It’s the first day of the conference but there have already been so many pre-conferences, meetings, receptions, social events, amazing showing of The Normal Heart, plans, surprises and information sharing. I’m sure I’m not the only one thinking – not “it’s started!”, but “is it over?”
The most pleasant events have been the surprises – randomly running into Luna (twitter: @legendaryluna) in a hotel, having drinks with Cesar Cadabes like it hadn’t been over a decade since the last time, finding out the latest policy concerns from the incandescent Donna Crews (AIDS United), lunching with a researcher I respect a great deal, seeing the wonderful George Ayala and meeting the irrepressible international participants from the Global MSM Forum, being inspired by the Global Network of People with HIV/AIDS (in all their organized chaos), and seeing collaborators and partners in my own growing up process like Pato Hebert. Yes, I am tired, but invigorated by the simple kindnesses – hugs from people who knew me when, Donna giving us a ride home from a remote reception, the laughter shared over coffee or a lovely meal.
Then there’s the other side – the snarky attitude from people I know. From strangers, this doesn’t bother me; sadly, I halfway expect it. My skin is tough. But from people I’ve worked with and shared a cocktail, snarkiness (whether through sarcasm, overt insults or covert silences) drags me down. It’s too easy to be nasty at an event like this… maybe it’s a defense about feeling so small in such a large background. I don’t really care. I’d rather be part of a conference experience that thrills, troubles, encourages growth and change, and allows for us to be glorious in this still stigmatized field.
And we are still stigmatized. This is not a field where people will be well-paid; this is not a field for people who want to save “innocent victims.” More and more, this is a field about dealing with people living with HIV, about dealing with those most marginalized in our societies (who tend to be impolite, unpleasant and remarkable), about struggling through difficult, heated discussions to ensure the latest advances in HIV treatment and prevention are available, accessible and acceptable to all populations.
Today is the Latino/Hispanic HIV Community Research Forum. It is heartening to see so many where this is their first International AIDS Conference. The participants range from community members to service providers to students to academics to government to concerned advocates. It’s the beginning of most of their conference experiences, and some may feel intimidated at such an event, especially when this session’s dialogue revolves around research – a discussion that can easily distance from the grassroots level and from the underlying passion that brings people to HIV.
Some of us have been in the field longer than others. I encourage us to be kind with each other, to introduce newer people to a vibrant community of HIV/AIDS. I was lucky enough to have leaders like Dennis de Leon, Doug Yaranon, Juan Rodriguez, Vince Crisostomos, George Ayala, Ronald Johnson, Robert Vazquez, Phill Wilson, Paul Kawata, Julie Scofield, Mary Anne Chiasson, Cornelius Baker and Frank Oldham to welcome me. Not all of them survive today, but through these people’s inspiration, conversations, friendship and forgiveness, my HIV diagnosis did not end my life. This is the gift I would like to give: an HIV community that may not like each other, but can work together to build stronger places for us to play and live, even if we get an incurable and contagious life-threatening disease.
Written by Dr. Andrew Spieldenner