I’m surrounded by strangers and TV cameras and bright lights as far as the eye can see. Somewhat unlike a typical lecture, there’s a certain energy about the people in the rows and rows of wooden chairs. The excited buzz of conversation around the room is gradually replaced by a rhythmic clapping; each of three parts of the room carrying a different syncopated beat. African drums are struck at the front of the room, and in call-and-response, we all begin to sing.
This isn’t the way I thought we’d communicate about a disease that currently affects millions of people every day. I expected an evening of solemn statistics and heavy hearts. What I found was a celebration of common humanity, when on Wednesday night I attended a World Aids Day event at Hart House, presented by the Stephen Lewis Foundation.
As many of you probably know, Stephen Lewis was, from 2001 to 2006, the United Nations Special Envoy to HIV/AIDS in Africa. I first learned of his incredible work in 2005 or 2006 when a high school teacher encouraged me to read Lewis’ Massey Lecture, Race Against Time. I was able to see Lewis speak during the following year at a public library, and was captivated by his passion to not lead from an office, but from the ground. In perfect contrast so many volun-tourists and 2-week-prophets that like to speak about Africa, Stephen Lewis exhibits an authentic commitment to reaching out and genuinely caring for other human beings without a hint of self-righteousness.
The event was opened by a stunning spoken word poetry performance by d’bi.young titled “Dear Mama,” telling the story of a Canadian daughter sharing news of her HIV diagnosis with her mother at home in Africa. Tears trickled down my face as she pleaded, “mama I want to come home / only you alone can love me / but ya have to promise / that ya won’t tell nobody / about my shame.” Through all of this – as one of the fortunate few to have a life and social circle untouched by HIV/AIDS – I was given a glimpse into the pain and hope of others. The speakers at the event emphasized that scientifically, we’re rapidly approaching new ways of preventing and reducing risks associated with the transmission and progression of HIV. They reminded us that medical treatments, however, are not enough. It takes the care of a cohesive community to create the psychosocial structure in which health-consciousness is established and the physical and emotional needs of infected individuals are met. A woman who had been a social worker in an HIV clinic for 23 years was sitting next to me and in our conversation, asked me why I was at the event. My simple response – “to listen” – felt trite and inadequate. I felt like it was wrong of me to be in this special, almost sacred place and to have nothing to give.
Maybe, though, there is instead something I can take, and keep, and nurture until it grows. As I listened to poems and stories and dramas and songs about this world so far from my own, I started to see connections. I worried about how the stigma attached to HIV treatments in Zambia inflicts a similar scale of suffering and violence that the stigma attached to mental illness does in Canada. I saw the way that dance and music helped children rise up and find reprieve from some of their suffering that resulted from personal or family experiences with HIV/AIDS. It made me think about how arts – music, dance, poetry – can become a valued, collective expression of the passions of a community, rather than something rehearsed, performed, and judged. I wondered what radical honesty might look like in the face of our suffering – to dance to the songs that move us, to write poetry about the weight that we each carry behind us, and to write and speak fearlessly and honestly about our feelings not merely toward our circumstances, but to the people who comprise our worlds.
I’m grateful for the health and community I’ve been granted, but to know how lucky I am makes me just feel like we all need to keep asking for more. More stories, more healing, more compassion, more dances, more love. As I sang out under the bright television lights, I felt, for a moment, less alone than I had in a very long time. This need to feel a part of a community is by no means exclusive to those suffering from life-threatening illnesses – it is a fundamental human essence. And so why do we deny this to one another? Where does our compassion hide when we’re not singing? And why do we ever stop?
I like to think of all of the ways we could care about each other with a love like that. Even if we aren’t doctors or researchers, I feel like these moments of open ears and minds and hearts are underappreciated ways in which to make life just a little softer for others, and almost certainly, for ourselves.