Introduction Estimating the magnitude of the stigma and unforgettable impact of the discrimination toward family members of AIDS victims in the early years is difficult. It may be hard to comprehend that although 30 years have gone by, many are still living with the secrets of their past. The fear of being shunned or ostracized if someone found out that one of their loved ones had AIDS was often so great, that the trade-off of isolation far outweighed the shame and embarrassment of being public. In today’s more accepting society, many are liberated and embraced for their openness, yet families from the early years are still living not just in the closet, but behind a locked door where the key seems irretrievable. There are still countless family members who insist on remaining unidentified and living in the shadow of what they perceive to be a very private and shameful experience. The following story was told by five individuals who were affected by the impact of AIDS in their lives and were courageous enough to share what they went through, hoping to change the stigma by finally coming out of a self-imposed closet and speaking up today to help so many others who share the same story. Joann Cantrell is an award-winning human interest/special features writer from Pittsburgh, Pa. She is currently working on a book with Arcadia Publishing. Her stories have been featured in the Pittsburgh Post-Gazette and numerous other magazines and publications.
More than two decades have passed since Kathy Dean became a widow in her early 30s, but she remembers that time of her life as if it were yesterday. She wonders now how the hell she ever did it, working full time in a demanding position for a corporation while attending night school. She had just finished her last final exam for an MBA program when she came home and her husband broke down to her. After months of being ill and seeing a number of doctors, he had just received word on a grim diagnosis. There was no cure. There was an unheard of zero percent survival rate. “It was literally like a bomb dropped out of the sky. It was the worst night of my entire life,” Dean recalls. What followed in the agonizing time period ahead were months of Kathy juggling her job while becoming a type of personal nurse and serving as her husband’s sole caretaker. For a long time,there was no one to lean on as she was afraid to turn to family or close friends for help. “I will never forget how absolutely alone I felt when my husband needed emergency medical attention and the doctor specifically told me not to bother calling 911 because they wouldn’t come.” During the same time that Dean’s husband was ill in Texas; Karen Gupton’s 31-year-old brother was dying more than 1,000 miles away in rural North Carolina. Upon his death, when the local undertaker was called, the staff refused to embalm him, callously tossed the body into a plastic bag and placed him in a closed coffin, careful not to have even the slightest contact. For Marla Tabaka, dealing with a terminally ill spouse with little or no support was a similar scenario in 1993 when her 37-year-old husband, Wally was hospitalized for pneumonia and brain meningitis. After taking a turn for the worse that resulted in him being put on a respirator, he unexpectedly and quickly died without his wife or family ever having the chance to speak to him again. Shortly after, while still at the hospital in a Chicago suburb, a social worker approached Tabaka when she was crying alone and asked if she would consider donating Wally’s organs. “I told her, no, I can’t,” Tabaka said. “But she then got really pushy and I finally just blurted out: My husband had AIDS.” The social worker asked who could be called. “Nobody,” Tabaka cried. “I have no one.”“Oh come on, you must have a friend,” she said to me, but at that time, it was too traumatic to talk about something so private.” Estimating the magnitude of the
stigma and unforgettable impact of discrimination toward family members of AIDS victims is difficult because even today, 30 years later, many are still living with the secrets of their past. The fear of being shunned or ostracized if someone found out that one of their loved ones had AIDS is so great, that the trade-off of isolation by declining to share their grief with friends, coworkers and even relatives has far outweighed the shame and embarrassment of being public. In today’s more accepting society where many are liberated to be open and embraced for their stance, families from the early years are still living not just in the closet, but behind a locked door where the key seems irretrievable. In Pittsburgh, Dr. Anthony Silvestre is a co-investigator for the Pitt Men’s Study. Since 1983, the research has been characterizing the natural history of Acquired Immunodeficiency Syndrome in gay and bisexual men. Silvestre is also a professor and director of the Pennsylvania Prevention Project, which is studying HIV-prevention knowledge, attitudes, and access to service of people at risk of HIV infection. The study, using focus groups and interviews, and funded by the CDC and state Department of Health, is being used to develop an HIV-prevention plan for Pennsylvania. “In the early days, people had to be very discrete in order to protect themselves,” Sylvestri recalled. “ It’s as if there was an invisible war in this country where tens of thousands of young men died and left an army of forgotten victims – the wives, parents, children and friends. And yet, no one is talking about it. It’s very bizarre because so many lived through that and lost friends or loved ones. It was a very, very difficult time in the not-sodistant past.” Sylvestri has lived with the faces of AIDS victims for more than 30 years and to this day, continues to find ways to keep centered while working for the cause. He knows that the devastation of the disease is not over. Describing one of his worst assignments, Sylvestri told of a time when he was charged to find cadavers of AIDS victims for research. After approaching a focus group of young men and discussing the need for scientific research, nine out of 11 men immediately wanted to sign up.
Still filled with raw emotional, Dr. Silvestri remembers the stunning response from the volunteers. “They told me that they did not want their deaths to be meaningless. They were not going to give up. They wanted to keep doing everything possible to stop the virus. You know, we talk a lot about the bad things of the disease, but there was a lot of nobility that no one ever knew about. People knew they were dying, but they wanted to help others dealing with the disease. Victims did not sit down for it – they kept going in the face of stigma, discrimination and all of that hatred. People kept marching forward and that was a beautiful, powerful thing.” The fear surrounding the AIDS epidemic in the 1980s is still fresh in many people’s minds. It was a period in time when very little was known about the risk of HIV transmission, which caused panic and prompted fear of those infected for fear of contagion. Misconceptions and prejudice forced family members of victims to distort their lives and lie. In most cases, sympathy was unavailable and self-worth was nonexistent. To protect dignity at an even greater extent, before Chris Baldwin lost his father to AIDS in the early years of the epidemic in 1984, arrangements were made for him to be buried miles out of the way from his hometown because of the fear that his gravesite would be destroyed with graffiti. Baldwin’s father was a well-known and respected high school teacher in Ohio yet at the time, his homosexuality and the circumstances of his illness were undisclosed. “I honestly wasn’t sure which was the greater secret – his lifestyle or how he died,” Baldwin explained. “I was 13 years old when he died and it wasn’t until I was in college before I could finally accept who he was and how he died. Now, I am amazed when I see people living long, healthier lives with HIV. I lost out on so much and the story of my father absolutely affected who I became and how I lived my life.” Baldwin was only a 3rd grader when his parents divorced and that alone was a traumatic event that fractured his family. But when a young friend later suggested that his father was gay, the comment hit Baldwin hard. His father had a close male friend, but it didn’t seem unusual. “My father was my best friend and so I never questioned anything.”
Even though his parents no longer lived together, Baldwin saw his dad regularly. He was an avid outdoorsman with a love of travel and hiking, and in the summer of 1984 he took his two sons and hiked across Colorado. “After the trip, toward August, I remember my dad wasn’t feeling well and he went to see a local doctor, followed by a specialist at the Cleveland Clinic. Naturally, I wondered what was going on, but I was told that he had a type of bacterial infection from drinking bad water and that actually seemed creditably possible as anyone who hikes and spends time outdoors could have done that,” Baldwin recalled. But his father never got well and died that November. Unaware of the real circumstances, Baldwin became frightened every time he had an upset stomach or felt sick because he thought about the hiking trip and worried that he had the same bacterial infection that he believed his father had. When his mother finally told him that his father had AIDS, a whole new panic set in. “I thought about my dad’s razor. When I was a teenager and spent time with him. I had used his many times – probably every teenage guy at some point uses their dad’s razor. Then my mind raced with worry thinking that I used the razor, I slept in my dad’s house, I kissed him good bye. I ended up having an AIDS test just because it scared the hell out of me. I didn’t know what was worse in my life, finding out that my father was gay or finding out that he died of AIDS. From that time on, what I went through absolutely changed who I was.” Karen Gupton has been changed the same way. Her family had gone to their church for guidance and counseling when her brother was dying of AIDS, but support was nowhere to be found. Word got around and the deacon called my brother and told him it was God’s punishment for being gay.
“A church that our family supported our entire lives turned their back on us,” Gupton remembers. “They simply were not there.” He had full blown AIDS and the secret was kept just within the immediate family. No one outside the family knew. No one asked why he was sick or at least if they suspected, they didn’t ask. People came to her brother’s funeral, but if they knew what he had died from, they were whispering. The family told everyone that he died of pneumonia. Gupton remembers how she would look at people who had family members die of other causes and feel bad because they had support. It was not until years later that she could finally tell her friends what happened – that her brother was gay and that he died of AIDS. “If my brother had to die, I wish it would have been during a time like the present when you can openly tell people how it happened. I was pregnant right before my brother died. My husband was concerned and afraid for me to see my brother and did not think it was a good idea. There was a lot of ignorance and people were fear stricken. I didn’t see my brother the final months of his life due to my pregnancy. My brother’s illness also took a toll on my mother because she was his primary caretaker while working a fulltime job. It was not only tough financially, but emotionally to live with the illness. I was the only one she had and I think she was very careful about how much she shared or leaned on me because she knew how hard it was on me.” The information about discrimination against family members of AIDS patients is substantial, covering areas from coast to coast and from big city to rural America. People described the disease as a punishment from God. Yet the family members knew that if someone was ignorant enough to believe that, they obviously never witnessed the horrible, merciless death that accompanied the victims of AIDS. The lasting impressions are so heart wrenching that to this day, the survivors still speak in whispers or send messages in code so that only very few are privy to the secrets they bear.
Kathy Dean remembers that there was a lot of black humor. People were making jokes about gays and AIDS victims and the Deans felt like the odd people out. They were a married, heterosexual couple. They heard of people being ostracized – losing their jobs or their health insurance and having dentists refuse to treat them. All this while dealing with the physical ailments of dying. “We belonged to a church bowling league at the time of my husband’s illness and one man in the league was sick with leukemia and eventually died. I was so resentful of all the support that he and his family received. People had no clue what I was going through in my life. We were still leading a double life because there was only a certain circle I could share our situation with. We made up stories and skirted it whenever we could.” Despite the hopeless prognosis, when the end came for Dean’s husband, it was unexpected. The night before, the couple had dinner and everything appeared to be fine. The next day, however, her husband was talking on the phone with a friend and within minutes, he was babbling and making no sense. He quickly became belligerent and it took several hours to solicit help from family and friends to dress him, get him into the car and take him to the hospital. Extremely articulate and composed, she tells her story in a matter-of-fact tone. “It was like we lived another life,” she said, with evident strength in her voice of how she handled the ordeal. “I certainly had a story to tell and in the beginning, I was so determined to let this world know that there are a lot of people dealing with this horrible disease besides gay people. “
“During the last year of my husband’s life, a so-called friend who I confided in told me that she couldn’t invite my husband and me to a party at her home because other people didn’t want to be in the room with someone who was HIV positive. My husband wasn’t a danger to anyone. At that point, I was determined that if I had to go through this, I wanted to teach the world something. So when he died, I boldly announced what he died from in his obituary. And let me tell you, I got some of the strangest letters and phone calls filled with hate. People need to know now that 20 years have passed – please don’t treat others this way. I am now 60 years old and I don’t ever want to see such cruel acts toward another human being again.” Marla Tabaka experienced the same heartbreak with her husband, Wally. He died seven years after being diagnosed when the couple had six-month-old twin daughters. “Wally had come back from Vietnam and used intravenous drugs, but when we were together, he had stopped for many years,” Marla explained. “He was not the stereotype of an AIDS victim. Wally was an intelligent man who got into the wrong crowd. I never thought in a million years that we’d fall victim to AIDS because he had been clean for several years and that part of his life was so removed from who he became. “ “We had bought our first house and felt we had a clean slate, but because of our twin babies, Wally decided to get tested and we didn’t give it a lot of thought. When he got the results, it was our wedding anniversary and he was late coming home. He finally called me and was on the other end of the phone line sobbing hysterically. He was about 37 at the time. He asked if he should come home or would I rather he not. I knew immediately what was going on. I said, “of course you need to come home, we need to go through this together.”
True to her marriage vows and loyal to her husband, Tabaka never considered leaving him and never told her family or children about the circumstances of Wally’s illness until years later when the general public was becoming a little more accepting. She kept the secret from her entire family, from coworkers and any other close relationships. Deep down, it always felt like she was living a lie. At age 52 now, she reflects that what she went through as a young wife and mother was quite the journey. She is happy that society is more open today, feeling that no one should have to live through what she did. Tabaka lived in fear of contracting the disease or that her young daughters were going to get it. She is thankful today that through Wally’s death, all of the horrible things that she feared were ahead of her never actually manifested. In a different type of circumstance, Florida native Ellen Segal-Bukstel and her family chose not to live in secret. Her husband, Doug Segal died in 1988, six months after his older brother. Both suffered through their entire life with hemorrhages caused by hemophilia and both contracted the AIDS virus as adults when they received HIV-contaminated blood products. “Initially, when we heard of a strange new virus going around, it wasn’t something we worried about. We didn’t associate it with our situation. Before anything was known about AIDS, our doctors said we should be concerned more about hepatitis from needles. Then, in 1983, we received a letter of recall about the blood my husband received being contaminated with the AIDS virus. By 1986, he was diagnosed with ARC – AIDS Related Complex.” Doug Segal subsequently came down with pneumocystis and was treated at Jackson Memorial Hospital, a teaching hospital in Miami, Florida. Little was known and AZT was just beginning to be used. After being tested herself, when Ellen told her husband that she was negative, he cried out of relief. “There was so much fear. We decided to be open and public about it – we were not going to wait or be in the closet. We went
to our Synagogue and told everyone at one of the Friday night services. We wanted to teach people. For the next two years, we spoke publicly to thousands of people from all different walks of life and to various community organizations and public schools, including the President’s Commission.” The Segals had put a new face on AIDS, drawing awareness to the virus being a human disease that caused suffering and death without discrimination. Though they found support among friends, being public did not stop others from shunning the Segal family. “One of the mothers from our daughter’s carpool decided that she was not going to provide a ride for her anymore. The local Jewish community center summer camp director said our children could not attend camp until they were tested for AIDS. It really angered me, yet that was one of the things that made Doug mad enough to get out of bed and fight. That incident is what made us realize that we had to speak out. We couldn’t live our lives in fear and secrecy. People said they didn’t know my husband was gay because they didn’t know anyone who was straight and infected.” Doug spent his last days at home and died from wasting syndrome – basically, a state of starving to death. He coughed and choked every single day and when he finally passed, he died with his eyes open. It was evident that he wasn’t going to make it but his wife remembers that he was a pretty amazing guy. He never complained. When his older brother died first, it was the beginning of the end and a very uncomfortable and sad existence for Doug. He died in bed lying next to Ellen. Though he fought a painful and tough battle, he left behind a beautiful legacy of love.
Shortly before his death, Doug Segal wrote a poignant and forthright letter to his children: Brett, Todd and Margo,
(The song Grow Up And Change The World is based on this letter to Doug and Ellen’s children) -Wooden Box http://www.reverbnation.com/ellenbukstel/songs Ellen Bukstel is a singer/songwriter and has written many songs based on her story: www.ellenbukstel.com
AIDS remains to be a life-threatening disease causing people react to it in strong ways. The disease is directly linked to behaviors that were already stigmatized in society in the early years: homosexuality, drug addiction or promiscuity. Most people were infected through sex which often carried moral baggage and was thought to be the result of personal irresponsibility. Some people believed that being infected with HIV is the result of a weakness of morals that deserves punishment. Harshly judged and ostracized, the family members of the victims often felt that the stigma was so great, socially and emotionally difficult that they felt they could not cope or handle the burden alone. It was better for victims and their families to lie and become invisible. A New York photographer, Linda Troeller, refused to let the victims become invisible. While the advent of AZT and various drug cocktails used to treat the symptoms of HIV became available, society started to think of AIDS as a manageable disease. But Troeller had a strong sense of awareness on the stigma for AIDS victims and their families long before others, mainly due to her keen observation as a photographer. Educating the public for more than two decades now, her award winning photo-essay, TB-AIDS Diary, premiered in 1988 and shed light on the ominous parallels between tuberculosis and AIDS as two great epidemics of the 20th century. Exhibited throughout the U.S. and Europe in the 1990s, Troeller’s photographs in the TB-AIDS Diary provide thought-provoking and visceral images. The exhibit displays the parallel stories of two patients, one being Troeller’s own mother, a TB patient who spent time in a sanatorium in the 1930s, and the other, an AIDS patient. The photographs focus on the stigma attached to the effects of the respective diseases, with an eye to using the lessons learned from the earlier epidemic to inform the public of misconceptions of the later disease.
“My mother was placed in a sanitarium for TB and I was fascinated with that part of her life. In the early years of the AIDS epidemic, when I heard that workers were afraid to take away food trays for people with AIDS in the hospital, I was truly alerted to the stigma and knew I wanted to create an art project to guide people to get beyond fears and emotions and be more informed.” After the exhibit traveled throughout the U.S., the TB-AIDS Diary was shown in Paris where victims were also being ostracized. That led to different magazines publishing the photos and it grew and went on to Germany, Italy, Greece and Spain. The exhibit grew from being art, to having doctors and healthcare professionals become supporters and advocates. The work continued to travel the world for about 10 years and was translated into 15 languages. “The most resounding problem was stigma and my story addressed that,” Troeller said. “I feel strongly that it is imperative for the disease to stay in the public eye to avoid complacency. Many people today view AIDS like tuberculosis – a disease well on its way to being eradicated, and that belief could not be further from the truth.” Realizing the powerful importance of the images, numerous people have begged Troeller to keep the exhibit public and not to ever let the TB-AIDS Diary die. Memories are bittersweet for Chris Baldwin who thinks about how different things are today. “I can’t begin to imagine the personal hells my father went through. Society is so accepting now of gays and lesbians. There’s got to be thousands of us who have been through this. Damn, if it had only been a few years later, maybe things would be different.”
“I think of my dad when there has been a monumental occasion in life like my wedding or the births of my children. Thoughts of him not being here or spending time with my boys hurts. People say I look like him and act like him and sound like him. I used to be ashamed, but I can say with pride now that my dad’s name was Roger. It’s been an interesting journey but I am proud and glad of who I am. My wife knows but my sons, not yet. As 8- and 10-year-olds, they are too young. I am not ready to go there just yet, but I will tell them in time.” There are still countless family members who insist on remaining unidentified and living in the shadow of what they perceive to be a very private and shameful story. One woman, still torn inside and struggling to keep her anonymity even decades later explains: “I used to pray that I would gain a different perspective. It may have taken more than 20 years for me to gain that, but now I see my friend’s death as a catalyst to draw awareness. Maybe the purpose of his suffering was to stir something with the public and change the way people and their families were treated. That is the only way to justify that some good came from his death.” For Kathy Dean, her life was consumed with fear as she watched her husband die and worried how his parents would take the news when learning he had AIDS. Following her husband’s death, her emotional capacity was drained and sucked dry. It took years, but she worked through it with the help of therapy. “I never felt so lost in my life. I was just depleted – there was nothing left. But I look back now and think maybe I gave this man the love that he never had. Maybe that was my role in life. I learned a lot from my husband and I tried to see something positive out of the massive negative.”
Finally coming out of a self-imposed closet and speaking up today is a way to help so many people who share the same story. Karen Gupton is angry when she thinks back to the time when we lived in a society where a group of people could be treated that way. When she talked to her 18-yearold son and told him about his uncle who was gay and died of AIDS, it was as if she said he had heart disease or anything else – the revelation didn’t even faze him. “The youth are much more educated and accepting today. The fact that it did happen is ludicrous and speaks volumes about the ignorance and the affect it had on people,” she said. “If I didn’t have a reason to become informed and aware, I would like to think I would have been tolerant of what people were going through. I wonder if my perspective would have been different had my brother not died of AIDS. I look at the news now and think, why could it not be like this 20 years ago? It makes me both angry and sad,” Gupton reflects. In the aftermath of the deaths of their loved ones, many of those interviewed tried to get involved by supporting the AIDS fundraisers or reaching out to the services. There was an immediate need to speak up, but that diminished over the years. All agree that despite the passing of 30 years, their stories still need to be told because there are still so many others who had to go through the secret shame and are still hiding and lying. Countless people died in a horrific way.
“Unfortunately, we didn’t know back then, we thought we were the only ones and we may as well have been,” Gupton remembers. “I looked for support groups for survivors and there was nothing. It just wasn’t there. It would have been so helpful to know that yes, there have been others who have been through this and they could help you cope. Hardly a day goes by that I don’t think about my brother and what we said or did growing up together, but just being a survivor is resilient. With all of the grief that I’ve been through, I have tried to remain resilient.” Photographer Linda Troeller thinks back and remembers a time when people would ask if she knew someone who died of AIDS. She would always firmly answer, “Yes, I do. And so do you.”