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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  • http://heimaey.us/ heimaey

    The Bible states nothing specific about classifying religions.

  • mvrs768

    Religions based on love and acceptance, well christianity and islam do not belong in that category.

  • mvrs768

    Actually, as per the bible they are.

    Which is why I don’t believe. Not believing this stuff is the way to go.

  • mvrs768

    I’d love to believe that, but the book known as bible is very clear. Its hate filled verses spell out quite clear what it thinks should happen to gays, even if many supposed christians today pretend the intolerant bits don’t exist.

    And that’s why I don’t believe in this whole bible/religion nonsense. Its bullshit and its bad for ya (c) George Carlin.

  • benb

    Fred is dead. I take no joy that a crazy man has died. I wonder if we won’t start to hear the announcements of books from insiders that claim they were physically or sexually molested and I wouldn’t be surprised if their accounts were true.

  • 2karmanot

    Like++++++

  • 4th Turning

    I suppose the acres/tons of these will end up in a Smithsonian warehouse somewhere someday.
    And after their loved ones are gone… What then? The same historical amnesia…

    I went ahead and signed up for the Planting Peace newsletter. Thanks for this posting.

    https://www.youtube.com/watch?v=DHvwHojloks

    http://www.plantingpeace.org/

    Also, speaking of ancient history, I was wondering aloud what any of us could do to help
    in some way our besieged friends in Russia. Only just now ran across this website.
    It’s Pride House video is amusing but not appropriate to include in this memorial.

    http://uprisingoflove.org/

  • http://buddybest.tripod.com/index.html BuddyNovinski

    Fred Phelps arrives at the Pearly Gates. Matthew Wayne Shepard comes out to meet him.
    “I must be in hell!” Phelps cries out in anguish. “I hate you, you ***”
    Matt stands there while Phelps tirades against his fate. Then Matt says, “This is not hell, but your hate has put you there.”
    Phelps immediately falls out of sight.
    “Some people never learn,” Matt says to Ryan White. “Their very hate condemns them.”

  • http://www.rebeccamorn.com/mind BeccaM

    Feel free. :-)

  • rabblerouzzer

    yawping poison-filled screamers? OMG, can I steal it? ;-)

    Here we are decades later, and I can fall back into the sense of overwhelming, compounded grief, not to mention the rage of watching far too many friends being abandoned by their blood kin. Arranging memorials and fundraising to pay for cremations so that friends didn’t end up discarded in a potter’s field. The night during a poker game in 1986, when somebody suggested we make a list of all the friends the five of us had lost to AIDS in the past 18 months, but when we hit 100, we were just too overcome to continue. For a solid year, I went to at least one funeral, though it was often two or three.

    During that time, I was also conducting LGBT Cultural Awareness training for the police academy of one of the most respected police departments in the world. Most cops held the attitude that if a victim or suspect even looked gay, they would not touch them (not even to handcuff them) and they would not render aid because they didn’t want to catch AIDS. It didn’t get much better after we knew it was a blood-borne pathogen, though we did get a protocol in place and everyone trained in its application. But for the knuckleheads, science didn’t matter, and while their ignorant voices were relegated to the underground, there were still instances (without discipline) when cops received assistance or service based on perceived sexual orientation. Those were dark days, indeed.

  • crazymonkeylady

    Painful memories. I remember working in a home for AIDS people whose families kicked them out. People were afraid and the patients were caught between death and rejection. It was very hard. But the place closed when people learned to not fear it and started accepting. So different from the dark days.

  • docsterx

    WBC classifies itself as a member of the “Primitive Baptist” group of churches. I disagree. I think that they’re just primitive. They have no relation to a religion as we know the meaning of that term.

  • docsterx

    Sorry to those who had bad memories stirred up by my post. I know how you feel. In addition to treating these AIDS patients, I lost some friends and colleagues, too. One lady was like a second mother to me. We worked together for years. Got really close on a personal and professional level. She was exposed to a massive quantity of HIV+ blood in a lab accident. She died when I was in another city doing medical school clinicals. I didn’t know that she was even back in the hospital again. I got a call on rounds one morning. A mutual friend called to let me know that she had died.

    Another colleague was diagnosed, but kept it secret. He went to work at another hospital and we were in touch only sporadically. One day I saw that he had committed suicide. His parents told me that he wanted to die while he was still capable of making that decision and not continue to deteriorate with the disease.

    I remembered them and the others in my post when I thought of Phelps and his hate. But then I started remembering some of the uplifting things that happened, too. Then can’t change what happened, but they do add another dimension to it, a much more positive one. The helpers were there, and still are.

  • Zorba

    Oh, my very dear Dr. Mark. I absolutely remember those dark days, with many tears.
    My beloved younger brother died of AIDS. He was one of the early ones. Thank goodness, my husband and I, and the rest of my family, supported him and his partner to the end. (Although it was especially hard on my parents.)
    Mr. Zorba is a virologist (actually, a retro-virologist), and one of the main reasons that he went into HIV research was because of my brother.
    We were living in San Francisco in those early, horrible days. And we lost many good friends, as well as my dear brother.
    You brought back many, painful memories. But we must never forget.
    And we continue to support the Milk Foundation (Harvey was our Supervisor when we lived in SF; we had met him, and we liked him, and were horrified when he was assassinated), as well as amfAR (The Foundation for AIDS Research).

  • http://www.rebeccamorn.com/mind BeccaM

    Sure they are. Just as there are religions based on love and acceptance, there are also religions based on hatred, bigotry and violence.

    The Westboro Baptists fall into the latter category.

  • http://www.rebeccamorn.com/mind BeccaM

    I also appreciated, in a weird way, the honesty of Phelps and his group of haters.

    Whenever I hear or read about someone using phrases like “lifestyle choice” or “traditional values” or “radical homosexual agenda” — who in the next breath insist they don’t actually hate gay people — I can’t help but conclude they actually do feel the same way as Westboro, but just don’t have the guts to admit it openly.

  • http://AMERICAblog.com/ John Aravosis

    That’s my position.

  • UFIA

    They are not Scotsmen.

  • http://www.rebeccamorn.com/mind BeccaM

    Fred Rogers was, himself, one of the biggest helpers ever. There are times when I look at my troubled childhood and dysfunctional family, and believe truly Mister Rogers (as we kids all called him) was one of the few reasons I survived it.

    The man was a living saint.

    I’m also certain, Mark, that he would’ve named you one of those ‘helpers’, too.

  • Indigo

    True enough.

  • http://heimaey.us/ heimaey

    They’re not religious.

  • docsterx

    At one of the hospitals where I worked, we had a 26 bed AIDS unit. It was almost always filled.
    I went home late one Friday night from the hospital. I had both Saturday and Sunday off. I was back Monday at 6 AM. We had a lot of new AIDS patients. Two of the previous patients had gone home, three had been transferred to ICU and 12 had died. The staff was crushed. I was speechless. It was unbelievable to have that many deaths in such a short time.

  • http://heimaey.us/ heimaey

    I disagree. Although it would have been hard. Let them protest wherever they want within reason, and just have everyone ignore them as much as possible. No yelling, no parodying, no bringing any more attention than was necessary. Guaranteed they would have stopped if that happened. They live for the attention.

  • docsterx

    Those were just a few recollections. But there are many more. Lots of wonderful people out there to make up for the Phelpses of the world. Fred Rogers’ mother summed it up.

  • pappyvet

    yawping poison-filled screamers ? I love you so much.;]

  • pappyvet

    Oh my Mark , just …………oh my.
    When I remember those wonderful friends who were basically tortured to death not just by a monster but by a cruel or deeply frightened public , I also recall those who answered the call.
    I will never forget the look on some of my dear friends faces. As a doctor I am sure you know which look I am referring to . The look that needs no words. That pleading look asking for a miracle. Just one more day , just one more hour, just one more chance. And the looks on the faces of the doctors and nurses who knew that all of their powers and all of their knowledge could not grant even the hope of that wish.
    I can never forget the nightmare of those days but I will also never forget that there were those who ran into the fire instead of away from it.

  • http://www.rebeccamorn.com/mind BeccaM

    It would have been nice if just ignoring Phelps and his hate-mob was always an option. Sometimes it was.

    Often it wasn’t. They liked targeting those who were emotionally vulnerable, such as the families who’d just lost a loved one. And those who want a happy event — such as the opportunity to marry — to go unmarred by protesters threatening eternal damnation.

    The Westboro haters knew to go after the innocents, those not in a position to easily defend themselves. And given the Westboro habit of obstructing and invading, it often was not possible to ignore them. Even when ignored and they didn’t get coverage, the bigots would still show up, trying their level best to inflict emotional pain on others.

    Put simply, Phelps and Westboro made ‘ignore them, they’ll just stop’ not an option.

  • http://www.rebeccamorn.com/mind BeccaM

    Thank you for this, Mark. I think it’s important to remember that hate and prejudice and bigotry are far from universal or even common.

    It’s just the yawping poison-filled screamers who get most of the attention.

  • Silver_Witch

    Thank you so much for sharing this post Doctor, it is beautiful and moving. I remember those times and the many friends I lost. I remember more how often their family and friends abandoned them, when they needed them most. How do you comfort a man who’s mother won’t hug him while he is dying? You can hold them…but it really their Mom that they want.

    Look how far we have come!!!

  • 2karmanot

    Just stunned by this article. It brings up such powerful memories, events as live now as then. Tears, will never compensate for the loss, or not stop for the living of it.

  • http://americablog.com magster

    Those are some touching stories in there. Thanks for sharing.

    Paradoxically,
    Phelps probably greatly advanced the cause of gay rights by being such
    an asshole that no one wanted to be lumped in with him or his church in a
    debate.

  • gratuitous

    I read Randy Shilts’ “And the Band Played On” many years ago, a very long book. Shilts (who also died of AIDS) was a terrific writer with a keen eye for the telling detail and a keen ear for the profound sentiment. One of his stories in the book was about a man, dying in the AIDS ward, who was not abandoned, whose friends continued to come and comfort him in his extremity. Or so they thought. Instead, as they grieved with him, he became their comforter, and as his body was robbed of its life force, it was as if he was giving it to them.

    Maybe it’s time to read it again.

  • BlazingDragon

    To get a flavor of what it was like for doctors and AIDS patients at the time, I highly recommend the TV movie “My Own Country” (http://www.imdb.com/title/tt0164110/?ref_=fn_al_tt_1). I saw this over 10 years ago and it still sticks with me. The treatment and experiences of the main character (recent immigrant from India in small town USA) was an interesting sub-text.

  • Mike_in_the_Tundra

    Making a contribution is a wonderful idea. We should make them in memory of Fred Phelps. I’m certain he would appreciate that.

    Your post left me misty eyed. Sometimes, I am reminded of that dark, sad time, but I don’t want to forget the people we lost.

  • http://heimaey.us/ heimaey

    This guy got way more attention than he ever deserved. IF everyone just ignored him, he would have stopped. We fed his narcissism.

  • Hatfield

    Here’s my take on the significance of Phelps: He and his group was a major face of anti-gay hatred. They are so morally ugly to most Americans that their gay hatred may tarnish others, like the GOP, which is in reality as much a hater, just less clumsy about it.

  • Indigo

    As a religious precept, deliberate cruelty to others can only be a sign of certain damnation.

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