caring for AIDS patients "when no one else would"
January 8, 2015 4:36 PM   Subscribe

In the darkest hour of the AIDS epidemic, Ruth Coker Burks cared for hundreds of people whose families had abandoned them.
Courage, love and the 30-year secret of one little graveyard in Hot Springs, Arkansas.

NPR: Caring For AIDS Patients, 'When No One Else Would'
(summary & audio story, approx. ~3 min.; transcript of audio)

The NPR piece above includes excerpts from two StoryCorps interviews, below (audio + full transcripts available at each link)
Now a grandmother living a quiet life in Rogers, in the mid-1980s Burks took it as a calling to care for people with AIDS at the dawn of the epidemic, when survival from diagnosis to death was sometimes measured in weeks. For about a decade, between 1984 and the mid-1990s and before better HIV drugs and more enlightened medical care for AIDS patients effectively rendered her obsolete, Burks cared for hundreds of dying people, many of them gay men who had been abandoned by their families. She had no medical training, but she took them to their appointments, picked up their medications, helped them fill out forms for assistance, and talked them through their despair. Sometimes she paid for their cremations. She buried over three dozen of them with her own two hands, after their families refused to claim their bodies. For many of those people, she is now the only person who knows the location of their graves.
posted by flex (64 comments total) 103 users marked this as a favorite
 
Sheesh, I knew my apartment was overdue for vacuuming but I didn't realize it was that dusty in here.
posted by ActionPopulated at 4:46 PM on January 8, 2015 [2 favorites]


That's a amazing story, thank you for posting it. What a remarkable woman.

Also, this quote:

"I watched these men take care of their companions, and watch them die," she said. "I've seen them go in and hold them up in the shower. They would hold them while I washed them. They would carry them back to the bed. We would dry them off and put lotion on them. They did that until the very end, knowing that they were going to be that person before long. Now, you tell me that's not love and devotion? I don't know a lot of straight people that would do that."

is so very true. I was a teenager during the height of the epidemic, and I could never understand how people could think gay relationships were somehow less, or not real, because of that.
posted by tavella at 4:47 PM on January 8, 2015 [17 favorites]


What a wonderful woman.

Her son was a sinner, the woman told Burks. She didn't know what was wrong with him and didn't care. She wouldn't come, as he was already dead to her as far as she was concerned. She said she wouldn't even claim his body when he died.

I am trying to live my life with more compassion, but those people make me hope my atheism is wrong and there is a hell. I hope she lived/lives it every day.
posted by Lyn Never at 4:52 PM on January 8, 2015 [8 favorites]


I was in tears just reading that first link - if I clicked on the StoryCorps link, I would just be a puddle on the floor.

I'm so glad she was there for those people, and I can't imagine abandoning your child. At first I wanted to say that Billy's mother should rot in hell, but she already is in a hell of her own making.
posted by mogget at 4:54 PM on January 8, 2015 [2 favorites]


I hope my atheism is wrong so that there is a heaven, and thus Ruth Coker Burks gets a glorious seat right at the heart of the most joyful, beautiful spot.
posted by BigHeartedGuy at 4:56 PM on January 8, 2015 [22 favorites]


She went to a friend at Dryden Pottery in Hot Springs, who gave her a chipped cookie jar for an urn. Then she went to Files Cemetery and used a pair of posthole diggers to excavate a hole in the middle of her father's grave.

"I knew that Daddy would love that about me," she said, "and I knew that I would be able to find him if I ever needed to find him." She put the urn in the hole and covered it over. She prayed over the grave, and it was done.


I hope there's a heaven, so her father can be proud of her.
posted by Iridic at 4:57 PM on January 8, 2015 [6 favorites]


It's always good to be reminded of the wonderful people in the world who, by their own acts of love and generosity, help to defeat the thoughtless, selfish and evil even when severely outnumbered. What an incredible person.
posted by nfalkner at 5:03 PM on January 8, 2015 [21 favorites]


Quite a story. Thanks.
posted by jonmc at 5:08 PM on January 8, 2015


Ditto
posted by clavdivs at 5:10 PM on January 8, 2015


I'm friends with David Koon, the writer of the Arkansas Times piece. I just wanted to add that he got a note from the principal of the local Catholic boys' high school who offered his and his students' help to clean up the cemetery, and that offers of donations for a memorial have been pouring in. As David said on his Facebook page, "The worm turns slow, sons and daughters, but it does turn".
posted by Taystee at 5:13 PM on January 8, 2015 [38 favorites]


OK, I'm crying so hard after reading the first link that I can't even click on the next one. What a beautiful, painfully human story. The generosity of spirit, humility, and kindness shown by Ms. Burks and the friends and partners of the men who died, the people who stayed, the people who bore witness... it's just staggering.

Thank you Ruth Coker Burks for being a beam of light in a dark world, thank you David Koon for writing such an amazing piece, thank you flex for sharing these stories here, and

. . . . . . . . . . . . . . . . . . . .
. . . . . . . . . . . . . . . . . . . .
...

for Roger, Billy, Raymond, and everyone else who was laid to rest at Files Cemetery.
posted by divined by radio at 5:32 PM on January 8, 2015 [9 favorites]


"I called her back," Burks said. "I said, 'If you hang up on me again, I will put your son's obituary in your hometown newspaper and I will list his cause of death.' Then I had her attention."

Wow. Damn. I would like to be half the person this lady is.
posted by roomthreeseventeen at 5:40 PM on January 8, 2015 [31 favorites]


Dammit, I was going to post this. Well, probably not because I'm friends with the author and that's probably too close to self-link territory. But I wanted to post this.

Curse you.
posted by middleclasstool at 5:41 PM on January 8, 2015 [1 favorite]


What a kind and amazing lady.
posted by fluffy battle kitten at 5:42 PM on January 8, 2015 [2 favorites]


People have been really enjoying Cutting For Stone, Abraham Verghese's first novel, but his nonfiction account of starting an AIDS hospice in a small town in Tennessee has always been, to me, his crowning achievement. My Own Country talks about being an outsider, treating outsiders. His lovingkindness is wonderful. If you would like a book length journey to awaken compassion, I recommend it.
posted by janey47 at 6:00 PM on January 8, 2015 [10 favorites]


Bawling after listening.

Here in Seattle, for a a few years in the early 90s, I was the only person (besides any surviving friends) who would take care of family-less Jewish men who died of HIV. The local Chevrah Chadashah (burial societies, usually part of a particular congregation) would not go near their bodies due to homophobia, ignorance and fear of AIDS.

The men would be delivered, usually by ambulance, because most undertakers who worked with the Jewish community wouldn't accept HIV deaths. At least two guys I can recall came in the back of a station wagon or pickup truck; perhaps they died at home instead of a hospital or Bailey-Boushay AIDS Hospice. They were driven to the old yellow brick Bayit Mot (a Jewish chapel, now demolished, for receiving, washing, and guarding bodies just after death) on 12th Ave, a few blocks from the gay bar district around Pike Street. It wasn't unusual for me to be called from my 2nd job as a bartender, and ride my motorcycle over. Although I and anyone with me (rarely Jewish, often a friend or widower of the person we were tending) had to wear gloves, rubber boots and disposable tyvek biohazard gowns, other than that we took care of them in the usual Jewish way. Aside from their abandonment (which was utterly contrary to Jewish law), the other problem was the sex of the washers should be the same as the sex of the deceased. But I was the one who both knew what to do, and wasn't afraid to touch them.

I had learned about Taharat (ritual washing and care of the Jewish dead) back east, where I had been close to a lot of HIV+ Jewish gay men from religiously observant backgrounds. I hadn't lived in Seattle long enough to know who most of the men I took care of in the PNW were. Fortunately.

After they were washed both practically and ceremonially, then dressed in their shrouds, I would wait by their side, often alone, reading or chanting Psalms. This was typically most of a day or overnight. Then they went to be buried if a place could be found; the Reform synagogue in the gayborhood donated several plots over the years. Or they were taken to the morgue or even cremated, in spite of that being prohibited both by Jewish law and post-Holocaust revulsion.

I cannot imagine the compassion and strength this woman and her family had to both care for the dying, bury them after and be with them right nearby. The ill friends I cared for were not the strangers I cleaned, wrapped, and sang to overnight. I couldn't have done both more than once or twice.
posted by Dreidl at 6:02 PM on January 8, 2015 [90 favorites]


What a great woman.
posted by ThePinkSuperhero at 6:12 PM on January 8, 2015


The history of that terrible time of the AIDS plague, and a full accounting has not yet been done. The human tragedy, the response and the politics around it - there have been books dealing with aspects of this immense catastrophe - but a full accounting, the consequences we're dealing with to this very day, that still awaits.

There are few people I respect and admire unreservedly, but this woman is to me what is best about humanity. It's especially poignant when juxtaposed to the terrible things that have been in the news over the last couple of days.
posted by VikingSword at 6:12 PM on January 8, 2015 [10 favorites]


Lyn Never: "but those people make me hope my atheism is wrong and there is a hell. I hope she lived/lives it every day."

Luckily, those people are in their own personal hell every living day. And they deserve it.
posted by notsnot at 6:22 PM on January 8, 2015 [2 favorites]


The quotes and comments here are already making me cry, I don't think I can read the links, at least not tonight.

The local HIV services organization here got its start at the beginning of the epidemic in a similar way -- people who got sick in the cities came back to their hometown, but were being rejected by their families, refused service by doctors, and their bodies were being turned away by funeral homes, so the few people who were willing to help had to create services out of love alone. (And even today it is hard to find doctors willing to see and be compassionate towards HIV+ patients, believe it or not.)
posted by Dip Flash at 6:25 PM on January 8, 2015 [3 favorites]


Thanks for this post.
posted by rtha at 6:29 PM on January 8, 2015


I posted a link to the NPR story on my FB wall with with the following quote, "Matthew 25:40 -- As ye have done it to unto one of the least of my brethren, ye have done it unto me."

I was raised a born-again Christian. I came out as a lesbian in 1981, when I was 20. I believe Jesus would have cared for men dying of AIDS whether they were gay or not.
posted by elmay at 6:37 PM on January 8, 2015 [13 favorites]


(And even today it is hard to find doctors willing to see and be compassionate towards HIV+ patients, believe it or not.)
I have a friend in North Dakota who was diagnosed with HIV last year. He eventually left the area, because he couldn't find a single doctor in the entire goddamn state who was knowledgable (or even cared about) modern treatment options.

The horror has not yet ended, and we do not deserve to give ourselves a pat on the back.
posted by schmod at 6:38 PM on January 8, 2015 [8 favorites]


Stories of people like Ruth should be compiled into a great tome entitled "Christianity: How To Do It Properly".
posted by mrjohnmuller at 6:39 PM on January 8, 2015 [23 favorites]


. . . a full accounting, the consequences we're dealing with to this very day, that still awaits.

Spending some time with the GLBT Historical Society of Northern California's AIDS obituary database hints at the scope of the loss. It's just overwhelming.
posted by ryanshepard at 6:40 PM on January 8, 2015 [2 favorites]


She is a saint and deserves to be remembered as such. My God.
posted by Hermione Granger at 6:41 PM on January 8, 2015 [6 favorites]


It was only a few years ago that this school paid $700,000 to the family of a child who they rejected because he's living with HIV.
posted by roomthreeseventeen at 6:41 PM on January 8, 2015


The history of that terrible time of the AIDS plague, and a full accounting has not yet been done. The human tragedy, the response and the politics around it - there have been books dealing with aspects of this immense catastrophe - but a full accounting, the consequences we're dealing with to this very day, that still awaits.

Yes.

I see people who said or did - or didn't do - certain things during this exact period that either led to peoples' deaths, or made their remaining days horrid and stigmatized and lonely. And those people got to walk away from it.

That's part of the full accounting. And part of that is forgiveness, too. But, holy shit...how do you...

She recalled the mother who called Burks up and demanded to know how much longer it would be before her son died. " 'I just want to know, when is he going to die?' " Burks recalled the woman asking. "'We have to get on with our lives, and he's holding up our lives. We can't go on with our lives until he dies. He's ruined our lives, and we don't want people up here to know [he has AIDS], so how long do you think he's going to stay here?' Like it was a punishment to her."
posted by mandolin conspiracy at 6:43 PM on January 8, 2015 [2 favorites]


Before she's gone, she said, she'd like to see a memorial erected in the cemetery. Something to tell people the story. A plaque. A stone. A listing of the names of the unremembered dead that lie there.

This should be crowdfunded. I would pay into this.
posted by mrjohnmuller at 7:05 PM on January 8, 2015 [13 favorites]


What an amazing woman!

I can't imagine anything my children would do that would make me completely abandon them, especially if they were calling for me as they were dying. I cannot wrap my head around that level of hate, and knowing that it was (is) shared and promoted by our political and religious leaders makes me terribly sad.
posted by bibliowench at 7:13 PM on January 8, 2015 [6 favorites]


" how she sometimes wonders if her choice to help AIDS patients as a young woman, and the ostracism that brought, may have kept her from being everything she could have been."

What more could she have been than what she is? What more could anyone have been? Literally a saint.
posted by Eyebrows McGee at 7:24 PM on January 8, 2015 [14 favorites]


I wonder about the younger generation and their impressions of HIV. I am sure there is a generation that has *no idea* what it was like then, and it would be hard for me to explain it. I came of age in the 80s in San Francisco and even there, the openly accepted, tolerated, even promotion of shunning those with HIV is unlike anything since. I worked as a volunteer at San Francisco General giving shaves to patients on the AIDS ward because there was a shortage of people willing to work with sharp instruments around these patients. At San Francisco General Hospital. My mom initially threatened to not let me in her house until I'd been "checked out." This was long before I was thinking of going into medicine and it's when I had my first experiences with the intersection between health care and basic human dignity and it was my first experience with death.

The love that I witnessed in those days, and the anger, the raging anger, at people who ought to know better. What was called for was basic Jesus kind of behavior, and it was so plainly obvious how fucked society was -- one time a preacher man made it onto the ward and threw Christian comic books at the patients from the door way because he wouldn't go into the room or talk to these people. How would you explain this to someone who was born in the 90s?

is so very true. I was a teenager during the height of the epidemic, and I could never understand how people could think gay relationships were somehow less, or not real, because of that.

This was when I decided that being gay was normal, and natural, and a good thing. To see a dying man's partner's face twisted in pain over his lover's suffering, to see the lengths people went to and what they were made to endure just to do the kind of things that straight married people do and take for granted. That's the love and commitment this straight person wanted.

It would be so hard to explain to someone who wasn't there.

My wife takes care of HIV patients almost exclusively (she's the medical director of Bailey Boushay House mentioned above, Hi Dreidl!). She comes from a large family of doctors. One time we were sitting at dinner at a gathering, this would have been late 90s I think, and her ultra rich urologist uncle from the Deep South announced, knowing his audience, "I won't take care of patients with AIDS, I have enough patients and why should I take the risk?" There was a very ugly discussion and it created a huge family rift among all the doctors that lasted past rich Dr. Uncle's death and continues today.

Now that gay marriage is legal in most civilized places, how do you make people remember what it was like when highly educated family members stopped talking to each other because one side saw a moral imperative and the other was willing to deny millions of people their basic humanity?
posted by Slarty Bartfast at 7:33 PM on January 8, 2015 [39 favorites]


Slarty Bartfast, silly as it might be, I go back to the Oprah episode from 1987.
posted by roomthreeseventeen at 7:36 PM on January 8, 2015 [6 favorites]


Once, a few weeks before Billy died — he weighed only 55 pounds, the lightest she ever saw, light as a feather, so light that she was able to lift his body from the bed with just her forearms — Burks had taken Billy to an appointment in Little Rock. Afterward, they were driving around aimlessly, trying to get his spirits up. She often felt like crying in those days, she said, but she couldn't let herself. She had to be strong for them.

"He was so depressed. It was horrible," she said. "We were driving by the zoo, and somebody was riding an elephant. He goes: 'You know, I've never ridden an elephant.' I said: 'Well, we'll fix that.' " And she turned the car around. Somewhere, in the boxes that hold all her terrible memories, there's a picture of the two of them up on the back of the elephant, Ruth Coker Burks in her heels and dress, Billy with a rare smile.

posted by jason's_planet at 7:52 PM on January 8, 2015 [14 favorites]


The history of that terrible time of the AIDS plague, and a full accounting has not yet been done. The human tragedy, the response and the politics around it - there have been books dealing with aspects of this immense catastrophe - but a full accounting, the consequences we're dealing with to this very day, that still awaits.

Actually, it has, or something has that's as close as we're going to get for a long time. And the Band Played On details the tragedy microscopically, holds people accountable, and names names, and it is required reading, even after all this time. And Randy Shilts was another victim of the very tragedy he wrote about so well.
posted by blucevalo at 7:54 PM on January 8, 2015 [12 favorites]


I can't read this. I grew up through the epidemic, and came of age (sexually speaking) around or right after its crest, when things like AZT were promising new lives.

When I was in middle school, my string quartet played once a month or so at an AIDS hospice here in town. There was this sort of ongoing slow tragedy where we'd see old and beloved faces--like the one guy, whose name I shamefully don't remember, who always asked us to play Eine Kleine. And then one month... gone. I'm pretty sure all four of us were crying when we played it again.

And that cemented two things for me: if you turn your back on your child you are an irredeemable asshole. Nothing will make up for that. Ever. And, condoms. Christ it is terrifying (and while PrEP is great it's not a panacea) to see how many younger people, the people who never saw how awful it got, who walk past AIDS memorials not knowing a single name on them, how many of them just treat condoms as totally optional.

This woman... There are no words for what she has done.
posted by feckless fecal fear mongering at 7:57 PM on January 8, 2015 [10 favorites]


True, blucevalo. Also, How to Survive a Plague, The Normal Heart.

Those two, plus And the Band Played On should be required reading/viewing for all young gay men.

Recently had lunch with an old boss of mine, and he said to me that his young (18-year-old) son had just come out. "Any advice?" he asked, me being the only gay dude he really knows. "Yes. AIDS is not magically over, despite cocktail drug therapies and PrEP."

"I've already told him to wear a rubber."

"Yep. Still sound advice. Also, you got Netflix?"

"Yeah."

"Watch How to Survive a Plague with him."
posted by mandolin conspiracy at 8:08 PM on January 8, 2015 [7 favorites]


Some people are expert humans, admirable, miracles in the lives they touch.
posted by Oyéah at 8:10 PM on January 8, 2015 [3 favorites]


hints at the scope of the loss. It's just overwhelming

New York City. 1995. 8,000 AIDS-related deaths per year. And rising.

That's like having 9/11 happen every few months.
posted by schmod at 8:10 PM on January 8, 2015 [6 favorites]


This should be a movie. It would be a great movie. It would teach people about those years. It would make people cry. It would honor a hero. And hopefully it would show a few people how wrong it is to refuse a call from your dying child, and make that happen a little less.
posted by alms at 8:25 PM on January 8, 2015 [6 favorites]


Everyone should see We Were Here, too.
posted by rtha at 8:26 PM on January 8, 2015 [8 favorites]


I was talking to a queer anglican priest i know, and he would talk about how roman catholic clergy would come to the hospice in the back of a private car, not an ambulance, and be smuggled into these shelters, so no one would know they would die and their obits would say pneumonia or cardiac arrest, or a long illness, and their corpses would be carried back to other hospitals, so we could pretend they didn't have aids.
posted by PinkMoose at 9:31 PM on January 8, 2015 [7 favorites]


A girl I went to junior high with, her mother died of AIDS (in 1990, I think) while we were in junior high, contracted via a blood transfusion. It's not usual to print the cause of death in obituaries around here, but she insisted, because she had gotten to know a lot of other AIDS patients during her illness, and she wanted to publicize that married suburban mothers of four can get it too, and try to fight the stigma that way. I thought that was very brave.

A teacher in our community had died the year before of AIDS; even the junior high kids knew his "friend" was his partner and they were gay, but it wasn't polite (at that time) to speak of it, so we were supposed to keep up the fiction they were good friends and roommates. (As it was no longer criminal but it wasn't condoned by society, so everyone participated in these polite fictions so nobody got caught out, I guess. Seems so strange now.) Anyway, he had died of AIDS as well, which everyone sort-of knew but nobody said; the official story was that it was complications of pneumonia. My friend's mom had been influenced by that, my friend said, and that his last weeks were more separated from people than they could have been, because of the stigma, and she could try to help fight the stigma by making her obituary front-page news by stating very forcefully, "It's not just a gay disease; I'm a regular mom and I got it too."

There was a great deal of pearl-clutching panic over the fact that she got it from a blood transfusion (because GAAAAAAAAH) but I do remember the local rhetoric about AIDS cooling down a bit and being less fear-driven and more compassionate.

It was a strange time to grow up; we learned about it in sex ed with movies with guy with balls on their head playing cells, but by the time I was old enough to BE sexually active, it was pretty well established that condoms prevented transmission, and that there were treatments to manage the virus. So when I was little-little it was this strange, rolling nightmare I was only half-aware of because I was too little, and because adults only referred to it in sideways ways and using euphemisms; when I was in elementary school I was being indoctrinated by the early CDC messages about universal precautions and whatnot and killer T cells and how the virus hijacks your immune system, and then later condoms; and by the time I was old enough for it to matter, the sense was "a condom controls it, be smart."
posted by Eyebrows McGee at 9:54 PM on January 8, 2015 [8 favorites]


Another excellent documentary is Silverlake Life: The View from Here, (youtube) though it's very tough to watch. Essentially, a filmmaker with HIV in the early '90s decided that his final film project would be to document his decline and death. It's really powerful and totally excruciating to watch.
posted by Blue Jello Elf at 10:33 PM on January 8, 2015 [3 favorites]


"how she sometimes wonders if her choice to help AIDS patients as a young woman...may have kept her from being everything she could have been."

What more could she have been than what she is? What more could anyone have been?


Well, one of her childhood friends did become President of the United States. That's liable to give anyone the occasional midlife crisis or George Bailey moment.
posted by Iridic at 10:54 PM on January 8, 2015 [3 favorites]


Aside from the direct experiences in this story and thread (and oh my god what an amazing post/story/human being), here is a little tangential piece of experience that shows just how strong and deep the denial about the AIDS epidemic was: this is what it was like for this teenager growing up in the deep south during this epidemic, 1988, 10th grade Biology. Wonderful teacher, veteran, rigorous, smart as hell, take-no-shit, old-school, lecture-mode science teacher. Always handwrote his lecture notes on an overhead as he delivered the lecture.

We were in the unit on viruses, what they are, how they work, so forth. To conclude and contextualize the unit, one day he delivered a lecture on recent and contemporary viruses that were plagues, or still dangerous. Of course, HIV/AIDS needed to be at the very top of the list, and, as a class full of 15-year-olds, we needed this information very much. However, at the beginning of the school year, our local school board decreed that no Biology teachers could discuss the AIDS epidemic or the HIV virus, not even to mention it by name.

So he's going through his list, ticking off the 20th century highlights, influenza, polio, and he gets to the last one and lists it thus:

___. ___. ___. ___.

Four blanks, four periods. He then said something along the lines of 'this last illness is the most important one, and the most important thing I have to talk to you about all year. It's an epidemic among us right now, an epidemic that is being ignored. In fact, I have been specifically forbidden from naming this illness or virus to you, so we'll call it blank-period-blank-period-blank-period-blank-period, and it is caused by blank-blank-blank.' He was angrier than I'd ever seen a teacher, and it was clear to us all that something had gone down, and that our beloved, hard-ass, awesome Biology teacher was furious about it.

So he proceeded to tell us how the virus works, why the epidemic was so worrying, and why we should be informed, aware, and protect ourselves. He educated us about it anyway, and in doing so also delivered a searing meta-lesson about moral and political realities of the time.

He obsequiously avoided naming names, so followed the letter of the directive....but not the spirit. Turns out that he told the school board that he would avoid naming names as directed, but that no one could tell him what material he could or couldn't teach, and that if they tried to discipline him, he would retire immediately. Of course, they did, and he did, that was the last year he taught. In adult hindsight, it's clear it was also likely very personal to him (lifelong 'bachelor' in his early 60s, a couple of other tells). I am lucky to have had a teacher so principled that he did the right thing and sacrificed his job to teach us what was happening around us (this incident was significant in changing this directive not long afterward, thankfully).

Small story, and by far among the least of the suffering of that time; but wow did it make clear to 15-year-old me how fucked up the world can be, and how people can blithely make horrible things so much worse.
posted by LooseFilter at 11:18 PM on January 8, 2015 [42 favorites]


Thanks for posting this, restores some faith in humanity as not all rotten. Ruth is a true saint, not the plaster kind.
posted by mermayd at 4:04 AM on January 9, 2015 [1 favorite]


No words. Just: thank you for the post, and thank you, Ruth Coker Burns. God bless you.
posted by GrammarMoses at 4:46 AM on January 9, 2015 [1 favorite]


When I read stories like this I can't help but think of the uncaring mothers and fathers, those who slammed their doors on their gay kin dying of AIDS. Many of these people, who turned their back on their children when they were most in need, are still living.

Do they feel regret? Do they feel shame? Have they forced themselves to forget, or to invent justifications?
posted by duffell at 7:00 AM on January 9, 2015 [4 favorites]


FYI -- The Arkansas Times has linked to this post on their blog and featured Dreidl's comment.
posted by Taystee at 7:22 AM on January 9, 2015 [7 favorites]


One of the things (among many) that struck me was the juxtaposition of how people approach religion. There are hateful people who use it for hate, who use it to justify abandoning their own child when they are dying, and then a loving women who used that same religion to provide love and care for people who were at first complete strangers. If there is a heaven and hell, I have no doubt of who is going where.
posted by ElleElle at 7:36 AM on January 9, 2015 [5 favorites]


I'm so glad to hear that plans and donations for a memorial at the cemetery are underway.
posted by The Underpants Monster at 7:58 AM on January 9, 2015


I'm glad Burks' story is being told, both because she is a saint and all these stories should be told. The anecdotes collected in this thread should also be gathered and told as well. We shouldn't lose this history.
posted by immlass at 8:29 AM on January 9, 2015 [2 favorites]


Thank you for sharing this. I could've gone my whole life and never learned about this woman, and now she's one of my heroes. I hope I am not so dimwitted and heartless that I miss the ability to have half the life she lived. She's a modern saint.
posted by scunning at 8:58 AM on January 9, 2015 [1 favorite]


There are some terrible people out there and a lot of them use religion as an excuse. Ruth Coker Burks is a hero!

But not all of the parents shunned their kids. I came of age just as the epidemic was becoming widespread. There were guys I went to high school with, who came home sick in their 20s and whose parents DID care for them.

I have seen some speculation that this is one of the things that has led to the increased acceptance of homosexuality, and helped the cause for gay marriage. Straight-identified people in places that had always simply exported their gay kids and never had to think much about them again, had those gay kids return and depend on them. AIDS sufferers became gay ambassadors in the hometowns they'd never have returned to if they'd stayed healthy, and any families who didn't double down on the hate, became highly aware of the issues.
posted by elizilla at 9:44 AM on January 9, 2015 [1 favorite]


Also, in addition to what I mentioned above, Larry Kramer's writing (including The Normal Heart, mentioned above by mandolin conspiracy). Essential. He uses the words "holocaust" and "genocide" -- he can be strident and belligerent, but anyone who lived through the epidemic at its height and is still alive without being strident and belligerent, or at least confounded that this event, which in historical terms is so recent, has passed virtually into enforced oblivion in the minds of people who weren't there, is probably comatose.

What is all too easily forgotten is that by 1994, AIDS was the leading cause of death for all people in the US aged 25-44. That's not that long ago. All the people lost, my God. And all the callous neglect -- not just the parents who kicked their kids out and turned their backs on them and disowned them, but the shameful cowardice, ignorance, and fear-mongering of the media (from the New York Times on down the line) and the hostility, indifference, and contempt of officials at the highest levels of government.
posted by blucevalo at 9:55 AM on January 9, 2015 [9 favorites]


Just to be clear, I was contrasting my few and intermittent acts, with the ongoing care for the living, the dying and the dead that Ruth Coker Burke provided.

Ruth Coker Burke is the very image of a righteous person. There's a Jewish folk belief that any time in the world there are 10 secret Tzaddikim, righteous people who are helping bring about the better world of peace and justice to come. I suggest Ruth Coker Burke is one of those tzidkanit, righteous women.
posted by Dreidl at 10:33 AM on January 9, 2015 [12 favorites]


I first started doing hospice volunteer work in the mid-80s, when incredibly little was known about AIDS. I remember, in maybe 87 or 88, doing a weekend conference with Stephen Levine, who was leaps and bounds ahead of anyone else who was working with the dying at that time. One of the things he mentioned over the weekend was that, unlike the Influenza Pandemic of 1918 where the affected community became splintered and fearful of one another, staying inside, wearing masks, being unwilling to reach out, the AIDS epidemic brought a community closer together. He talked about this community of people, gay men, who had previously appeared to be driven solely by moment to moment pleasure and who suddenly without any hesitation turned into a group of the most compassionate caregivers with incredible tenacity and a willingness to be present with fear and pain and the unknown.
posted by janey47 at 10:40 AM on January 9, 2015 [8 favorites]


I grew up just outside of this place, was a teenager in the period she's referring to, and had no idea. My face is wet. Memories, nostalgia, forgotten anger.

More people should read the Arkansas Times (so thank you for sharing), it's got and has had some of the best journalists in the business. Max Brantley, long time senior editor, is very truly the first person I can remember who stood up in front of a not-so-welcoming audience (at Boys State), where I was in the audience, and very vigorously defended gays and railed against the political and religious fervor of condemnation. I came out to my friends and family very shortly after that experience, and I still write him thank you notes about once each year. I'm not unique in this at all, and he's written about the experience of being a hopeful icon to so many Arkansawyer kids over the years with touching aplomb.
posted by late afternoon dreaming hotel at 3:12 PM on January 9, 2015 [6 favorites]


Slarty Bartfast: one of the ways you can get across what it was like is to keep telling these stories. All the stories in this thread are part of this collective memory.

I was far from ground zero of this horror at the time. I came of age/came out in the mid-90s. Where I was, safe-sex messaging was at its zenith, but my younger years were irrevocably marked by this notion that being gay was somehow a dead end, a death sentence. What was in the mainstream media and public discourse in my smallish Ontario city in, say, 1990 told me that I could expect death. Even the more well-meaning liberal-ish stuff that was out there (Philadelphia, gawd - yeah, yeah it maybe made audiences empathize a bit with a gay character, but it was one who never kissed his partner, and was played by a straight actor) said "it doesn't get better. It gets a hell of a lot worse."

But one thing that happened to me in high school is that I became an ardent student of the religious right. I followed the antics of Jerry Falwell and Pat Robertson and Jesse Helms because I somehow sensed that knowing your enemy was going to be one hell of a good survival tool. The thing that all of that hatred and animosity obscured, of course, was all the kind, good work being done by people who had no other choice but to do it. Caring for sick friends and lovers, even when sick themselves, or doing it by choice because they knew it was the right thing to do. The more of these stories I hear, the better that history gets, because it tells me that even when things are really bad, hopeless even, people will step up and do the right thing.


So what I'm trying to say is that, as someone who's tried to learn as much as I can about what the hell happened because I think it's important to know and remember, and educate others, the more I learn about how good people can be sometimes. The stories in this thread really bear that out.
posted by mandolin conspiracy at 3:45 PM on January 9, 2015 [4 favorites]


We need to be reminded from time to time that there are people in the background who are quietly changing the world for the better.

I'm so glad this lady's story is being told; it's rare for the best of humanity to get recognition. Her story is the story of what we're supposed to be striving toward - honest compassion without judgement.

I think the memorial is going to make her very happy and I'm glad for that. I think also that there will be an outstanding reunion between Ruth and her friends one day and I'd like to be there to see it. I feel as though I've seen a little glimpse of something much bigger than life today through the tears I can't seem to choke back.

Thank you for posting the story of Ruth's cemetery.
posted by aryma at 3:55 PM on January 9, 2015 [4 favorites]


She should receive a Presidential Medal of Freedom. As to religion, I couldn't help seeing her stunning embodiment of Christianity, in contrast to those claiming to be Christian and embodying the opposite: lack of compassion. Not all were so back then. I was in a Catholic AIDS hospice group in 1986 and it seemed so matter of fact: of course this is what Jesus would do -- bathe those dying; visit with them when others wouldn't; provide words of comfort even when they couldn't speak. I watched a few of them as they were very close to death. Anybody who thinks Christianity, or any religion, calls for turning your back on that doesn't understand religion: the best of humanity, not the worst.
posted by rhnyc1 at 7:38 PM on January 9, 2015 [9 favorites]


Amen, rhnyc1.

I just found out this morning while looking for something unrelated that a friend -- one who meant a great deal to me, but whom I'd not been in touch with for years, unfortunately -- passed away two years ago from complications related to AIDS, and I broke down in tears.

It's not an epidemic of the past. It's still taking and killing people, every day, and the fact that it's gone out of fashion in the media to talk about AIDS -- or that it's become easy to consider AIDS a "chronic manageable" disease -- doesn't change anything the virus does. AIDS killed an entire generation of men and women who were in the prime of their lives. And it's still killing, silently -- but silence is exactly what helps the virus do what it's evolved to do. That's to kill.

And it's still true that SILENCE = DEATH.

Bless people like Ruth Coker Burks. And people (this is the hospice that took care of my friend) who care for people who are still alive but too sick to care for themselves. Unfortunately, you will never hear about most of these people because they don't seek attention for themselves. They just do the work, help people, and ignore the noise.
posted by blucevalo at 11:12 AM on January 10, 2015 [3 favorites]


Blucevalo -- Maitri is amazing. Your friend was in very good hands <3
posted by janey47 at 12:10 PM on January 10, 2015


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