Bloodlines: Can you describe your reaction when you rst found out you had HIV?
Francisco Ibanez-Carrasco: It was nearly thirty years ago. I was in my early twenties. I felt nothing, then I was terried. I could see gay people dying around me. I then sort of denied it for a couple of years, and I started working for the AIDS movement in 1989. I describe this in more detail in my memoir Giving It Raw, published by Transgress Press in November 2014.
Bloodlines: What programs have been the most helpful during your treatment?
FI: A combination of good clinical care, access to drugs, AIDS services organizations, government disability, and, very significantly, mental healthcare. [Treatment] all takes time to put in place: there are waiting lists, mistakes, a very few disagreeable people along the way, black ice patches of stigma here and there, but it works. Patients do amazing work putting together a “map” of this ever-changing territory. If you move, different provinces do things differently. Friends, extended family, and caregivers are a constant. My work as a researcher and teacher, including my work with Aboriginal folks in British Columbia and Manitoba, also helped me see another side of things—other realities, spirituality, and concepts of sexuality. These are not programs, but activities that I have integrated intellectually and in my soul, and they have surely made the road good to travel.
Bloodlines: Has HIV education done anything to change the stigma of infection? Were you the victim of stigmatization?
FI: Stigma, along with shame and fear, are layers of skin we live with. We get assaulted by stigma, shame, and fear, either in deed or by our perception of ourselves, and we use it against others with or without our awareness. I say that along with other negatives and positives, forces, stigma, shame, and fear are components of our human condition that we must harness and use for positive ends. I think feminism, the sexual liberation movement, the HIV movement, immigrants, and Aboriginal people are some of the groups that have contributed through day-to-day, on-the-ground education to combat stigma, shame, and fear. We would not be where we are without us doing the minute work day aer day, in every meeting, and in our own intimacy. And there is much road yet to travel.
Bloodlines: Treatment has changed drastically over time. Can you describe your experience with treatment?
FI: The closing chapter of Giving It Raw is about taking one pill a day and how this has changed from taking AZT—which I did!—and weird complementary and alternative medicine to the new state of treatment informed by good clinical, biomedical, and social science research and good public health policy. One pill a day gives you a strange illusion of normalcy, but the fact remains that a life with HIV is a life as a drug user, licit or illicit. I learned this from Aboriginal women and men in the Vancouver Downtown Eastside.
Bloodlines: How has the move to normalize HIV affected people’s attitudes?
FI: It seems that we have become more brazen. It smells like liberation, but I am nervous about imagining HIV as a completely manageable chronic disease. It is episodic and requires a great deal of community and clinical work, and not only pills, but rehabilitation services like occupational therapists to deal with years of work. Or physiotherapists to work with the emerging long-term side effects of using pharma drugs for years on end. This is why it is important for me to be an adjunct lecturer at the Rehabilitation Institute of the University of Toronto and conduct research in rehabilitation in the context of HIV. You can see I am ambivalent; I think some medical systems are ready to mainstream HIV, I think some are ill-prepared. The rest of the community and family systems are patchy; you can find the necessary services here and there. It’s part of the general problem of trying to maintain an accessible and responsive medical system with well-prepared healthcare workers in it for those with chronic medical conditions.
Bloodlines: Where is HIV/hepatitis now? Where will it be in the future?
FI: This is a big question. I know where HIV is for me now. It is in my blood and contained. It remains to see what my mental and physical health are as I move to the other side of 50. But I make my share of mistakes; I can get complacent. And now I am dealing with hepatitis C, and this has been almost another coming out process, the third in my life: gay, HIV-positive, and now hepatitis C-positive. We never stop learning and confronting our tricksters.