This article by Jennifer McPhee first appeared in The Positive Side, a publication of CATIE, here.
Une version française est disponible ici.
When I call mixed media artist Shan Kelley, 37, one evening, at his home in Montreal, he apologetically asks to reschedule our interview because his 16-month-old daughter has a cold and is up past her betime. Later, he admits that prior to his HIV diagnosis five years ago he hadn’t envisioned having a child. He actually surprised himself by suddenly asking the doctor who diagnosed him whether he could still father a child. “I think what I was really asking was, ‘Will I be able to go on?’” he says.
Of Hope and Sickness, 2013
Kelley’s art often combines storytelling and photography and is almost always autobiographical and intensely personal. His piece Of Hope and Sickness consists of two photographs with passages of writing explaining their significance. Kelley’s mother snapped one of the photos just days before her son’s diagnosis. Kelley is sick, lying on his mother’s couch, as he did for several weeks, feeling exhausted and incapacitated by an illness that had not yet been named. He is sleeping under a white duvet, with his head resting on a white pillow. Four years later, Kelley took the other photo upon noticing his newborn daughter lying in the same position, on the same couch, also under a white blanket, with her head resting on a white pillow.
Kelley explains that watching his daughter sleep made him contemplate the innocence of that moment and “a passage in life that I never thought I would live to see, a moment I imagined would never be possible given my HIV diagnosis.” Capturing this dichotomy between illness, on the one hand, and hope and innocence, on the other, “serves to frame my entire relationship with my own mortality, perseverance and hope.”
Your work has become much more personal over the last several years. Is this because of your HIV diagnosis?
Yes, partly. My post-diagnosis reality was unfamiliar and frightening but it also became a catalyst for tremendous growth and discovery. I’ve overcome the fear of producing work that is largely autobiographical. I’m completely unashamed and open about being HIV positive. And I find that by using my own voice in my work, I can introduce an empowering, nuanced counter-narrative to this era in which privacy and agency remain so threatened and tenuous. If I can’t control my own privacy, then perhaps I can mitigate the messaging around HIV and frame it in my own words.
You write that you felt “naked, exposed and under oppressive surveillance” after your diagnosis, as if your sexuality and private life had become fair game for scrutiny. Can you explain what you mean?
In my life, I’ve had two great points of intense vulnerability: recently, when my father died and when I was first diagnosed. The healthcare system wanted to understand and trace how I became HIV positive, which proved impossible, as I couldn’t pinpoint a person, place or time. Healthcare workers wanted to dissect my lifestyle, behaviour, choices and promiscuity. They not only wanted answers but I think they perhaps also wanted my repentance. The elephant in the room is that HIV brings to light human behaviours that are uncomfortable for people to acknowledge, much less accept. But I’m unapologetic about who I am.
What does it feel like to experience stigma?
I love meeting people who are uncomfortable with HIV. I’ve experienced some difficult situations, particularly when my partner’s circle of friends found out about my status and wanted to “protect” her when we first started dating. One person said outright that he would never feel safe with me near his children (even though he didn’t have any at the time). It’s become easier for me to stay composed during such incidents because I understand that judgment and fear come from ignorance and misunderstanding. These negative stigmatizing views are regrettably still often reinforced by media and outdated ideas of an HIV bogeyman.
Postcards 1 and 2
I really like Postcards. What were you trying to explore with it?
Thank you. Postcards is a series of printed aluminium signs placed in public spaces. The text on each sign describes a distinctly uncomfortable negotiation of sexuality and HIV. I wanted to explore how our physical spaces and geographic landscapes are also charged with a hidden emotional landscape. I might feel a sense of lightness when I pass a park where I shared a fantastic kiss, or conversely, a sense of unresolved weight when I pass a corner where I once received bad news. My hope was to interrupt public spaces by introducing some of my very private moments that occurred there.
Can you talk a bit about your decision to have a child?
I became a father post-diagnosis. Because of my undetectable viral load, I had no trepidation about creating a child without in-vitro sperm washing and without subjecting my HIV-negative partner to PrEP (pre-exposure prophylaxis). Yet this decision was unfortunately met with incredible apprehension and resistance from people I had expected to support us—from veteran HIV practitioners to medical support staff. Everyone seemed to tow the fear, to the point of absurdity. On more than one occasion, my partner was even told by health professionals to reconsider our relationship altogether.
Immediately after our daughter was born, many people congratulated us and celebrated her negative status as a great achievement. As if she would be worth less to us if she had been born HIV positive. Would we then have failed as parents, as humans?
In Growing Concern (right), there’s a photo of a baby in a crib with the words “What Will You Teach Your Children about AIDS?” on the wall beside her. How will you teach your child about HIV?
I’m raising a radical. There will be no “papa is sick”–type discussions, but there may eventually be some “papa is sick of apathy and is working on dismantling the AID$ industrial complex.” My daughter will be like a stateless warrior and one day she will raise her sword to fight as well. I will give my child everything I have, no less. I’m not interested in transmitting anything that isn’t based on truthfulness, and I hope that my transparency will guide her to form a unique understanding of the world through the lens of a person living with HIV.
Shan Kelley lives with his partner and daughter in Montreal. To see more of Kelley's work, visit www.shankelley.com
About the author: Jennifer McPhee is a freelance writer whose work has appeared in Chatelaine, The Globe and Mail, Childview and numerous other publications.