In Conversation with … Ron Rosenes

Ron Rosenes is a member of the Legal Network’s Advocates Circle and a past Vice Chair of the Canadian Treatment Action Council who has been working on HIV-related issues for more than twenty-five years. He was recently awarded the Order of Canada for his community work.

Ron Rosenes

How have your background and lived experience influenced your activism?

My academic background did not prepare me in any way to become an HIV and AIDS activist. I studied French, Russian and Latin growing up in Ottawa, and found the perfect teaching job out of university, at a CEGEP in Montreal. While I enjoyed being in the classroom, it was not what I wanted to do for the rest of my life, so I left and started a business venture with a friend. But coming back to activism, I may have always been preparing in some way to get involved in the HIV community.  There is a common thread in my work history – being a communicator. A teacher, a good one, should be a good communicator, and that’s not a bad prerequisite for community leadership and activism.

I led the life of a very active gay man who frequently visited New York City where I probably contracted HIV in the late 1970s. I had a confirmatory test in 1987, at a time when we were beginning to experience the full impact of HIV. I didn’t really become politicized in any major way until I got involved in HIV community work after I lost my partner of 15 years in 1991. I believe I would still be with Kimble today had he survived HIV and AIDS.

Feeling physically depleted after this difficult loss, I went to the AIDS Committee of Toronto (ACT) where a counsellor advised me to slow down if I wanted to live. This was the early 1990s, and we were losing tremendous numbers of friends and acquaintances. I couldn’t see very far down the road myself. Fortunately, I had a long-term disability policy I was able to activate, started volunteering at ACT, and eventually chaired the board at a challenging time of deficits and hard decisions required to make ACT look more like the people we were starting to serve.

I attended the 1996 International AIDS Conference in Vancouver, the year that triple antiretroviral therapy was announced and ushered in a period of greater optimism as mortality rates began to dramatically drop. I joined Louise Binder, who founded the Canadian Treatment Action Council (CTAC) along with Glen Hillson, and spent the next 14 years working to improve access to treatment and supporting community at international AIDS conferences. I worked as the Community Activist Liaison, immersing myself in global issues related to HIV. This role helped me to gain an understanding of the impact of the social determinants of health and the power imbalances they create that increase vulnerability to infection.

As HIV began to impact people living at the margins, I felt more and more that I was coming from a place of relative comfort and privilege compared to many people around me. HIV may not discriminate but it does seek out the most vulnerable in our society. As we now know, HIV is most prevalent among gay men, people who use drugs, newcomers from countries with high infection rates, and our First Nations communities. It disproportionately affects people whose human rights are often most in need of protection. There are still lots of biomedical issues but for many people living with HIV, the virus may not be first thing they need to think about on a daily basis. There may be a greater urgency to find stable housing, get work that pays enough to put food on the table, or perhaps get the drugs upon which they are dependent. They may be coming out of prison where they contracted hep C because there was no access to clean injection equipment. These are among the basic human rights that the Legal Network strives to protect. Through my own work at CTAC, I learned about systemic advocacy and the powerful role that people can play when encouraged and given the tools to tell their stories in their own authentic voices.

How has your activism changed over time?

I became more of an activist in the early 90s, at a time when many of our relationships with authority were adversarial. We had to make our voices heard to ensure that attention was paid to a disease that affected many people who were being stigmatized in our society. Over time, I found that building relationships of trust with people in positions of power got us into rooms where we could impact policies, drug development, and access to treatment. Today, we have less of a medical crisis, but stigma and fear are fuelling reliance on the courts to punish people for failing to disclose their virus to their partners. The law is not keeping up with the science and criminalizing HIV does nothing more than drive it underground. Rampant homophobia has the same chilling effect on HIV prevention in many countries around the world. For every step forward, it feels like we take two back.

How does it feel to have received the Order of Canada?

On a personal level, the recognition is wonderful; I was thrilled and surprised to receive it. I think it’s a great honour for those of us who work in HIV and for those of us who are openly gay. I don’t think that many Orders of Canada have recognized contributions from our sector and from people like me, so it’s an honour that should be shared by everyone in our community.

What are some of the greatest challenges that face Canadians living with HIV today?

Stigma and discrimination are still huge challenges. The messages around HIV are confusing: “Believe me, you do not want to get this virus. It’s no picnic. But, if you do, it’s no big deal, we’ve got a pill.” For too many people, poverty and other forms of social inequality can lead to HIV, and HIV all too often leads to poverty.

Why is the Legal Network’s work important to you?

The Canadian HIV/AIDS Legal Network is one of the greatest assets we have in our community to ensure that HIV continues to be viewed through a lens of human rights and social justice. The imperative of human rights for all is as simple as that old maxim: “If one of us is unsafe, then none of us is safe.” The Legal Network is here to safeguard our individual rights in a society where we continue to face stigma, discrimination, prejudice, systemic racism, violence against women, and post-colonial attitudes. We need the Legal Network to ensure that our fundamental human rights are protected in law. This is the foundation of the work we need to do, every one of us, to shift the attitudes that fuel the “isms” that sadly still prevent too many of us from leading fulfilling lives.

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