Standing out and standing strong: Replacing stigma with compassion (AIDS 2012 reflection)

YAHAnet intern Chandra McIvor writes about her experience at AIDS 2012

Attending the International AIDS Conference in Washington this July was truly an inspirational experience. Not because of the fancy venue, the glitz of Washington’s city lights, or the high profile celebrity names. It was an inspiration to have met each and every one of the people who stopped at our booth, sharing their stories, their strength, and their light. Never have my eyes been so open to such an amazing global community of caring and loving people.

In life we have moments which truly stop us in our tracks. Moments which pull us within ourselves and spit us back out into the world with a higher consciousness of our humanity, of our collective being, and of our responsibility to each other.

One of the first people who brought me to such a moment was a quiet, shy, beautiful Hispanic woman in her early 20’s who offered up her tattoo to appear in the YAHAnet Wall of Hands. The infamous red ribbon wrapped around a palm tree was new and intriguing, so I casually inquired of the significance. Out of this timid woman came a message of resilience and strength. Monsoon storms and hurricanes can blow most trees away, but not the palm tree. It’s flexible. It can bend all the way to the ground, and when the storm is over, it straightens back up again and is actually stronger as a result.

As an HIV positive woman, her resilience during tough times is about being flexible like a palm tree, accepting rather than breaking.

During the opening ceremonies, Phil Wilson of the Black AIDS Institute gave a speech which brought me to tears in the presence of such strength and faith. I encourage everyone to watch it. At the 15:57 mark, Wilson states as his number two recommendation for ending the AIDS Epidemic, “HIV positive people must come out.”

“We want our families to love us and support us, but they cannot love us if they don’t know us. I know it’s too dangerous for some us to come out right now, but some of us can, and if we do, others will be able to join us.” Wilson ends his speech at 24:11 with “The day will come when this epidemic will be over, and when it does, it’s important for them to know that we were not all monsters, that we were not all cowards. That some of us dared to care in the face of it, some of us dared to fight because of it, and some of us dared to love in spite of it.”

I was overcome with emotion. My heart swelled with pride for those who faced shame, stigma, fear, and hate and chose to prove that the face of HIV is a human one. Who were the people emotionally equipped for public disclosure? Who were the people able to give their friends and communities the chance to know them in their entirety? Who were the people strong enough to fight the social roots of the HIV epidemic? Who were the people tough enough to truly educate?

Then I met an average, everyday guy who looked and acted exactly like a close friend of mine. I instantly felt like I had known this person forever as the guy who shows up to every party making the social butterflies swarm. With pride he shared his story to a session. In order to combat stigma, to educate and uproot social stigma, he revealed his HIV positive status to his friends and his community through Facebook.

*gasp* Facebook!! The all-powerful medium of social marginalization or empowerment!

I wondered, would I have such courage? To put myself in his shoes, to feel the anxiety of bearing such rawness of my humanity, it was terrifying. Especially through the medium which covets the highlight reel of one’s life. Gosh, I’ve panicked over a posted photo that reveals a bulging zit on my face! I’ve had friends frantically texting me, begging me to take down a photo because their arm looked fat or their face looked awkward!

Courage is not for those in some far-off land we’ll never know or encounter. True bravery comes from the ordinary person who takes an extraordinary leap of faith. In a sense, this inspirational person from Denmark is my hero.

Another new hero of mine, One Tough Pirate (aka Bob Bowers), is a true inspiration and role model, not only for the AIDS activism community but the world in general. To put this man into words, into sentences, is completely impossible. So let me just say, if there were more people who could bear their entire being with such grit, strength, rawness, sincerity, and love, the world would have no fear, no hate, and absolutely no judgement.

Elton John said the following words in a speech he delivered at the International AIDS Conference, and I would like to end with them. For nobody lives by these words more than the people I have mentioned above, and the countless others I had the absolute honour of meeting over the week. It also sums up nicely the message I would like to leave readers with, and the truth which I came to understand during my time in Washington.

“The AIDS disease is caused by a virus, but the AIDS epidemic is not. The AIDS epidemic is fueled by stigma, by hate, by misinformation, by ignorance, by indifference. Shame and stigma prevent people from getting help, from protecting themselves in the first place.”



“We have to replace the shame with love, stigma with compassion.”