Subscribe to this blog's feedWith the reelection of George Bush, I think it paramount that more people consider becoming activists. Reality tells us that the next four years will be a challenge for everyone. It is becoming increasingly crucial that the HIV programs and services, that we need to survive, begin to be adequately funded and properly administered. We can no longer assume anything regarding HIV services. Ryan White re-authorization is coming in March of 2005 and we must make our needs known to our representatives, both at the state and federal levels. The way to ensure that this transpires is by increasing the number of AIDS Activists.
Activists are not some big mystery, no secret clubs or special handshakes. They are simply people who actively participate in supporting a cause. They can be found in just about every walk of life, because activists are grown and developed. The care and feeding of activists can take many forms, but the result is always the same: creating the desire in someone to affect change. So maybe you have considered at some point, becoming an activist? That's a personal decision, but one I encourage you to consider, and to that end, I offer three people and events that helped to inspire me and shape my activism.
First, there was Chris. His was the face I saw one morning, sitting in my hospital room, while I was recovering from my sero-conversion illness. He introduced himself and told me he was there, because I needed him to be. He told how he had lived with HIV for a number of years, and he knew that I would do the same. He counseled me on the journey on which I was to embark, assuring me that I would make it and offered his friendship as a companion on that journey. He was the first person to reach out to me, after I tested positive. Where I saw myself as something less than human, he saw me for the scared man that I was and offered unconditional support. It did not matter to him, who or what I was, only that I was in need of a friend and guide. Even with the challenges he faced, he gave of himself freely, to me, a complete stranger.
I began a friendship with Chris, but it lasted only 7 months. The year was 1985 and there were no drugs to treat HIV and he was losing his battle with the disease. A once stunning man, he had been ravaged by AIDS, but his spirit was never diminished. Sadly, I barely got to know him before he was taken from us. His was the first AIDS vigil I ever attended. Regrettably there would be many more vigils to follow; yet it somehow seemed fitting that his would be my first. Chris was the first person that I lost to AIDS and it was because of him that I first decided to give of myself to others.
That is because Chris showed me how; by sharing his mere existence with others he could be so inspiring. The simple fact that he had lived with HIV for a number of years was enough to help me realize that I was not going to die from HIV, at least not anytime soon. Chris is why I share my longevity with others. He showed me how important it is, for the newly diagnosed, to see people like me. It's not me personally that matters, it is what I represent: someone living and thriving with HIV. Chris helped me understand the role that hope plays in living with HIV and for many, my existence represents that hope.
I always look for that expression that comes, when I tell someone of my years of living with HIV. The look that reflects their realization that if I can do it, then they certainly can. Most probably it's the same look I had on my face, when I first met Chris. Chris taught me how one man could affect incredible change, one person at a time
Then there was Grant. He had the most beautiful emerald green eyes I have ever seen. You knew the eyes were the windows to his soul, because his just radiated. Grant succumbed to many OIs, ranging from Kaposi's Sarcoma to CMV and PCP, but you would never know it from talking to him. I swear he would come to group with his lesions uncovered, or his pic line, there for all to see, as if they did not exist. You could see the ravages his body had undergone, but he acted like it was just another day. He wanted to know how you were and how your health was. Never worrying about himself, he was the consummate caregiver, to all those around him. He certainly did not act like someone who was dying of AIDS.
At first, it was really hard talking with him, as I looked at the dozens of KS lesions that riddled his body. Or watched him medicate himself and then clean his pic line during a support group meeting, like you might clean your glasses. At times I even wondered if he was bordering on dementia, but he proved to be wise far beyond his years.
We worked on a number of projects together at our ASO and he was a long-time member, as he had survived for almost 4 years with HIV. So I asked him how he did it. It seemed to me he acted like he did not have HIV, and that is exactly what he told me. "HIV is a disease that I have and I treat it as such, but it has nothing to do with me or who I am". I asked him about his seemingly indifference to his side effects and OIs, around others and he just smiled: "When you watch me clean my pic, you are watching me manage my disease. The pic is part of my treatment and nothing more. If I let myself become defined by my illness, then what do I have left? I want you to remember me for who and what I am, not for what I suffer."
We lost his beautiful soul two months after that conversation and I always remember Grant, for who he was and never because of what he suffered. Grant showed me by example, that I was so much more than my HIV infection. That even amidst great suffering, you can still reach beyond yourself to touch others.
Lastly, is my fondest recollection, from of all places, a Black Baptist Church in Detroit. Members of our ASO had begun going to any place that would have us, to speak about the ravages of HIV and its effect on the minority communities. We were not too sure how to reach the Black community, but we knew that we must try and the churches, being the focus of that community, seemed the logical places to start. So there I was, a gay white male, with HIV, talking to a bunch of ultra-conservative Baptists. The year was 1987 and the Black community in Detroit was sorely in denial about HIV and homosexuality in their own backyard. They were the two words that were never spoken, for fear of acknowledging their existence. Yet HIV was ravaging the males of that community.
So, sheepishly I gave my spiel about the good, the bad and the ugly of living with HIV. I described the challenges and how family and community support were so critical to survival. I implored them to be more accepting of the issues that faced their community and encouraged them to take actions to address those needs. I tried to express to them, the pain of being ostracized by the very institutions that have the greatest influence on their members: their church and their family. I wanted them to understand the pain that their denial was causing their children, the damage it was doing to their community.
You'd have thought I was from Mars. Granted I was a little apprehensive and it might have just been my perception, but I don't think so. The hatred and intolerance that seemed to permeate that church was palpable. Everywhere I looked while talking, I saw looks of disgust and rejection. Undaunted, I completed my spiel, and then rushed to gather my belongings because I longed to be any place but there.
As I am leaving, a small woman approaches me. She stands there for a moment, and then she grabs me and hugs me as if she would never let go. Upon releasing me, she looks me in the eyes and says: "Thank you for helping me to understand what my son is going through." Believe me when I say, there is no way that you could have experienced what transpired and not have been changed. I often wished that I were able to thank her, as she had given me something beyond measure. She had shown me, that even when you feel dejected and that all of your attempts are in vain, you never know who might be affected. Change can still arise from seeming defeat.
After that exchange, I never looked back. I had truly found a passion.
So how do you grow an activist? Are there any special needs they have? No, not really. That's because we are all activists, some just more so than others. Each time you speak up about something, for whatever reason, you are an activist. Activism can be as simple as donating money or clothes or as involved as serving on a Board of Directors, lobbying legislators or maintaining this website.
My choice to become an activist was relatively simple, because it just seems to come naturally. I have been very fortunate, in that many times I am successful in reaching out to others to help them share a vision, because the vision is the key. If we can share the same vision, then the battle is already half won. While we might disagree on how to achieve that vision, we still know that we will work in concert to bring that vision to fruition. That is an important ingredient of activism: sharing a vision. We do it everyday.
Some visions are grand like world peace, yet most probably unattainable. Others however, such as adequate HIV services funding, can sometimes be accomplished much easier than you might think. Activism generally achieves results in small increments, for that is how change usually occurs. Yet the only constant in life, is change. So you could be the catalyst for great change. But you will never know unless you try.
I became an activist for the simple reason that I could. Something propels me, in addition to the obvious sources of lost friends or the enormous needs of the HIV community. I derive great fulfillment from helping others. AIDS activism deeply interests me, benefits the community and myself and it is the right thing for me to do. I never forget that I have been very fortunate, to walk though many doors held open by others and I can think of no finer calling than to carry on that proud tradition.
So I encourage you to find that activist within you. Reach beyond yourself to affect change. Find a vision and then be prepared to move both heaven and earth to attain that vision. Find your passion and let that passion feed your being. Give of yourself to others, however you might, because it is something that will give you many things, but never any regrets.
