As we mark another World AIDS Day, one gay poz guy and HIV advocate reflects on the evolution, and the importance, of ‘community’ in the ongoing struggle.
By Jeff Berry
‘COMMUNITY’ IS A WORD OFTEN bandied about at HIV meetings, conferences and gatherings, but it’s sometimes a loaded word that means different things to different people with its definition varying on the setting or context in which it’s used.
Community can be based on geography, a common history, or social, economic and political interests. Then there is the psychological sense of community, defined by “a feeling that members have of belonging,” that they matter to one another.
All of our various communities are in flux with an overall general increase in awareness of social injustices in our society, and the realization that positive change needs to occur. Some communities have recently come under attack, both literally and figuratively, in the midst of a very divisive political climate.
But even in the darkest moments, hope rises up – whether in response to the Pulse nightclub shootings, or in an effort to exert our power after the most recent presidential election.
WHEN I GOT A JURY SUMMONS recently, I spent a day with 41 individuals being questioned for possible service in a civil suit. I really didn’t want to be selected because I would have had to cancel a vacation, but as the day wore on I was fascinated by the process, and quite impressed by the knowledge and wisdom of the judge.
He kept stressing how we are the only country in the world in which civil cases are left to 12 members of a community to decide, after weighing all of the facts. He used the word “community” several times throughout the day, and after being in the same room all day with the others, sharing details about our lives, I felt a strong sense of community.
We were of diverse backgrounds, but we were together to work toward a common cause.
In July, I attended the International AIDS Conference in Durban. Shortly after my arrival, I was invited to participate in a demonstration against HIV criminalization. I had my chant memorized and my Stop HIV Criminalization T-shirt ready to go. The final speaker, Edward Cameron, an African judge and activist for AIDS and gay rights, stepped up to the podium to give the lecture.
“IT HAS BEEN 35 YEARS since the Western world was alerted to AIDS. The first cases of a baffling new, terrifying, unknown syndrome were first reported in the northern summer of 1981… These last 35 years since then have been long. For many of us, it has been an arduous and exhausting and often dismaying journey.”
My eyes started tearing up.
“Since this first report, 35 million people have died of AIDS illnesses – in 2015 alone, 1.1 million people,” Cameron said. “We have felt the burden of this terrible disease in our bodies, on our minds, on our friends and colleagues, on our loved ones and our communities.
“AIDS exposes us in all our terrible human vulnerability,” he drove home. “It brings to the fore our fears and prejudices. It takes its toll on our bodily organs and our muscles and our flesh. It has exacted its terrible toll on our young people and parents and brothers and sisters and neighbors.”
Then I began to cry.
“So let us pause, first, in remembrance of those who have died: those for whom treatment didn’t come in time; those for whom treatment wasn’t available, or accessible; those denied treatment by our own failings as planners and thinkers and doers and leaders; those whom the internal nightmare of shame and stigma put beyond reach of intervention and help.”
“These years have demanded of us a long and anguished and grief-stricken journey,” he continued. “But it has also been a journey of light—a journey of technological, scientific, organizational, and activist triumph.”
BY THEN I WAS SOBBING. It took all I could to suppress my emotions that came bubbling up to the surface from almost 30 years of living with HIV, and nearly a quarter of a century working in the field. It was as though someone finally gave me the permission to feel all that sadness, shame, neglect and anguish.
Cameron went on to highlight the stunning achievements to whom many of us with HIV owe our lives. I felt a true sense of community in that moment, and the sense that great things can be achieved when we all come together to achieve a common cause.
So the next time you hear the word “community,” think about how wonderful and amazing communities are, and the potential they have and what they can truly accomplish. Changing the world can seem daunting, next to impossible. But true change in our community starts with us, one person at a time. We only have to take the time to reach out, take our neighbors by the hand, and lift each other up.