On Sunday, May 20 I'll be stepping into my sneakers and joining 45,000 walkers on a 6.2-mile walk through Central Park. It won't be a leisurely stroll. It will be a purposeful walk by committed participants, soldiers in the battle to fight HIV/AIDS. In 27 years AIDS Walk New York has raised more than half a billion dollars for GMHC (Gay Men's Health Crisis) and more than 40 other AIDS service organizations across the nation. According to GMHC, it's the East Coast's and the world's largest fundraising event. This year's walk coincides with the 30th anniversary of GMHC.
Like almost all those who walk, my reasons for participating are deeply personal. I feel as if I've witnessed the war against AIDS on the front lines. Let me tell you why.
When I came to New York City to work in the mid-'80s, the whispers about a new, killer virus were already reaching a crescendo. I was a television reporter, and one of my camera crews refused to accompany me to the GMHC offices. They would not go unless they were covered from head to toe in hazmat suits. Some insisted on wearing masks. Rumors swirled that the AIDS virus was airborne. And even people who should have known better were afraid. Just a few months earlier, a female friend had invited me to her apartment for coffee in the morning. Usually she served my java in a coffee mug, but that morning she handed me a plastic cup. "You know, Chuck, with all the rumors going around, you can never be too safe," she said with a smile. I didn't smile back.
If you were perceived to be gay, you were suspect. Fear and ignorance were prevalent. In 1989 the late CBS newscaster Andy Rooney delivered a commentary that sparked outrage from people living with HIV/AIDS. As Emmy-Award-winning former television producer Shelley Ross blogged on The Huffington Post on Oct. 4, 2011:
I always believe you can't judge a person by their worst moment and that certainly applies to the über talented Andy Rooney whose broadcasts offer nearly five decades of snapshots for a cultural yearbook. But there is a reason to revisit his, a December 1989 CBS Special "The Year With Andy Rooney," when the popular broadcaster, then 71, offered this:There was some recognition in 1989 of the fact that many of the ills which kill us are self-induced. Too much alcohol, too much food, drugs, homosexual unions, cigarettes. They're all known to lead quite often to premature death."It wasn't as if they didn't bring it on themselves, " he added in his inimitable puckish style.
Gay leaders raised their voices in anger and disbelief. Rooney was suspended -- temporarily. He later apologized for his comments.
Today we know that AIDS is not a moral condemnation against one group of people. AIDS is a disease, and it has spread all over the world. In Africa women and children still grapple with the virus. Medications are not always readily available, and many people still die.
I sat at the bedsides of friends in their final days. Their faces were emaciated, but their eyes were still alive with hope. Among them were lawyers, doctors, reporters, public relations managers, all contributors to society. They were not pariahs; they were human beings cut down in their prime. Even among long-term survivors there can be complications. Last year I lost a friend after his kidney stopped working. He was on the list for an organ transplant. He never made it.
In black and Latino populations there are alarming new cases of AIDS. The message of prevention and treatment is not getting through. And there are the children who live with AIDS. They still need our help.
When I walk on Sunday I will walk to honor the memory of those who passed away, and to raise money for resourses for those who still live with HIV, and for their caregivers.
I'll be joining AIDS Walk New York realizing that many who used to open their wallets and give generously are suffering a kind of "AIDS fatigue." There is a sense of apathy. With retroviral medications prolonging the lives of people living with HIV/AIDS, there's a feeling that the crisis may be over. But AIDS educators say nothing is further from the truth. "Every nine and a half minutes, there is another person infected with HIV in the United States," says Dr. Marjorie Hill, chief executive officer of GMHC. "One in five Americans is living with HIV and they do not know it." I spoke with Hill, the passionate leader of one of the world's most influential HIV/AIDS organizations, in an interview especially for this piece. "African Americans in general make up 14 percent of the U.S. population but represent 50 percent of HIV cases," she told me. "So we have in America 1.2 million people living with HIV, and 50,000 new cases every year." She paused for emphasis, and her voice rose in anger: "We should be outraged," she says. It is obvious to Dr. Hill that the message of prevention and treatment isn't reaching the people who need to hear it most. That is why she believes fundraising efforts like AIDS Walk New York are more important than ever. "Government programs for AIDS have been cut in half," she says. "There are so many people we need to reach."
Dr. Hill's commitment and sense of outrage reminded me of the late Dominican actress, attorney, and AIDS activist Ilka Tanya Payán. Payán worked in the legal department of the same organization Dr. Hill leads today. She was a big supporter of the annual AIDS walk -- and of prevention and treatment programs in minority communities. In 1993 Payán became one of the first Latino celebrities to publicly disclose her HIV status. She contracted HIV from an infected lover. We became friends in 1995, when she agreed to participate in a reading of a play I had written, Deal. The play is about a Bronx school teacher infected with AIDS. In the play, Payán's character keeps her diagnosis secret because of the stigma associated with the disease in her community. "I am the face of AIDS," I remember Payán telling me. "If have it, anyone can get it." She died a few months later.
"So many people think it's over, that they're not at risk," continued Dr. Hill. "We are not investing in prevention and education. We all know we have to struggle to find prevention dollars." Dr. Hill says African Americans and Latinos are disproportionately impacted by HIV/AIDS. "And 11 percent of new cases are people over 50," she says. As commercials tout the benefits of Viagra, she says, "there are some doctors not counseling about HIV amd AIDS." As the number of new HIV cases climb, the need for fundraising events like AIDS Walk New York becomes more critical, Dr. Hill says.
On Sunday, I'll be joining the Keep a Child Alive team, one of 40 AIDS service organizations that will benefit from money that is raised. Keep a Child Alive provides AIDS treatment, care, nutrition, and support services to children and families affected by HIV/AIDS in Africa and India. According to KeepaChildAlive.org, 34 million people worldwide are infected with HIV/AIDS, and 30 million have died. The website reports that 16.6 million children have been orphaned by HIV/AIDS worldwide. One of my fellow walkers on this team is Ian Jopson, who had already raised an astonishing $16,650,000 just days before the event. "I was written up in a blog last year with five other people and was asked for my 'title' or what I'd like to be listed as," says Jopson. "I asked to be listed as human being, in an attempt to point out that you don't have to be anything other than human to care and be involved." He adds that he has a particular reason for walking with the Keep a Child Alive team: "I think people with HIV living in the developed world, while not easy for many, get a lot of assistance. I choose to walk to try to help (those) who literally cannot do anything to help themselves, people living in extreme extreme poverty trying to manage this condition."
Each of the 45,000 walkers has his or her own personal reasons for participating. "There is so much stigma still surrounding HIV and AIDS after 30 years," says GMHC chief financial officer David Fazio. "Even in the most tolerant communities, people cannot be completely open and honest about their HIV staus for fear of rejection and judgment," he adds. "I participate in AIDS Walk New York because I believe that someday we'll live in a world where people will look beyond our differences, like diseases, ethnicity, or age."
For others who walk, HIV strikes a more personal chord. "I participated in the AIDS Walk in the '90s, and then I stopped doing it for no reason," says Osvaldo Perdomo, who is marching with the Friends in Deed (FID) team. "I just thought I did my part at the height of the AIDS crisis, and I continued sending my donations to AIDS research and several HIV/AIDS organizations. Things changed drastically. After I learned about my AIDS diagnosis at the end of 2004 and was put on long-term disbility, I thought I was going to die. I was very scared of the future outcome. I went to the LGBT Community Center, Gay Men's Health Crisis, and Friends in Deed looking for support dealing with my new reality. I attended weekly support groups, weekly drawing lessons, workshops, seminars, met with my therapists, etc., all with the hope I could learn about this virus and receive the support I needed. They have taught me to live in the moment and to enjoy living life breath by breath."
Perdomo continues: "I began feeling a little better physically in 2009, and I thought I could probably do the AIDS Walk. I did it with a group of friends. We were a 10-people team, and we collected around $7,000. Since then, I have been doing the AIDS Walk with Team 'Friends In Deed.' This year our team has nearly 100 registered walkers, and we have contributed over $170,000 to AIDS Walk New York from 2009 to 2012. This is my way to show appreciation, give back, and collect funds for FID and GMHC to help keep their doors open to continue providing assistance to people in need of support." For Perdomo, AIDS Walk New York is a kind of therapy. "It helps me keep my mind, body, and spirit evolving and moving in the right direction," he says. Participating in AIDS Walk New York has also inspired Perdomo to give back in other ways. He curates an annual show at New York's Leslie Lohman Museum of Gay and Lesbian Art. If features works by men and women living with HIV/AIDS.
As for me, on Sunday I'll be wearing a special T-shirt emblazoned with the words "In Memory of Christopher J. Harris." May 21 will commemorate the 16 anniversary of Christopher's death from complications due to AIDS. He was only 32 when he passed away. Christopher was the nephew of my high-school classmate Coralee Harris. The T-shirt was first worn by a participant in the Boston AIDS Walk of 1996. It has been worn by others in several AIDS walks around the country since then. "Even when he was at his sickest, he gave back," says Coralee. She explains that Christopher volunteered for AIDS organizations in the final years of his life.
I am also marching to honor the memory of friends and AIDS activists like Ilka Tanya Payán and Tom Morgan. He was a New York Times reporter and former president of the National Association of Black Journalists who battled heroically against the disease. I'll be walking and carrying others in my heart as well: Rafael Rodríguez, a talented photographer who passed away last year; Bill Flaherty, a model; Kevin Grew, a friend who was the life of the party and always had a kind word to say about everyone.
And on Sunday I will be more than a participant. I will be one of the many marchers living with HIV/AIDS. It is the first time I am admitting this in a public forum. It was a tough decision, but I feel the time has come. For those of us who live with this each day, it is more than just a walk. It is an opportunity to bear witness to an epidemic we have lived through and overcome. We have also survived the stigma and the shame. We have not been made weaker by the disease. We have been made stronger. And as survivors we know HIV/AIDS is not over. It is not over until the message of prevention and treatment reaches far and wide. It is not over until we can say HIV/AIDS is over itself. And that is why I am walking on Sunday.
For more information on AIDS Walk New York, visit aidswalk.net/newyork.