Symbiotic Synergy : AIDS Activism 15 Years Ago

by Gregg Rowe

It is with immense pride and honour that I wish to extend my congratulations to CPAVIH on its continued existence after 15 years and it is with mixed emotions that I have been asked to contribute a historical viewpoint of CPAVIH. Every action and manifestation that CPAVIH has participated in is a significant piece of your history no matter who was instrumental in setting the wheels in motion for the activism to commence. Therefore, recognition should be given to every employee, every member of the Board of Directors, and most importantly, every volunteer who has passed through the Grande Salon, the doors and who have been infected or affected with HIV/AIDS.

I find it ironic that the sole survivor of all the co-founders of CPAVIHis an Anglophone. And this Anglophone is recording the predominately French history in the crisis of a pandemic. I also cannot believe that it has been 15 years since I co-founded one of the first organizations in Québec to deal with above all the discrimination towards not only the gay community in general, but the ostracizing of all HIV + living people. A lot of progress has been made, but that will not erase the many deaths that took place before we found our voice. This is a brief testament to that era.

In what was known as the Grande Salon, on ironically a street called Hôtel-de-Ville, donated to us by the local municipal government, community space was obtained for a mere dollar a year for rent to an organization known as CSAM, which was actually born out of a ideology based on the Anglophone organization called MARC-ARMS(later to become ACCM.

In this Grande Salon people living with AIDS would drop by, have coffee and share their stories about how they were dealing with all the new issues of living with this chronic illness. The original ‘outcasts’ as we called ourselves consisted of Serge Lajeunesse (First Board President), Herbert Guindon (Vice-President), Pierre-Luc Delorme (2nd Vice-President), Claude Lachapelle (who became CPAVIH's indefatigable Executive Director for ten years), Patricia Towell, our first women on the board of directors and myself.

With the support of Dianne Ampleman as our lawyer (Legal Clinic) and Dr. Sylvie Vezina as our advisory doctor, we were ready to incorporate the name. (Later, two very valuable people would join our resources that would enable us to fight from the inside and we need to acknowledge these ground-breaking works done by Christopher Cockrill and Kalpesh Ozo.)

We were a team of diverse people, each with their own qualifications and ideas on how to move forward, but what held us back in the beginning as usual, was the incorporation of the organization and to be recognized by the federal and provincial governments. This was our first crash course of many in running a community organization on a volunteer basis.

We all meet in that Grande Salon every Monday night, at Les beux lundis, for companionship and support. And to plan. We were getting angrier as time passed by and our patience was running out. To put yourself in this time period of the pandemic my case history reads like most of the treatment received by other people who were diagnosed with HIV back in the early 1980’s.

After divulging my status to my employer, I was whisked off to a business lunch that found me signing documents with too much fine print to go over in forty-minutes. Upon examining them later on, I had signed over all my medical and insurance rights with the company that had just ‘laid me off for health reasons’ with no opportunity for recourse.

Within weeks, I had lost my job without insurance, had been thrown into the bowels of society by a lover who no longer wanted me (although I can guarantee that he was the one that infected me), had been asked to leave college for fear, not that I would contract something from the other students, but that the students might contract something from me, had been placed on social assistance, and had been given six months to die – so go home and ‘tie up your lose ends’.

All at the age of 27.

My future had crashed on me in a matter of weeks and I had no where to turn: until my counsellor suggested I hang out at CSAM, where I discovered the Grande Salon.

My reasons for getting involved into CPAVIH was two-fold: (1) I wanted to fight the injustices against people living with HIV/AIDS and (2) I needed to do something with my life besides sit at home and think about dying.

I cannot say that it was an easy transition to go from a student/worker/contributor of what was expected to me by society to a screaming activist demanding change to improve the quality of not only my own life, but the lives of all those infected with HIV/AIDS. I was now unemployed and a ex-college student with too much time on my hands thinking about death. Because I became a part of the furniture at the Grande Salon, the guys thought it might be useful to put me to work to take my mind of my diagnosis. By placing me on an all-Francophone board of directors not only woke up my intellectual mind, it created a passion in me that still continues to this day.

And it happened one day in that Grande Salon. When our group of ‘outcasts’ decided that they were not going to be looked down anymore by the people who were receiving money to help them better qualify their lives. With a careful strategic plan we overthrew the Board of Directors at CSAM and demanded change: that the new services at CSAM were to help people directly improve their quality of lives. With a majority vote reached, the CSAM Board of Directors was dissolved, the Executive Director fired, and staff dismissed, the voice of the person living with AIDS was now front and centre and nationwide media blitz appeared across Canada.

CPAVIH finally was an organization and opened right across the hall from the same organization that was delivering them services on paper, the Grande Salon becoming the Suite Royal, the room was renamed in honour of Yves who had dreamed of an organization like CPAVIH before he passed away and the militants came out of the closet. I cannot say that this was easy for both organizations, sometimes they would see eye to eye on some issues, other times each had their own agenda which ensued in heated debates between people living with HIV and non-HIV administrators.

It was a difficult time to reach a consensus, one side accusing the other of not understanding their needs and issues, the other side accusing us of not letting the administrators do their tasks. I find that there is nothing wrong with this, as long as the advancement to the cause is forwarded and not stagnated in paperwork and bureaucracy. Dialogue between organizations, bureaucrats, administrators and individuals not only opened up, some people began to hear.

CPAVIH has been instrumental in winning many battles in the fight with the all the discourses surrounding AIDS as well as represented themselves in the community to be also artistically supported. Who can forget the teaming up with ACT-UP with their manifestations on St-Catherine for the pharmaceutical companies to release their drugs earlier, or against AZT (the killer drug of the 1980s because of its potency) or the most famous action in Montréal in 1989 – the manifestation of interrupting the International AIDS Conference at the Palais de Congrés because its extraordinary costs to register for the event closed the opportunity for people living with HIV/AIDS to participate in the very issues that were affecting their lives.

CPAVIH,together with ACT-UP and other organizations, if direct action was needed, were there in rain, shine, and snow. CPAVIH became the voice of the people living with HIV/AIDS in Quebec.

Sometimes there was difficulty with the voice, particularly what language. The original founders have always claimed that CPAVIH is the voice of all people living with HIV/AIDS in Quebec, that if you are HIV, you are automatically a member and that your voice counts. Even to this day, co-founder or not, I believe that I belong to CPAVIH as much as CPAVIH belongs to me.

CPAVIH was never envisioned to be a ‘gay-only’ organization by the original co-founders: the demographics and the needs at the time dictated that the first respondents to the crisis was the gay community. To break away from this image was difficult at times, individuals from other minority groups accused the organization of not doing enough for them, that gays were more inclusive in the organization than other groups and for a long time CPAVIH was perceived as a gay organization. I am hoping that the articles I wrote and the advocacy I did for women, children, straight men, bi-sexual, and trans-gender clients back in the 1980’s through CPAVIH will remain a part of history that the organization was trying to deal with all issues of HIV/AIDS and yes, it may have been administrated by a predominantly gay administration, but we were watching all aspects of the virus in all affected groups.

CPAVIH has made me the person I am today. It gave me the opportunity to learn about diversity, the chance to learn that I could be a leader in a community that was ostracized by the majority of society.

At 27, I had no administration skills to run an organization let alone sit on a Board of Directors, yet after two years of self-learning I could write and submit a budget to hold what would become another historical event at CPAVIH.  The opportunity to have 121 people living with HIV from across Canada together for one week-end in Montreal to open up a Canadian National Network of People Living with HIV/AIDS 1990). To be sitting in a hotel conference room in Montreal with 121 representatives, all who were HIV+, was a moving event.

There would be more moving events. My responsibilities at CPAVIH were rewarding. Not only was I in charge of the Accountability Dossier, sat on national and international boards, was the representative for the Anglophones/Allophones within CPAVIH and CSAM, the organization’s accountant, and devoting my time in helping to set up the First National Conference for Aboriginals and HIV/AIDS(1991) in Canada, I had an interest in art therapy and its healing benefits that I saw happen with participants in workshops that I had examined.

CPAVIH became for me a place to hold artistic events that spoke of the pains that we were going through as we lived with this pandemic. At least once a month, I brought in an art show, produced a play, or just held a social evening. So it was without doubt that when I heard that the The Names Project AIDS memorial Quilt/La courtepointe de l'espoir was making its Canadian debut, I knew that CPAVIH needed to back this project. So strong was I for this project that I set up the first office in Québec and was delegated by City Councillor of Montréal, Raymond Blaine and Parti Quebeçoise Member of Parliament, Andre Boulrice to be an Ambassador to Canada at the Last International Display of the Quilt (1991) in its entity in Washington, D.C.  to this day still remains the host organization to this important historical event.

We all had our projects, our dossiers, our agendas, each of us contributed to the success of in our own way. Each member of the board had his own responsibilities according to his/her experience on the outside. My experience as an accountant enabled me to keep the organization’s financial records up to date on a full-time basis. Any extracurricular activities I had planned through CPAVIH would have to be accomplished after the accounting was done. So my days were 14 to 18 hours long, because if I attended a manifestation or rally during the day on behalf of the organization I still had to go and do my regular task at the office after.

Yet it was exciting and alive, while you were surrounded by death. Manifestations were common, and the symbiotic synergy through the community was overwhelming. People were dying and we were fighting for our basic rights as human beings: access to medication, access to employment, access to housing, access to going to the bars without being frowned upon by our own in the community.

I will never forget my coming out at the Grande Salon. A few board members were asked if they would like their photograph published inside a pamphlet to help promote CPAVIH. Three people came forward. Raymond Berger, Patricia Towell and myself. When deciding upon the poster to accompany the pamphlet, the Board of Directors decided that one of the three facial images would be used. And they wouldn’t tell the three of us which of us they would be putting on the poster, that the unveiling of the poster would come at the same time that the pamphlets were printed and ready for distribution.

Three weeks went by and we are heading over to the Grande Salon for our Monday social evening Les Beux lundis. Upon entering the foyer, before you enter the Grande Salon, one must pass through a door. As I walked in, I was taken aback by the decorations on the wall. Plastered and taped to the four walls were posters, side by side, running the lengths of the walls all around. Staring back at me was myself. In red and in quotation marks ‘Living with HIV/AIDS’.

I have accomplished more than anyone could in their live. I have survived child abuse in all four manners: sexual, emotional, physical, and psychological. I have prepared budgets and grants for over twenty years to better the quality of lives for people living with HIV/AIDS. I have fought the injustices of society for all people infected and affected by this pandemic. I have hosted Christmas dinners from three people (another project started at the Grande Salon one year when I was homesick for my family, an impromptu Christmas dinner) to a hundred and twenty-one participants last year. I have met dignitaries, princesses, politicians, and travelled the world and yet one thing remains.

I am a person with a voice. And I used it. Through the experience, I have met my surrogate family, all linguistics aside. I have opened my eyes to diversity and I have met a mosaic group of people. I have seen symbiotic synergy and have been unconditionally loved by many that I have helped. And for this, I would not trade anything for.

HIV gave me a marriage in life, one without the possibility of a divorce, one that as a partner we have to learn to co-exist with one another.

HIV gave me activism, a passion, a fire : a phoenix rising. Activism gave me a life to look forward to and an education that is invaluable. It also gave me a sense of belonging that I had otherwise lost when I was first diagnosed.

To come out and say ‘I’m living with HIV’ and have my picture plastered all over Québec in the bars, CLSCs, saunas, medical offices, and hospitals was proclaiming my voice in the francophone community that adopted me because I was a person. And that is all that we were fighting for in the beginning. To be recognized as a person and having a voice. Thank you CPAVIH for allowing me to have my place in society. And for allowing me a voice.


I cannot close without thanking my fellow co-founders. Without them I wouldn’t be me today. They taught me much more than I can give back to them, the education I received from all their qualifications put together is worth more than a university degree. It is this mixed emotion that I spoke of in the beginning of this article: true friends are irreplaceable, you may find other friends but everyone is unique. It is these qualities that made CPAVIH shine, the uniqueness of the individuals who were fighting for the cause.

So on your 15th anniversary, think of where you have been, where you are, and where you would like to go. I can attest that changes can be made if enough people were complacent enough. The organization rests upon that history. Be proud. Move forward. And remember who your citizens are: all people living in Quebec that are HIV+.

Gregg Rowe
September 11th, 2003