On AIDS-activism, Stigma, and the Struggle for Change

26 June 2011

I wanted to write about Magid even before he became a star. At this moment I'll hardly be the first one to have written about him but at least now I can justify why I wanted to write about this young man from Alexandria other than simply having immense admiration and respect for his character.

I met Magid almost a year ago when we started working together through a civil society coalition, the Forum to Fight Stigma and Discrimination Against People Living with HIV/AIDS, of which our respective organizations are members. Magid is a 31 year old Egyptian man living with HIV. Now typically in most Arab countries that doesn't make for a star. People living with HIV/AIDS in Egypt have long been shun from society and harshly discriminated against. So bad was the stigma that never has anyone living with HIV been able to make a public appearance announcing their status. Which is precisely what makes Magid now a star.

Only a few weeks ago Magid stood up at a podium in front of a room packed with press and journalists and publicly spoke of the burden of carrying a virus not-as-deadly-as- the-world -originally-thought and begged the audience to take a moment to reflect on the myths and misconceptions that surround it. The press conference was organized by the Forum which brings together 14 different organizations that work on issues related to HIV/AIDS and the stigma and discrimination that surround them, in areas ranging from reproductive health, education, and media to human rights and legal aid. The Forum has benefited tremendously from the participation of Magid and that of others living with the virus, through the Friends of Life organization, the first NGO in Egypt for and of people living with HIV/AIDS. A year of collaborative effort finally paid off last month when the Forum launched its first two products: "Letters from Egypt" (pdf) a booklet gathering real life testimonials of people living with HIV/AIDS in Egypt and the stigma and discrimination they have to suffer, and for the more research-oriented reader, the study "Combating HIV/AIDS related stigma in Egypt" (pdf-EN) (pdf-AR) which offers a situation analysis and recommendations for advocacy.

By no means the only initiative working on HIV/AIDS related issues, this Forum seeks to more specifically tackle and zoom in on the problems of stigma and discrimination which have long hampered the AIDS response world over, and more so in our conservative, (and sadly lagging a few years behind the rest of the globe) Arab world. Columnist and writer, Dr. Khaled Montasser so eloquently says in his forward to the Stories Booklet "All around the world, HIV/AIDS has been unshackled from the fear and anxiety that surrounded it, and from any theories that people living with HIV deserved it…everywhere but in Egypt and the Arab world".

The press conference took place on 31 May, which according to Dr. Sany Kozman, the Forum's spokesman and long time HIV activist "is not December 1st"…obviously. If one chose to look past the bizarreness of the quote, one would quickly begin to realize and appreciate the tremendousness of getting the press to collectively cover a topic almost only ever mentioned in the Egyptian media on World AIDS Day, and probably then only citing statistics and figures, not so different from the year before, and maybe one bold journalist would throw in a story of someone “dying” of HIV for the "human touch". It is not too implausible then to claim that on 31 May 2011, in spite of all the political and revolution-relevant topics struggling for space on the media agenda, and despite the fact that it is not World AIDS Day, that on that day, a taboo was broken, HIV-related stigma was so bluntly put on the press agenda, and a star was born.

Magid's name was not on the day's schedule, so prior to the arrival of the press, no one knew they were going to be listening to the most genuine speech about stigma and discrimination from a person whose life is truly touched by their cruelty. He spoke not as a victim, but as an activist, a believer that no man or woman should be judged, mistreated or punished based on their health status, or otherwise. As always, confident and comfortable speaking out (perhaps in smaller more closed circles, but still) and condemning the state of affairs in the world of AIDS response in Egypt. If there is one fault in the way civil society addresses issues on which they work, it's their failure to involve those who are most affected by these issues, or doing so by showcasing a "victim" in an attempt to emotionally engage the audience. 

Stardom though, comes with a price, and Magid's public declaration of his HIV status would not be his fast-road to happily ever after and there is no telling how it might have brought on to him new waves of discrimination from those who surround him.  Nevertheless, his appearance was a timely and necessary cry for change for the way some estimated, according to UNAIDS, 10,000 people living with HIV in Egypt struggle to cope with it despite vast breakthroughs in prevention, treatment and care and in how society views HIV/AIDS elsewhere in the world.

Earlier this month, world leaders gathered in New York and renewed their commitment to intensify the global response to ultimately halt and reverse the epidemic. The 2011 Political Declaration on HIV/AIDS reaffirms that full realization of human rights and freedoms, fighting stigma and discrimination against "people living with, presumed to be living with or affected by HIV", and the role of civil society in sustaining national AIDS response are essential elements in the global response to the epidemic.

Despite this, the Forum to Fight Stigma and Discrimination Against People Living with HIV/AIDS and similar civil society initiatives remain excluded from the national AIDS response and their efforts will remain futile as long as policies do not address stigma and discrimination and as long as the AIDS response is not grounded in universal human rights. Change however, has a wonderful way of manifesting itself, and with enough will, it becomes inevitable. Magid sums it up, far better than I ever could, in his remarks in New York last April during the Civil Society Hearing that fed into the outcome of the HLM:
"This revolution in my country was not about HIV, yet, it created change for those of us who live with HIV. For the first time, we are no longer scared to disclose our HIV status. While we celebrate this fact – we also know that we have a long way to go, especially for people who are marginalized and stigmatized in society."