safer sex information? Does she have information and the resources to break free of the abuse that generations of her community have suffered? Does she have the support and strength to challenge gender norms that put women second, especially when it comes to sex? Does she have the encouragement to buck peer norms should her friends start experimenting with drugs, which can lead to unsafe sex? For many women and men, the answer to these questions is no, and the damage continues, putting people at risk for HIV.
Stigma shadows discussions about sexual health, mental health and wellness, drug use, and definitely sex itself. When it comes to fighting the stigma in the way of Getting to Zero, we need personal, national and international action. It demands governmental action on policies and programs that put people at-risk before and after infection. For personal action, it means challenging oneself to think about the larger social determinants that put individuals at risk for HIV. Take your judgments off "those people" and focus it on one person.
Let me end with something we can all undertake -- kindness. If you can do nothing else, be kind as you think of this deadly disease. Kindness provides necessary momentum in this huge fight.