The Positive Side

Winter 2008 

Profile: A Voice for All

During the 13 years that Albert Martin has had HIV, he has learned that the voices of people living with HIV have a unique resonance. By creating Fréquence VIH and its website www.frequencevih.ca he has made certain that these voices can be heard loud and clear.

WHEN I LEARNED I WAS HIV POSITIVE, I had already developed AIDS. I had Kaposi’s sarcoma and my life expectancy was only a few months. It was one year before the combination-therapy revolution. HAART arrived just in time to pull my head above water.

In the beginning, when I spoke to my friends and family about what I was feeling physically and emotionally, their reactions often began with words like “You should…” or “If I were you….” Inside I was thinking: “How clueless!” How could they truly feel what I was feeling? I knew their intention was to reassure and encourage me, but how could anyone who isn’t infected truly understand what it is like to live with HIV?

SEVERAL MONTHS WENT BY BEFORE I JOINED MY FIRST SUPPORT GROUP. By the end of the first session, I left with the feeling that I was now part of a secret society — the society of people living with HIV. In a way I was proud to be part of it, proud to have been accepted into it. It’s far from an ideal society — a fact I continue to discover year after year — but it’s the only one that fits us. It’s a society that is prey to upheaval and internal fighting that is, in my opinion, the expression of the contradictions we carry within us.

My participation in support groups taught me the importance of listening to people with HIV/AIDS (PHAs), including those with points of view different from my own. I discovered how important it was to pay attention to experiences that I had not lived myself, as well as the stages of denial and acceptance that varied from one person to the next. There is no single experience of being HIV positive. There is, however, only one way to listen to these experiences: by imposing silence on one’s own experiences and listening without judgment or comparison.

Eventually I became involved in community work. I sat for several years on the board of CPAVIH (Comité des personnes atteintes du VIH du Québec), an AIDS service organization (ASO) in Quebec that officially closed in 2008 amid widespread indifference. It was during my time at CPAVIH that I came to understand how important HIV information is to people living with the virus and that they prefer to receive this information from ASOs.

For many years CPAVIH was the only ASO in Quebec and it gave a voice to PHAs through its many accomplishments, including its treatment and legal information services and its magazine, Le Point de VIH, which I contributed to. With CPAVIH gone, I believe we will come to realize — hopefully sooner rather than later — that HIV activism must find new ways to express itself.

I truly believe that HIV is here to stay for many years and we must collectively acknowledge who we are and affirm it. When I say affirm, I don’t simply mean stating who we are in the public arena, but also among ourselves as HIV-positive people. We must establish relationships and build bridges between ourselves and the groups we represent. In my opinion, we will have a better chance of being heard if we speak with a single voice. This is the only way to get our message across and it is urgent that we do so.

IT WAS THIS REALIZATION AND MY LONGTIME EXPERIENCE AS A JOURNALIST, SCRIPTWRITER AND NOVELIST THAT LED ME TO CREATE FRÉQUENCE VIH, a network whose main face is its website www.frequencevih.ca. The site is a mix of current news and in-depth reporting on HIV/AIDS, all in French. When the site was launched in 2005, there was no Internet site that focused on the reality of Quebec PHAs. Now, every week from Monday to Friday, there are stories about HIV/AIDS from around the world. This daily press review of general news about HIV/AIDS is unique in the French-speaking world.

We provide information and allow all PHAs to make their voices heard, regardless of where they live or where they come from. I am always surprised and moved to receive the feedback of forgotten PHAs living in villages in Quebec, Guyana or Lebanon — people seeking comfort in front of an anonymous computer screen. Fréquence VIH has become a place where people with HIV can feel at ease, can feel at home.

I find it atrocious that the section dealing with lipodystrophy places third on the list of the site’s most visited pages — more than 10,000 visitors during the past six months! I imagine the pain of these no-doubt isolated people who visit the site day after day in the hope of learning about a treatment that will free them from the ostracism they face.

I am quite proud of the fact that “Diane” (not her real name) — the HIV-positive Quebec woman accused and convicted of aggravated sexual assault for not disclosing her status before having sex with her ex-partner — agreed to share her story in an exclusive interview with Fréquence VIH. The organization supports Diane and COCQ-Sida in their appeal of the judgment. It is a major case for all HIV-positive people in Canada.

A year ago, Fréquence VIH started producing videos and, to date, has completed seven in partnership with other HIV groups — and more are coming. We have also produced more than 40 radio shows, presenting interviews with workers from Quebec and French HIV organizations and reports on pressing subjects such as lipodystrophy or criminalization. There are also numerous personal accounts from PHAs.

We have plans to open Fréquence VIH to other languages, for example, with a series of stories titled Si d’aventures en aventures (From One Adventure to the Next) written by HIV-positive Quebec youth and translated into Spanish. We will also have interviews in English (with French transcripts).

Fréquence VIH wishes to continue its role as spokesperson for those without a voice in the HIV community. We want the voice of HIV-positive people to be heard and to find its place in society. We wish to build bridges between the HIV community and society in general. Despite the empathetic ear of many HIV-negative people, PHA voices remain misunderstood and often incomprehensible for the majority of people who are not living this reality. They do not know what we are talking about and often do not want to know.

Every day I am outraged by this lack of understanding and openness, and it is one of the reasons why I never tire of fighting, either through my work with Fréquence VIH or my work as a writer. I doubt my most recent novel will ever find a publisher. The story of a doctor who is fascinated by patients who actively search to be infected by HIV will never be a bestseller — it is too taboo. But such behaviour exists, and we should talk about it. Why is there resistance to talking about all the realities of HIV, even within the HIV community? As long as these realities are suppressed or denied, Fréquence VIH will remind us of their existence. It is my hope that Fréquence VIH will continue to reflect the experiences of all people living with HIV, even long after my departure.

Photograph: Pierre Dalpé