Hope in the fight against AIDS
By Mike Segar
The photos in this project, conceived ahead of this week’s International AIDS Conference, are not the dramatic, heartbreaking, moving sort that we have been used to seeing of AIDS patients from the ‘80s and ‘90s. What I came to quickly realize is that this story, or I should say this portion of it, is about hope – hope and recovery. Living and learning to live as best one can with a disease the world has come to know all too well as an indiscriminate killer.
Take for example the hope that I saw in the eyes of 40-year-old AIDS patient Bobby Billingsly, a man who was close to death when he arrived at Broadway House in Newark, New Jersey, with a CD4 count near zero in 2009, an indication of what is known as Full blown AIDS.
With the care of nursing, physical therapy and support staff, the latest in AIDS fighting medication, exercise, healthy diet and therapy, Billingsly is becoming the picture of hope – at least to me. He has slowly been able to raise his CD4 count to nearly 200, improving his overall health and hoping to live as long as possible with AIDS. Twenty years ago he would surely have faced a speedy death. Perhaps most hopeful is the attitude he shows of resolve and determination to move forward — something he said he had little of when he arrived. When I asked him how he looks at having AIDS now as opposed to then he says, ”With the medication, workouts, and all we do here, there is reason to believe that you can beat this thing, maybe not beat it, but not let it beat you.” That stuck with me.
Ahead of the AIDS conference, being held in the U.S. for the first time since 1990, I was asked to take a look at something related to HIV/AIDS in America. Not much direction or specifics were given, but rather more of an open palette. My first reaction was: kind of a big subject. But I decided that I would be willing to take a swing at finding out something about people living with the HIV virus in America, who some of them actually are, and try to at least put a human face on this devastating disease to see what I could learn.
After months of mostly meeting with rejection in my efforts to gain access to any AIDS care facility, or clinic, or hospital, I was becoming somewhat frustrated. When a photographer for an international wire service writes and calls trying to get the chance to photograph people infected with HIV and those suffering from AIDS in an attempt to get a glimpse of their life for our readers, it is not surprising that people would be cautious and want to protect their privacy.
After several months I got a reply from Broadway House for Continuing Care in Newark. The staff had identified willing patients who wanted to talk to me about living with HIV/AIDS. The facility stands in the North Ward of Newark, New Jersey, just across the Hudson River and New York Harbor from New York City, in a building featuring soaring two-story marble lobbies that once were home to a public high school in a grander, more prosperous day that this low-income, urban area left behind many years ago. It is New Jersey’s only specialized long-term and residential acute care facility for people living with HIV/AIDS. Opened in 1995 when a consortium of five hospitals in the City of Newark implemented a new concept in community-based AIDS care, Broadway House offers comprehensive in-house medical services to those suffering from HIV/AIDS, in a community where HIV infection is still endemic, in a state that ranks fifth overall in the United States for total AIDS cases.
James R Gonzalez, Broadway House President and CEO, says the change in perception and reality for patients at Broadway House since 1995 has been remarkable. “To see a patient like former NBA player Nate Granger for example, who came here after suffering a stroke, unable to walk or talk, emaciated and dying of AIDS, to see him improve enough to move out of acute care and into Genesis (a nearby affordable housing development)… and to see him move into an experience of an independent, healthy lifestyle living with HIV is such a giant leap from 20 or 25 years ago or even when we opened our doors in 1995.”
“The stories of AIDS patients here have not all been happy, but we see so much hope today where there was far less when we started. That’s a good sign,” Gonzalez said.
LEARNING TO LIVE A BETTER LIFE
Once upon a time not long ago in America, a diagnosis of infection with HIV, the Human Immunodeficiency Virus, was a complicated death sentence. Today, as has been well documented, HIV/AIDS in America is largely becoming a chronic disease rather than a sure death sentence. The ultimate goal for residents at Broadway House, whose average age is 42, is preparation for life back in the community with hopes of living a longer life with the HIV virus.
Sixty-nine-year-old Woodrow “Woody” Barron, a resident of Broadway House for five years who contracted the HIV virus as an intravenous drug user sometime in the mid 1980’s, has seen the full gamut of the disease and the horror it has wreaked, especially on his African American community. I asked him what he thought of the fact that of the more than 1 million people living with HIV in the United States today almost half are African American, yet African Americans make up just 14 percent of the U.S. population (according to the CDC-2012). Barron, who is confined to a wheelchair, said he had a message for young African American men and women at risk of contracting the virus: “Learn a way to live a better life,” he said. “Young people should get tested, regardless of what other people think, stop having unprotected sex, think and open your eyes. It’s your life, not someone else’s.”
What I took away from these men and women at Broadway house was not just hope for HIV/AIDS patients today and their chances of survival, but more a personal sense of the reality that there are still so many at risk and work to be done with that sense of hope in mind. Having seen my own mother die in a nursing home from an incurable disease (Alzheimer’s) where there was no sense of hope, I felt these men and women had hope, with good reason despite the horror of this disease and the fact that it has wreaked such devastation among the African American population in particular.
A NEED FOR BEHAVIORAL CHANGE
Yet, just blocks away in the heart of downtown Newark, on the second floor of a two story walk-up across from Newark City Hall, I found Gary Paul Wright, the executive director of the African American Office of Gay Concern, who painted a somewhat darker picture. His is a community-based organization that deals primarily with outreach to African American gay men and transgender people in Newark in a broad-based initiative to stem HIV infection and educate youth at risk.
“Let’s remember AIDS is a medical issue, first, and it’s deep into our community. The stigma surrounding HIV/AIDS and how people become infected has been deeply detrimental to our community, deeply!” he said. “Because we are not in the schools talking about it, and teaching about it to these kids, even those with HIV in their lives don’t know the real deal… If we could catch people earlier on, at younger ages, and convince them of the message that this is a lifelong disease, you only need to get infected once and it’s with you forever and could kill you, I think we could do a better job. But I just think we all have failed them… and enough is not being done to change that.”
Much like Broadway House patient Woodrow Barron, Wright spoke about change: “The educational deficit about AIDS is one thing, but what we are not talking about largely is behavioral change, that’s really what’s putting people at risk. Kids, African American and Latino kids, here in Newark and elsewhere, need to change their behavior. If Michelle Obama made a condom commercial saying, “You all need to use this,” maybe we would see behavior change, but too much is being left to small CBO’s (Community Based Organizations) like mine to do in this fight. We are fighting for continually reduced dollars to fight this epidemic… I wish that some of these politicians would get out of their air-conditioned chairs and come see what we are dealing with here and in places like this, the inner city where the epidemic really is. We are not talking about getting limo service to a doctor’s office. We’re talking basic health care, basic needs; that’s what’s driving the epidemic in this city.”
SUPPORTING ONE ANOTHER
The CDC statistics about African Americans and HIV are staggering. As an ethnic/racial group, African Americans are the most affected by HIV/AIDS in America, accounting for nearly 70 percent of all new HIV infections in 2009. New HIV infections among young black MSMs (men having sex with men) increased by 48 percent from 2006–2009. At some point in their lifetimes, an estimated 1 in 16 black men and 1 in 32 black women will be diagnosed with HIV infection (CDC/2009).
Knowing this, I turned to the AIDS Service Center of New York City (ASC/NYC) which helps HIV-positive New Yorkers, and those at risk, get a second chance to reclaim their lives by offering a diverse range of individualized, professional services including access to healthcare, social services, peer education and safe-practice counseling.
Having lived in NYC in the last part of the 1980s and through the 1990s, I knew well that the AIDS crisis had hit the gay community here like nowhere else in America at that time. But what is today’s perspective in that community? Who were at risk and was the stigma of HIV infection there different than in a place like Newark?
Through Guy Williams, assistant director of prevention services at ASC/NYC, I was introduced to a group called SWAG (Sexy with a Goal). SWAG is ASC/NYC’s community empowerment initiative to try to end stigma and boost community awareness about HIV/AIDS. This group of young, mostly African American HIV positive males from ages 19-29 actively engage their community, hand out condoms, meet with and identify young gay men at risk and attempt to educate and empower them and try to make a difference — all in an effort to stem HIV infection among their peers. They also socialize together to support each other in their own personal lives.
Again I was drawn to what I had learned in research about how HIV/AIDS so alarmingly and disproportionately affects African Americans today in the U.S. Here was a group of men almost exclusively African American who classify themselves not necessarily as gay but rather MSM’s (men having sex with men). They allowed me to get to know them, hear their stories and photograph their group.
What came through as I witnessed the camaraderie these men displayed with each other – men within their peer group in the face of a terrible illness – was once again a powerful sense of resolve and determination that HIV infection and the stigma that surrounds it was something they were actively addressing head-on. They were sending out a message and a loving or understanding hand to those at risk, while trying to make a difference in their own community, not allowing the disease to control their lives negatively at any cost and by any means. It was impressive, in a way I had not expected to experience.
As Williams tells it, a major problem facing black America and those infected or at risk of HIV is still stigma: “It’s up to the African American community to take the action that the white gay community has already taken in the fight against AIDS. In the 80s and 90s they embraced their status, had no problem saying they were HIV positive, had AIDS and wanted help, and have received the resources and attention needed to start to save them. Until the African American community can erase all the stigma that goes along with being HIV positive, there is still going to be a huge problem making progress against these infection rates.”
As photographers we find reward mostly in making lasting and hopefully meaningful and compelling images of our world now. Yet, what I found most rewarding about this small project in the end was not the pictures I made. For this story, it was the people I met. Glimpsing upon the world they live in, identifying the immense problems and obstacles faced by people infected with HIV that I met, learning their personal stories, happy and sad, put a human face, a name, a voice and a place for me on part of such a huge global pandemic. They are just people coping with this virus, right where I live.
A note of thanks several people who were instrumental in helping me produce this piece:
Corinn Somers, MaryAnn Tracey and James R Gonzalez at Broadway House for Continuing Care in Newark for their help and support; Rebecca Oneill, Guy Williams, Brooke Bailey, and Franklin Burns at the AIDS Service Center of NYC (ASC/NYC); Gary Paul Wright, Executive Director of the African American Office of Gay Concerns in Newark, New Jersey