What I learned from the powerful Jewish voices working within the AIDS movement

I am a survivor, a witness and now, it seems, a pioneer.

Living with HIV for more than 30 years qualifies me as a long-term survivor. During the course of those years, I became a witness, not only to the loss of so many friends and colleagues, but also to the remarkable advances in treatment and understanding of the underlying conditions that drive infection with HIV. I am a pioneer, because I find myself in the first group of “baby boomers” to face the challenges of living and aging with HIV.

Coming out to parents and friends as a gay man in my teens was manageable. Getting an HIV diagnosis in the early days of the epidemic was much more traumatic, and disclosure felt like coming out all over again. My mother died before I could tell her. I didn’t want to burden her at the time of her own illness, but I knew she would have loved me all the same. My dad didn’t like to talk about personal matters, but we maintained a good relationship for the duration of his life.

I was raised in a loving Jewish family in Ottawa, learned to read but not speak Hebrew, had a bar mitzvah and went to a Conservative shul on the High Holidays. Today, I attend a Reconstructionist congregation, where I find a welcoming community. For all this, I am grateful.

READ: LIVING WITH HIV IN THE JEWISH COMMUNITY

I worked as a Russian and French professor, then started a business for myself, but eventually I had to stop working when I lost my partner of 15 years to AIDS and my own health declined. I was able to support myself thanks to private insurance for long-term disability and slowly returned to work as a volunteer. By 1997, there were major improvements in treatment, and my health rebounded sufficiently to allow me to continue my work as a community advocate for access to treatment at the local, national and international level.

As a young man, I was “apolitical,” but as I joined the AIDS movement, I heard powerful Jewish voices around me. I read Susan Sontag’s essay, HIV as Metaphor, which taught me about the psychosocial origins of blame and stigma that are associated with disease, whether tuberculosis or cancer at the time, or HIV today.

I met Larry Kramer, an inspirational activist and hero who was among the first to organize the gay community in New York and demand that governments and the pharmaceutical industry pay attention to HIV. Like many, I was deeply moved by Tony Kushner’s play, Angels in America.

What have these voices taught me? They have taught me to value the concept of social justice over moral panic. I learned that if one of us is not safe, none of us is safe. HIV does not discriminate – anyone can get infected – but HIV today is more likely to seek out the marginalized and vulnerable among us. This includes people living in poverty, violent relationships, unstable housing, people with mental health and addictions, or those simply lacking education and social supports.

Social, cultural and economic determinants of health increase vulnerability to HIV. Preventing HIV transmission is not as simple as telling young people to use condoms every time they have sex when there are so many other factors that can lead to risky choices.

People over the age of 50 are seeing a rise in HIV infection rates, too, because many do not believe they are at risk. As Jews, we need to ask ourselves some difficult questions. Would an older Jewish woman or man living with HIV feel comfortable disclosing their status? Would they feel comfortable disclosing a different sexual or gender orientation? Probably not. While HIV may have become a chronic and manageable infection, unlikely to be transmitted when properly treated, stigma and discrimination remain pervasive the world over. Canada is no exception. 

READ: PANEL ON JEWS AND HIV SHEDS LIGHT ON LINGERING STIGMA

With that in mind, the Canadian Working Group on HIV and Rehabilitation has launched a project to educate providers working with seniors on how to talk about sex, prevent transmission of HIV and other sexually transmitted infections, and meet the needs of people currently living with HIV.

We still have a long way to go to destigmatize HIV in Orthodox Jewish and other culturally conservative communities where “gay” and “HIV/AIDS” are still considered by many to be taboo. Which brings me to the notion of tikkun olam. We can heal the world starting here at home by deconstructing the myths that surround HIV and looking at it squarely in all its complexity.

The good news is that we have started down this path. It’s a challenge all of us can and must accept. 


Ron Rosenes is a community advocate and consultant. In 2014 he received the Order of Canada in recognition of his volunteer work on behalf of people living with HIV.