5 Questions with Jaydee Cossar, PAN’s Manager of PLDI and the PLHIV Stigma Index Project

Jaydee is a former staff member of PAN.

Jaydee joined the PAN team in the Spring of 2015, as Manager of the Positive Leadership Development Institute, and Manager of the People Living with HIV Stigma Index project.  

What first piqued your interest in the HIV sector?

I remember learning about HIV at the same time as everyone else in my generation. Magic, Ryan White, Greg Louganis, names which best express the HIV/AIDS cultural zeitgeist of the time. I remember thinking “that would never happen to me”, because I was a “different kind of person,” and couldn’t possibly get HIV. As a young gay male in the 1990s I was terrified because I had limited information about the HIV/AIDS epidemic besides what I saw in the media. This fear and lack of knowledge was augmented by the sensationalistic and stigmatizing public education campaigns on HIV/AIDS which emerged in the early years of the epidemic. These early public health campaigns used fear and disgust to spur behavioural change. The supposition here: there are good guys and bad guys. The bad guys get HIV. One need not make grand theoretical postulations; plain and simple, these ads came with the unintended consequence of stigmatizing affected populations. Stylistically these ads used scary music and images, including a few gory photos of anal cancer and Kaposi’s sarcoma, juxtaposed against once beautiful gay men succumbing to HIV wasting syndrome. Cue Tom Hanks in Philadelphia, or Eric Roberts in It’s my party, two examples in a long line of 1990s HIV/AIDS movies, where the only escape from HIV was either to voluntarily end your own life before the disease rendered you unrecognizable to those you love, or waste away into a shell of your former self. My knowledge of HIV came to me in a climate of fear and stigmatization. In the late 1990s when I became involved with Youthquest! Lesbian and Gay Youth Society of British Columbia, the society endeavored to break the isolation of queer youth. There I saw an open, honest and real way of talking about sexuality, safer sex, and HIV/AIDS without fear. My time at Youthquest! taught me that education was the way to fight the epidemic and this piqued my interest in the HIV sector.

What role do you think HIV/AIDS research plays in the “real world”?

“Real world” means inspiring a shared vision to make change, and research that challenges the ideologies of the past and present. Research with a methodology that ensures people living with HIV act as change agents. Research that encourages the hearts of PLHIV to lead! Remarkable strides in biomedical research have changed the global fight against HIV/AIDS, but in no way is HIV over. Yes, this may be particular to the western world, and perhaps this fact doesn’t hold true for all of us, but one can comfortably conclude that “HIV is no longer a death sentence”. HIV cured?  No!  The development of HIV medications, which attack the virus and keep the disease in check have changed the discourse and turned the cultural spotlight away from HIV. Yes, people will live longer but let’s not forget we still haven’t ended the stigma suffered by so many people living with HIV. Simple formulaic lab tests do not account for the human complexity of the epidemic. Humans are not Petri dishes. The role HIV/AIDS research plays in the real world, and especially the work we do at Pacific AIDS Network, is to understand, quantify, and qualify the hidden side of the epidemic. If that means measuring stigma through the voices of people living with HIV, or quantifying their experiences in housing, community-based HIV/AIDS research gives a “thick-rich” description of the unknown psychosocial “real world” realities of living with the virus.

How do you engage the community in your work?

How I actively engage the community is to make sure all voices are heard, concerns are met, and that HIV positive people are at the helm of the decision making process, not passive actors filling token roles. The personal is research, and research is the personal. Disengagement from research and the personal, psychosocial side would only happen because a cure has been found. I’d like to think that will be a reality someday, but that day is not yet here.

HIV is my everyday life. Who says so? The four pills I take religiously every morning. They are a daily rite of passage, an act ensuring I stay undetectable and medically well behaved. The pills are a visceral and temporally specific reminder of how privileged I am. Privileged to live now, 2015, not with the body-changing ARVs of the early 90s. I can never disengage from the history of the HIV community, and this happens to be the same community I study, volunteer in, and work for. Living day to day with HIV stigma marks my full-time engagement and 100% inclusion into a very diverse community. I can never become unbound to my community and thus its specific subjectivity. However, this fact doesn’t mean I can speak to diverging specificities and the unique struggles all people living with HIV face in their daily lives. Nor can I accurately speak to the defiant resiliency so many in the HIV community have had, in the face of almost insurmountable social, cultural, and medical odds. These places of the “unknowing” must be measured and thus engagement means involving the HIV community in research from start to finish.

If you had unlimited funds, which area would you invest in?

First I would invest in the area of self-care and buy new Bentleys for all my hard working colleagues. We did say unlimited right? Really, I would invest in research that could be 100% responsive to the HIV community – funds that ensure the full inclusion of all HIV positive people and their allies, into academic research from start to finish. Funds to make sure what gets said about the HIV community is an accurate reflection of lived experience. I would invest whatever someone needs to be successful, and to have a voice in their own community. I would invest in promoting the successes of HIV positive people and allies who are leading the way in new and innovative community research methodologies. I would invest in the future and make sure the past was documented.

If you were able to choose, what is the natural talent you’d like to be gifted with and why?

The greatest moments in my life, so far, have been the self-actualizing realizations of my own strength. It seems to me that a natural talent is something you are naturally good at without thinking about it. I don’t know if I would ever want to do something absent of thought. When I heard “privileged is never having to think about how you are privileged” it made so much sense. We have to wrestle with the things we are not good at, and mark the places of privilege we occupy. We have to interrogate the places of the unquestioned and suffer moments of awkwardness. If we stop thinking about improvement, if we stay static of thought, we do ourselves a disservice. Therefore, I wouldn’t ever want a natural talent, because I wouldn’t want to stop feeling so grateful for everything I’ve worked for and everything I’ve received.