Fred Phelps’ death and the unsung heroes of the AIDS crisis

With the news that religious right bigot Fred Phelps died yesterday, it got me remembering back on the terrible days when AIDS was raging. Those were dark, sad and frightening times. They bring back unpleasant memories.

But it also reminded me of so many heroes you’ve probably never heard about. Let me tell you about a few.

We didn’t know if you could catch HIV/AIDS from casual contact

There were many who acted out of hate and fear, anger and mistrust. There were those who deserted their family members dying from AIDS. Those who refused to be anywhere near AIDS patients. Those who were terrified of catching the disease itself or of being associated with the stigma of being with someone who had contracted it. The Gay Plague. The Gay cancer. You certainly didn’t want to be branded as someone who associated with GAYS, especially sick gays dying from an infectious disease. A disease that you might catch (or so you wrongly thought) just from casual contact or being in the same room. It was a nightmarish time.

But we may also think of the others who overcame their own fears and prejudices to try to help and nurture patients. At that time, the mode of transmission of HIV wasn’t completely clear. The researchers who began the initial work to find the cause of AIDS and treatments for it could have been risking their lives by collecting specimens and processing them, growing the virus, injecting it into animals. Or from directly interviewing and examining patients afflicted with AIDS. At the time, no one knew what was safe and what was not.

Equality House via CNN. More on them below.

Equality House via CNN. More on them below.

Or maybe we remember the AIDS activists who started pushing a government frozen by denial and ignorance. Or those who went to patients’ homes, taking food, spending time with them. Helping them with personal care issues. Who transported them to doctors’ appointments, and simply were there for them when they had no one else.

We could remember family members and friends who stood by patients rather than deserting them. Those who offered support and more. Mastering their own fears of contracting the disease in an effort to help someone else.

Most of us who are old enough to remember the horrors of the eighties and nineties, can easily call up names of these people. Those who initially discovered the disease, isolated the virus, fought for funding, pushed for government assistance for research and education.

But what about those who didn’t get mentioned nationally? Those people who did their jobs daily and helped AIDS patients? Those family members who stuck with AIDS patients? They were quietly doing their best to help, because they could, because they wanted to or needed to offer something of themselves.

Hospitals used to not require employees to work the AIDS floor

One hospital where I worked had an AIDS unit. It was staffed by nurses, nursing assistants, secretaries and others who volunteered to work there. The hospital would not require anyone to work on that floor. There were a lot of employees who wouldn’t even go to that floor. They were terrified that they might catch AIDS. Or they felt that the disease was a punishment from God and those who had it deserved to die. Some were uncomfortable around people who were gay, whether they were ill or not.

Yet, despite this, the floor got staffed. Sometimes there weren’t the optimal number of nurses or aides. Sometimes the staff worked overtime. But they came through. It wasn’t easy working there. There were lots of crises, lots of deaths. There were issues of working with patients, newly diagnosed, dying and totally abandoned by almost everyone they knew. It was a hard job.

The dietary workers delivered meals to the patients, dropped off menus, brought up snacks and nourishments to the floor. Many of the dietary workers simply refused to bring food to the AIDS unit. But a few stepped up and volunteered to serve the patients on a regular basis. It was difficult to get professionals to work on this floor. Professionals who had degrees and who had a good idea of how the disease was transmitted. Yet these dietary workers often hadn’t even finished high school. These ladies knew that AIDS was infectious. But they volunteered anyway.

One day I asked one of the dietary workers, whom I had gotten to know a little, why she was taking trays to AIDS patients when others refused. She looked at me like I was some kind of idiot and said, “Now just how are they supposed to get better if they don’t have food to eat?” Then walked away to continue passing out trays. She knew as well as I did, that most of those patients weren’t going to get better.

One patient was a 22-year-old man. His family ended up abandoning him.

One patient was a 22-year-old man. His family had no idea he was gay till he was diagnosed with HIV. He was admitted and quickly went downhill.

His father blew up and said that no one in the family was allowed to visit the “f*ggot.” He was disowning his son. Though the father would call at least once a day to scream and remonstrate with his son. His voice was so loud on the phone, he could clearly be heard in the hall outside the patient’s room. The patient’s mother and grandmother would call him during the day when his father was at work. They were not happy with him either, but they did offer a small measure of support. Grandma said that she might even try to sneak in to visit him.

Then the family learned that HIV was infectious.

His mother called and said goodbye to him.

Grandma called and said she wouldn’t visit because she didn’t want to get the disease and die the way he was (he had gone blind, was having respiratory problems and had Kaposi’s sarcoma in some of his abdominal organs.)

He was devastated and crying. One of the few religious people who would come to the floor was a tiny, elderly Ethiopian Catholic priest. I found him sitting on the patient’s bed, holding him while the young man cried on his shoulder. The priest later explained to me, in broken English, what had happened between the patient and his family. His English may not have been good, but his actions were truly eloquent.

There were dozens of others, just in this hospital alone. Doctors who took care of AIDS patients. Surgeons who did procedures on patients knowing that should there be a slip of scalpel or needle, they might become patients on the AIDS unit themselves. Respiratory therapists who did breathing treatments on patients, and phlebotomists dealing with secretions and specimens from these patients, often doing venous or arterial punctures on them for needed blood specimens.

There were some volunteers from the community, most were gay, but some straight, who came in and would do whatever they could to help: run errands, sit and talk, offer support and do other needed things that those patients required. And there were the families and friends who didn’t abandon their loved ones. There were thousands more in other hospitals, clinics, hospices and in other places all over the country who tried to help. Who never asked for anything in return. Doing simple things that were magnificent.

Fred Phelps

Fred Phelps Klan at Supreme Court oral arguments on Prop 8, challenged by a pro-gay advocate.  © John Aravosis 2013

Fred Phelps clan at Supreme Court oral arguments on Prop 8, challenged by a pro-gay advocate. © John Aravosis 2013

I wrote this because I was thinking of Fred Phelps, of “God Hates F*gs” fame, and his clan. How vicious and hate-filled that they are. I thought of Fred, now dead, and the hostile, anti-gay legacy that he leaves behind. Phelps’ behavior, and that of many members of his family, is simply repugnant.

But while thinking of them and their actions, I started remembering some of the instances of good people who helped stricken gays. How some kind people responded, sometimes to people they had never met before. How they comforted, shared with and respected those patients who needed them.

Maybe we can do something like they did. Something that is positive to help negate the work of Fred, his family and the Westboro Baptist Church. One thought is to donate to Equality House. Equality House stands near the Phelps’ compound and proudly displays the rainbow flag… everywhere.  They painted the entire house as one big rainbow. Equality House works against bullying and in support of human rights. It would be fitting to make a contribution to that organization. Not only does it have worthwhile goals, it just happens to be a constant reminder to the Phelps family that we’re here and still active against them and their hate.

Or we could donate to any one of a number of LGBT charities like the Milk Foundation, Lambda Legal, SAGE (an organization for seniors) or any one of a number of others. To help erase Fred’s legacy of intolerance and hate.


Mark Thoma, MD, is a physician who did his residency in internal medicine. Mark has a long history of social activism, and was an early technogeek, and science junkie, after evolving through his nerd phase. Favorite quote: “The most exciting phrase to hear in science... is not 'Eureka!' (I found it!) but 'That's funny.'” - Isaac Asimov

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