This past week I had the opportunity to attend a gathering of over 50 HIV-positive individuals here in Los Angeles. The event was designed to honour those living and in some cases struggling with HIV or AIDS.
From the time I arrived the event just felt different from HIV events I normally attend. While there was a step and repeat, there weren’t many, three to be exact, photographers or even media outlets covering the event. Although it was held at a very nice hotel which featured a beautifully designed reception and dinner, noticeably absent were providers, advertisers, pharmaceutical reps, and all the buzz of celebrity. For once, this event was about people living with HIV or AIDS and right away it felt great.
The event was sponsored by six couples all of whom are formerly homeless and all living with HIV. They each worked hard to raise the money to put this event on. Let me just tell you, this was by far the best and most inspiring HIV event I’ve ever attended. manly because it was paid for and about people living with HIV. The only honours or tributes were from people living with HIV. This had nothing to do with raising money or celebrity. For once, it was simply about us.
Anyone who knows me will say that I’m a very strong advocate for allowing people to be heard in their own voice. For me there is nothing more powerful than a personal story told by the person who is living through it. Especially when that story is raw and is not spoiled, watered down and scripted in order to raise money for some organization and presented by some celebrity.
Every HIV event I’ve attended is about recognition for those who are paid to do the work they’ve chosen to do and is paired with some well know celebrity in order to get the public to care enough to purchase a ticket, but when you take a close look you will notice that people actually living, struggling and doing their very best to survive life with HIV or AIDS are absent. Ticket prices are far too high for them to afford. Those that are in attendance either work for the sponsoring agencies or are the individuals who have three minutes to share a very small, censored and cleaned up version of their story in order to make the sponsoring agency look amazing to its donors, board and the general public. It really has very little to do with those living with HIV. It’s simply about raising funds, recognizing celebrities for their paid acknowledgement and those in the field of HIV who have also been paid. Our stories and experiences are a very small part.
Now please don’t get me wrong. There are those who do amazing work for people living with HIV. There are also those celebrities who actually care. But HIV should always be about those of us living with HIV. We shouldn’t be an afterthought. Events for us should be planned and delivered with the same, if not more, attention to detail than those honouring people who have been paid or have chosen to work in the field. Our events should be just as lavish as those holiday and anniversary parties of the organizations who serve us. Not some high school gym or auditorium in some park with plastic table clothes and cheap food.
Mostly every magazine cover about HIV has a celebrity, elected official or someone working in the field on it. It’s as if our faces, our stories, our lives, our experiences are not good enough for a cover or a lead story. But the very reason why these people are able to even hold down those covers or get those awards and attend those red carpet, star studded, high priced events is because of the people who we will never see on a magazine cover, or in attendance at those events or receive such high honour and regard. Why are we no longer important?
It’s sad we have this illusion that everyone living with HIV is doing well and thriving. It’s sad that we very rarely get to hear or read about those we struggle to live their best life, remain in care, get into housing or overcome adversity in their life.
It was so inspiring, refreshing and encouraging to hear stories about struggle, hardships and survival from people living with HIV. It was powerful to be invited to hold space and honour each other along this journey. Seeing people cry and even shedding some tears myself because of feeling of validation and the fact that someone took the time, care and effort to do this for us. Why? Because we matter, our struggles matter, our stories matter, our experiences matter, our faces matter and our lives matters. Watching as people embraced each other, encouraged, comforted and even cheered for each other was a day I will never forget and one I wished we all could see more of.
HIV care should be about ALL of us. The stories we read should include ALL of us. We should hold down the covers, not celebrities. Our lives matter, our stories matter and we deserve the same respect and dignity as anyone else. This fight should always be about us.