Melinda Tuhus Photo
In commemorating World AIDS Day in New Haven, Charlotte Burch said caregivers are important, but there’s a key ingredient missing in the fight — more people like her.
“I’m on a lot of the committees” related to HIV/AIDS in the city and region, said Burch, who’s been living with the disease for 15 years. “The presentations I see because I’m a consumer — that has given me strength and helped me realize I could get better. And we need more consumers to come to the meetings.”
She’s pictured above in the lunch line in the basement of United Church on the Green, after a service that took place upstairs Wednesday afternoon to commemorate the 22nd annual World AIDS Day. She kept wiping tears from her face as she spoke.
About 75 people attended the event, where a proclamation from Mayor John DeStefano was read touting a 40 percent reduction in AIDS cases in New Haven over the past 13 years. Click here and scroll down for more data on New Haven’s HIV/AIDS profile.
Volunteers passed out cards urging everyone to get tested for HIV, saying that an estimated 1.1 million Americans are living with the virus, but a fifth of them don’t know it.
Regalado Ortiz (pictured) was wearing one of the themes of the day on his shirt. He testified almost inaudibly about his 31-year journey through HIV/AIDS.
“At first I was ashamed,” Ortiz said. He learned to accept himself, “and my family accepts me more,” he added, and broke down crying. A companion in a wheelchair next to his comforted him.
“The creeping cynicism amongst our fiercest warriors and advocates and the sometimes apparent apathy of those who think that the HIV/AIDS crisis is behind us threatens to thwart our progress,” said city Community Services Administrator and keynote speaker Chisara Asomugha (pictured). A pediatrician and an ordained minister, she spoke with scientific and moral authority. “The protection of human rights, our ability to empathize with and serve those most vulnerable, our push for universal access [to treatment] — these are all fundamental to combating the HIV/AIDS epidemic,” she added.
After her short talk, those in the audience were invited to share their thoughts. That’s when Burch and Ortiz spoke.
The Rev. Alex Garbera also shared a story about another activist whose death he didn’t hear about for six months.
“I guess his family wanted to keep it quiet,” Garbera said. He felt that didn’t do justice to the man or his work. “And I fear we’ve become complacent in some ways about death, and we don’t want to bum people out and we don’t want to scare people away from getting tested or getting into care. But getting into care is the answer,” he said, “because it does increase one’s survival advantages.” Garbera’s been living with HIV/AIDS for almost 30 years and is stepping down after many years as co-chair of the Mayor’s Task Force on AIDS.
After hearing so many of those living with HIV/AIDS speak, the city’s new health director, Mario Garcia (pictured), went to the podium. “I wasn’t scheduled to talk,” he began, “but I’ve become inspired by listening to everyone’s personal stories.” So he told a story about “the responsibility of science and the responsibility of patients for their own care.” The story was not about HIV/AIDS, but about a patient with leprosy he met 20 years ago while living deep in the jungles of the Amazon. He asked the patient why he never asked for help. The man said a doctor told him in the 1950s he had leprosy and he just had to wait to die. So he isolated himself and was dying slowly. “When I found him in the ‘80s, I told him, ‘Listen, medicine for leprosy has been around about 30 years, but by coming and living here, you exclude yourself from that opportunity.’ He told me, ‘That’s the message I received.’ This story came to mind today because I was so excited and touched by seeing people advocating for themselves, talking about. We need help and we need it now.’ It also made me think about the responsibility that science has, to develop therapies and help for people who need it.”
Asked after the event what groups she participates in, Burch said, “the Ryan White Planning Council, the Mayor’s Task Force, and the New Haven Care Continuum.” Asked why more consumers don’t get involved in AIDS advocacy, she replied, “Shame and guilt and denial and anger and pretensions — it’s so much. But you gotta let it go so you can grow.”