Together, We Can Be the Change We Need
The following letter to the editor appeared in the New England Blade newspaper (vol 18, issue 04) dated September 10, 2008. It was written by Mark Forry, Program Manager at the MALE Center :
As the Program Manager at the MALE Center, and on behalf of my co-workers, I would like thank the Blade for covering our Town Hall Forum, on Tuesday August 26th. For many of us working daily in the fight against HIV, it has become increasingly, and at times frustratingly clear that this epidemic no longer sits at the forefront of discourse in our GLBT community.
As I stood in front of the crowd Tuesday night, I was excited and moved by the number of people in the room. Seeing people take time out of their busy schedules to come together reinvigorated me and the work that I do at The MALE Center.
When we decided to host this event, our first concern was would this just be a room full of our colleagues. And while concerned representatives from a number of AIDS service organizations where present, I am pleased to report that the number of community members, both HIV positive and HIV negative, was greater than the number of my colleagues. On that point alone, we considered the event a tremendous success.
The voice of our community is invaluable to the development of effective strategies to end this epidemic and to advance the health of gay and bisexual men. I want to commend those brave individuals who spoke of their own lives, their truths that make their stories so powerful and so compelling. That Tuesday evening was an incredible start to what needs to be an ongoing conversation. A conversation about what we as both individuals, and as a community, can do to fight back against this epidemic.
One point that many members of the community raised is somewhat of a mixed blessing. On one hand, it acknowledged the work that so many have done to provide those living with the virus with encouragement, hope, and comfort. The fact that HIV is considered by many to be a manageable chronic infection is something we should be telling people. Slowly and surely, research has given us some power and control over this disease. Men and women with HIV are no longer standing in the shadow of fear that was cast over our community so many years ago. People are no longer forced to face HIV alone and unarmed.
That point came with the warning that, perhaps we have not done enough to let those uninfected see just how much of a struggle living with HIV can be. Community members wanted to know, “Why don’t you tell people that HIV medication gives people diarrhea?” “Why don’t you tell people how hard it can be to get a date and what it feels like to be rejected for being positive?”
Those questions get right to the core elements of our struggle as public health providers. How do we walk the fine line of encouraging people living with HIV to be strong and live full lives while managing to tell negative guys just how hard it is to be that strong and live that full life?
I couldn’t help but ask myself, “Are we doing a disservice to negative men by not showing the real faces of HIV?” Is the reason that infection rates are rising due to the fact that people living with HIV are doing just that, LIVING with HIV?
Fifteen years ago, while our community mourned seemingly incalculable losses the norm seemed as if everyone was using condoms. Today, people seem less concerned with taking risks because they can just take pills. Where is the outrage that people still have to take pills? Where is the compassion for those who have taken so many pills over the years that they are running out of pill options due to mutated strains and a virus that doesn’t give up the fight for their body?
The day after the Tuesday night meeting, I was speaking with a friend of mine who dropped into the Center. As someone living with HIV he says it’s manageable. When I pressed him further, looking for his definition of the term, he said “manageable, it’s just that, ‘manageable’”. Don’t people want a life that is more than manageable? Manageable is work, time, commitment and challenge. Shouldn’t we do everything we can to make sure that people have a life that is more than merely manageable?
We have the power to make lives so much more than “manageable”. If we come together in this fight, there is nothing we cannot do. Our community has shown such incredible resiliency. When there were no meds, or developmental meds were languished in bureaucracy, people laid down in the street until the silenced voices were heard. When our brothers had no family to turn to in their final days we provided the love, compassion, and dignity they deserved.
We cannot forget our most important asset in this fight is our community, and friends. We have the strength. We have the power. All we need to do now is harness collectively our desire to end this epidemic. I ask all of you to join us at the next Town Hall Meeting Tuesday, 16 September at 6:30. Let’s get angry! Let’s get active! Let’s make the changes we want to see a reality!
Mark Forry
Program Manager/MALE Center
