BEYOND THE SHADOWS OF STIGMAa photo story into the lives of those infected or affected by HIV/AIDS by Melanie Hall

BEYOND THE SHADOWS OF STIGMAa photo story into the lives of those infected or affected by HIV/AIDS by Melanie Hall

YOU MAY THINK THE HIV/AIDS CRISIS IS OVER...

After all, it hasn’t been in the news for years and medicine has improved drastically since the eighties. Nowadays, people talk more about living with the disease than dying from it.

However, HIV/AIDS is far from gone. Although people may be living longer now, there is still no cure.

Stigma associated to HIV/AIDS has not been eradicated either. Those infected or affected by the virus still face the biases, stereotypes, and insensitivity of our society. Most of the time, this stigma is a result of ignorance or fear, and, much like a shadow, it can follow a person wherever they go.

Just as shadows cast a distortion of a person’s figure, stigma creates distorted images of a person too. Shadows show very little detail, stretching and skewing its image depending on how the light is shining. The same can be said of stigma. It distorts and stretches a person into an image lacking both value and depth.

Every person, infected or affected by HIV has depth, value, and purpose that transcends the stigma they may face. Every person has a story.

For two months, I had the opportunity to meet and get to know many amazing people in the Indianapolis area who either face the challenge of living with HIV or have some other connection to the virus. On the following pages, you’ll see only a small glimpse into their lives. My hope is that through the images, you’ll see beyond the shadows of stigma and see each person for who they are, not just the disease they have.

Terry >>>3 years ago, Terry was diagnosed with HIV. The biggest challenge for him was figuring out his medication and how he was going to pay for it. Shortly after being diagnosed, he started working at the Damien Center, an HIV care coordination center/testing site in Indianapolis because he believed that he should know as much as he could about HIV, not only to take better care of himself, but to help others who are in similar circumstances.

Terry has not faced much stigma personally; however, he sees himself as a relational educator. As people get to know him and his context of being HIV positive, Terry is able to be a learning experience for people who have a hatred or fear against those with HIV.

“Don’t discount yourself if you are HIV positive and don’t discount others if you’re not.” Terry has the attitude that HIV shouldn’t stop him from living a normal life. He explains he is living proof that despite having HIV, he can work 3 jobs, have his own business, and remain self-sufficient. He encourages others to no longer think of having HIV as the end of life, but a different life. He is very passionate about others maintaining their self-worth. “When you discount yourself,” he says, “you aren’t doing yourself any service.” He is an advocate of believing in yourself and others.

>>> (left) Terry with his two dogs, Maxwell and Romeo.

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“I didn’t want to tell my family. I was so afraid they wouldn’t want me around my nephew. My brother was an athlete and I figured my nephew would be too. I was so afriad they wouldn’t let me be involved in his life as he grew up because I was HIV positive.”Steve never thought he would be HIV positive. He decided to get tested anyway- just for peace of mind. So on a lunch break, 22 years ago, he got tested. The results he received changed his life forever.

Steve volunteers at the Damien Center every Monday in the food pantry (left). He is an example and encouragement to many of the clients at the Damien Center. A photo of him is even featured on a wall of the Damien Center (top).

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“I’ve had cancer 6 times, kidney disfunctions, a heart attack...I have a stint and a pacemaker now, I’m legally blind in my right eye...I’m on blood thinners and get bruises all the time...”

Despite all the health problems Steve has faced due to having AIDS, he has an amazing attitude. Since being diagnosed, he tries to live as healthy as he can. Doctors have called him a walking miracle. He should not be alive today, but he has beat the odds...more than once.

He’s been in three support groups over the years and said he’s seen a HUGE health difference in those who maintain a positive attitude and those who couldn’t. He says he’s so thankful he reacted the way he did and has been able to stay so positive over the years.

His family has been a huge support. He knows it has brought his family closer together. He’s seen changes in their attitudes, for the good, since he told them he was HIV positive. He’s been able to see all his nephew’s ball games throughout high school and college and now has 3 neices, 2 nephews, 2 great nephews, and one on the way.

Steve, on the steps of the Damien Center after his volunteer shift.

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Mark Lee, on a photoshoot for NUVO in Fountain Square. He was asked to photograph cultural places in the city and Fountain Square was his first stop of the day on December 13th, 2011. He made his first cover of NUVO this week (pictured in the newstand on the left).

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Mark Lee is an Indianapolis freelance photographer, who frequents in NUVO magazine and the Palladium.

Mark does not have HIV/AIDS virus, but he became affected by the HIV/AIDS crisis after hearing two men, Michael and Mark, speak at his church about why Christians should engage with this issue. He met them after the service and became good friends with them in the years to follow. He soon learned they were both HIV positive and was by each of their sides when they passed away in 1994.

His friends told him about the Damien Center, where he became a “Buddy” to AIDS patients in a support group. He did this for a number of years, walking through life with his new friends that were struggling with HIV/AIDS.

As medication improved, his role in the HIV/AIDS crisis began to change shape. He became involved in conducting over 200 interviews to put together a multimedia project about those infected by HIV/AIDS. His interviews were later complied into a play.

Mark (left) walks through his townhouse, which is filled with photographs that have been featured in galleries, each with a story of its own.

Mark shows me a picture of Jim (right), the first person he knew that died of AIDS.

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Teri first found out she was HIV positive when she was pregnant with her first child, 15 years ago.

Teri is not the picture you’d first think of when you hear about someone who is HIV positive. You would never know she is positive unless she told you.

She has been married to the same man for all 15 years, defying any stereotypes of being someone who just “sleeps around.” Her husband is HIV positive as well and has not told many people because of stigma.

Teri is an advocate for education within Indianapolis, specifically a campaign called “One Test, Two Lives” which urges pregnant women to be tested for HIV so their child can grow up HIV negative.

Her daughter, Jaclyn, now 15, was born HIV positive, but because of medication, she’s been HIV negative since the age of two. Teri and her husband also have a 5 year old girl named Madeline, who was born HIV negative.

“I hope that I’ve made a difference in the past 15 years because a lot of people label and stereotype the disease as people who are gay or use drugs. I try to open their eyes to see that it can happen to anyone, whether you’re white, black, purple, or green. It does not matter, anyone can get this disease. Telling my story opens eyes…”Teri loves to share her story and a message of hope with the desire of raising awareness and prevention among youth. Her daughter Jaclyn is also a big advocate in her high school now too.

Teri is a HUGE Pacer’s fan. Her family has been to many games, especially beore Reggie left.

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“I didn’t have time to deal with stigma, I was dealing with the loss of my partner Joe, finding the right medication, and getting insurance.”

Kim Johnson was diagnosed with AIDS on September 18th, 2002 and was immediately put in the hospital. He couldn’t eat, drink, or taste and had lost a great deal of weight. While in the hospital, his partner Joe committed suicide.

Kim has overcome a great deal of challenges in his life, but he has never lost hope. He’s worked in legislative affairs in Washington D.C., as a personnel director for Indianapolis based corporations, and even started his own business.

He wants to help others in his situation too and serves on a handful of Indianapolis committees, including HOPWA (Housing Opportunities for Persons with AIDS) and served as the Executive Director of the Ryan White Foundation.

Kim sits in the shadows of his Indianapolis home, which used to be a studio for a well known Indianapolis artist.

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“I know more about HIV/AIDS than I ever thought I would,” says Kim Johnson.

Kim looks out the window of his Indianapolis home that his partner Joe designed before his death (left).

Kim’s cat, Nikki (top right), has been a loyal companion throughout the past 12 years.

Kim looks through an address book (bottom right), sharing that the majority of people in it are now gone because of AIDS.

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Alice is one of the most hospitable people I’ve ever met. Every kind of person is welcome in her home. She won’t turn down anyone. Alice (top) looks through 5 photo albulms of pictures from her dinner par-ties. No one is still living from the first two albums.

Ken (middle) was the young man she took to White Castle. He was the beginning of a legacy and one of Alice’s dear friends. She teared up as she talked about his life.

Alice prepares for a Thanksgiving themed dinner on November 11th, 2011. She still hosts dinners every first and third Friday of each month. The crowd has changed drastically since she began nearly 20 years ago, but the company is still as wonderful, she says.

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Alice Langford has made a huge impact on hundreds of lives in the past 20 years.

She first became affected by the HIV/AIDS crisis 20 years ago after hearing a sermon at church. She began volunteering at Parkside Nursing Home.

“I was a nervous wreck,” she says. After undergoing a background check at Parkview, Langford walked into a large area where patients were sitting around. Figuring she should start somewhere, Langford walked up to a young man and asked him if he would like to go to lunch and, if so, where.

“The first thing he said was ‘White Castle.’ I told him, ‘Oh, you’re a man after my own heart. I usually can’t get anyone to go to White Castle with me,’” Langford recalls with a laugh.

When the other residents realized where the pair had gone for lunch, they decided to join them on their regular trips to the restaurant. Soon, the “White Castle Club” had been formed.

“However, those trips for fast food seemed inadequate to Langford some time later when she struck up a conversation with another resident at Parkview Manor, where she’d become a familiar face to those who lived there.

“One boy commented that people come and visit us and take us out, but they never take us home,” Langford recalls.

Langford wasn’t surprised. At the time, newspapers and television stations regularly reported incidents of society shunning those with the disease. Some residents at Parkview never saw any of their family members. “In the beginning, we treated them like lepers,” Langford recalls. “A lot of that was based on ignorance.”

Since that week, she began hosting dinners at her house for the patients.

(some excerpts taken from the Indianapolis Business Journal, March 13th, 2006)

At Alice’s dinner’s, the company would always dance (top left). When it was nice outside, they’d form what they called the “Soul Train.” Every person had a turn to dance in the middle of the two lines, even those in wheelchairs.

Alice has received dozens of awards for her com-passionate and servant heart. Here (middle) she receives the HealthCare Heroes award.

Robert was one of Alice’s friends who was in a wheelchair. He realized he’s never had a picture standing up, so Alice (bottom left) helps him stand so he could.

Alice had two patients end up living with her. Here, Donna and Alice celebrate Donna being able to walk up the stairs, Alice’s only condition for Donna to be able to live with her.

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Each one of these stories represents hundreds of others who understand the challenges of living with HIV/AIDS.

It is not a far-off problem, but an issue that should affect all of us.

I hope when you hear HIV/AIDS that it will no longer be a statistic in your mind, but a story. A story of struggle, a story of hope, a story of our common humanity.

May you move beyond the shadows of stigma and join the story.