Category Archives: HIV/AIDS

Gay History: Leigh Bowery

Leigh Bowery and Boy George.

“I will always remember the moment when a pretty faced, slightly chubby blonde boy turned up at the door of The Cha Cha Club wearing a rather hideous blue velvet cape. He told me his name was Leigh Bowery, followed by, “Graham sent me to you.” It was late October 1981.

My friend Graham Parnham had met Leigh at Andrew Logan’s Alternative Miss World earlier that month. Leigh didn’t know anybody on the club scene in London so Graham had sent him along to my club telling him that I would look after him. “You’ll like him.” Graham had told me, “. . . he’s Australian and a bit bonkers.” Graham was right. I liked him immediately.

Leigh had a generous spirit and sharp wit, was extremely polite and charming. I told him I’d be glad to let him in to the club so long as he promised me that he would never wear that velvet cape again. We laughed, the first of many laughs that we were to have.

It would be two or three years before Leigh started creating looks and dressing in his extraordinary and very outrageous style. Back in 1982 and 83 he wanted to be a fashion designer and would create 1940s inspired pyjama suits for me, Trojan and himself.

He’d make me dresses to wear to the club, shrewdly knowing that they would be photographed aplenty. He’d hand write labels with indelible laundry marker and stitch them into his creations. I would look forward to the Tuesday afternoons when Leigh would arrive with something new to wear out that night.

The world quite rightly remembers Leigh Bowery as the brilliant and unique performance artist that he became. Though we remained friends throughout his life, for me there is a sweetness to remembering our close friendship of those early years and the extraordinary evolution of the pretty faced, slightly chubby blonde boy in the hideous blue velvet cape.

We lost Graham to AIDS in the spring of 1994.

We lost Leigh the same year, on New Year’s Eve.”

— by Scarlett Cannon

Sex, sin and sausages: the debauched brilliance of Leigh Bowery

His shocking shows – featuring births, enemas and vomiting – thrilled and appalled. Two decades after his death, why is the influence of this 80s nightclub legend still so pervasive?

‘He was modern art on legs’ … Leigh Bowery in a jacket he customised. Photograph: Mark Baker/Photoshot/Getty Images

e was painted naked and sprawling by Lucian Freud. He “gave birth” to his own wife on stage, using sausages as an umbilical cord. And he was the star turn in Taboo, perhaps the most debauched nightclub Britain has ever seen, hosting the revelry with his face painted blue, his nose and nipples pierced and his outfit as intimidatingly outlandish as possible. But there was much more to Leigh Bowery than sheer outrageousness – and his range, daring and influence are now starting to be appreciated by a new generation.

Perhaps the most prominent sign of this reappraisal comes from Australian choreographer Andy Howitt, who is bringing Sunshine Boy, a new show about the nightlife legend, to the Edinburgh fringe this summer. “I was at the National Gallery in Melbourne and there was a big sculpture that said, ‘By Leigh Bowery from Sunshine’,” he says. “I was like, ‘That can’t be the Leigh Bowery from the 80s dance scene.’ It sparked me on a journey to find out about the man.”

Bowery did indeed hail from Sunshine, a suburb of Melbourne with around 10,000 inhabitants. Howitt visited it and spoke to his family, as well as to those in London who had known him. “You have to remember his backstory,” says Howitt. “He only lived in London for 14 years. He sold up shop at 19 or 20 and went straight there and became the icon.” Howitt fed his findings into Sunshine Boy, telling the story of Bowery’s life through dance, spoken word passages, music and, naturally, those showstopping costumes. Howitt’s performance ranges from his childhood to the Taboo years and then to his death from Aids in 1994 at the age of 33.

Umbilical sausages … Leigh Bowery ‘giving birth’ to his wife. Photograph: James Hill/Rex

.Umbilical sausages … Leigh Bowery ‘giving birth’ to his wife. Photograph: James Hill/Rex

As Sunshine Boy suggests, Bowery remains a larger-than-life persona in underground culture, even 24 years after his death. What made him so different from the other 80s club kids? Partly his looks, which still seem strikingly original. As the impresario of Taboo, he wore a different, jaw-dropping outfit every week. There was the shiny PVC mask and matching catsuit, with one larger leg as if in plaster. There was the polka dot suit worn with polka dot face. There were the lightbulbs he’d wear on either side of his face, the coloured drips that would cover his bald head, the merkin he’d place over his genitals. And then there was his wife, Nicola Bateman, worn naked and strapped upside-down to his chest. (Although Bowery described himself as gay, he married his longtime companion and sometime lover Bateman seven months before his death.)

But Bowery’s creativity was not confined to clubs. He worked with the dancer and choreographer Michael Clark, creating costumes and co-starring in his performances. He appeared in the windows of the Anthony d’Offay Gallery, wearing a different outfit each day of the week. He fronted a band, Minty, and – perhaps most famously – modelled nude several times for Freud. On the back of the Freud connection, Bowery hit the mainstream from various directions. He appeared in a commercial for Pepe Jeans and guested on The Clothes Show on BBC One, taking tea in Harrods dressed in a succession of astonishing get-ups to the soundtrack of his hero, drag star Divine.

Bowery also engaged in more conventional creative work. He was an art director on the 1991 video for Massive Attack’s Unfinished Sympathy, a stylist for Rifat Özbek, a costume designer for Culture Club (Boy George would co-write and star in a successful musical about Bowery). His career resists categorisation. Asked what he most deplored in others by the Guardian in 1993, Bowery replied: “The urge to categorise: if you label me, you negate me.” Perhaps Boy George came up with the most accurate description when he described Bowery as “modern art on legs”. He turned himself, his body and his image into an art object, one that walked among us as well as appeared on stages and in the windows of galleries.

“People are always telling me about the time they saw him,” says Sue Tilley, Bowery’s friend and the author of Leigh Bowery: The Life and Times of an Icon. “It was probably only once, but he made such an impact they have never forgotten it.” DJ Princess Julia met Bowery in the early 80s, both part of a crowd that included the artist Cerith Wyn Evans, Boy George, Clark, and Bowery’s friend and frequent co-star Trojan. Julia says Bowery, who started off working at Burger King to make ends meet, quickly became a fixture on the scene: “He was very influential because he was very inventive. He was always coming up with ideas.”

His looks, she says, were often inspired by what was happening in wider society. “The dot face, for example, was a comment on Kaposi’s sarcoma” – the cancer which caused the facial lesions that struck many Aids sufferers in the 80s. “His work was about things like body image or illnesses – and those things haven’t gone away. It confronts you and frightens you and makes you think. It’s very disruptive, to use a word of the moment.”

There is a clear line from Bowery to the performers and punters exploring extreme looks today. Glyn Fussell is the founder of Sink the Pink, a playground for the artistic side of drag culture. He says that while the twentysomethings who come to the London club probably haven’t heard of Bowery, his influence is present. “You see it fashion, you see it in the underground, you see it in mainstream culture, in RuPaul’s Drag Race.”

Howdy … Bowery at home in 1984. Photograph: Steve Pyke/Getty

It is in fashion that Bowery’s influence is most explicit. Rick Owens’ “human backpack” collection in 2015 was a tribute to Bowery carrying Bateman like a papoose. Menswear designer Charles Jeffrey runs a club called Loverboy that stage shows verging on performance art, much like Bowery. And, with his floral gowns and matching face masks, Richard Quinn, the young London designer who had the Queen in attendance at his February show, has clearly been inspired by Bowery.

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For Gareth Pugh, Bowery is a consistent reference. The designer first learned about him in Fergus Greer’s 2002 book Leigh Bowery Looks: “If you go into any suburban art college you’ll always find that book in the fashion section.” Bowery is inspirational, he believes, becausehe “ created his own language. That’s the golden fleece for any fashion designer: to find something they can be known for 30 years down the line – and for it to be so iconic.”

Of course, some elements of Bowery’s work haven’t aged so well, driven by his relentless desire to shock. One of his most infamous looks was called “Pakis from Outer Space”, inspired by the Asian communities near where Bowery lived in the East End and involving blue faces, bindis and nose rings. He made blouses out of material bearing swastikas, used rags stolen from Jewish artist Freud’s studio to make an image of Hitler and appeared, naked, in makeup similar to blackface, for a Minty publicity photo.

This preoccupation with the extreme offended plenty of people. Clark stopped working with Bowery when he insisted on wearing a costume with “a cunt” written on it. Minty saw their residency at the Soho club Freedom cut short because of a show that involved Bowery “vomiting” vegetable soup into Bateman’s mouth.

Perhaps Bowery’s work was radical satire, all part of a life lived without taboos. Shocking people – and perhaps waking them up – was the ultimate aim. Speaking about a show at an Aids benefit, in which he had an enema on stage that sprayed the front row, he said: “I was quite pleased with the hostile reaction. If I have to ask, ‘Is this idea too sick?’ I know I am on the right track.”

“The idea,” says Pugh, “of wilfully doing things that get a rise out of people. He had this idea of something that is bereft of control, for good or for bad.”

A ticket to the mainstream … one of Lucian Freud’s portraits of Bowery. Photograph: Bridgeman Images

“I don’t think he was setting out with a racist heart,” says Fussell. “He was challenging the status quo. It was about challenging what he was seeing on the streets and making it hyper-realised.”

Howitt’s 40-minute show will cover Bowery’s triumphs, disasters and premature death. Bowery found out he was HIV positive in 1988 and died six years later, not long before combination therapies greatly prolonged the lives of those with the disease. “A lot of people say that if he had survived another month, he would have been OK,” says Howitt.

Tilley often finds herself wondering what Bowery might have achieved had he lived longer. “He had a lot of irons in the fire, but he died before anything properly happened,” she says. Bowery may, she muses, have gone “down the path of reality television”. After all, she concludes: “He would have been brilliant on Big Brother.”

‘Nothing Was Ever Out of Bounds’: Leigh Bowery’s Friends Remember the Legendary Performance Art Provocateur 25 Years After His Death

Cerith Wyn Evans, Baillie Walsh, and Lou Stoppard reminisce about their late friend.

Film still from Cerith Wyn Evans, DEGREES OF BLINDNESS (1988). Courtesy of the British Film Institute National Archive.

Artist Cerith Wyn Evans and director Baillie Walsh met Leigh Bowery on the London club scene. To both, he became a collaborator and a close friend—a subject to film, a designer to call on for incredible garments, an artist to admire, a conspirator to talk with for endless hours on the phone. Sometimes he helped them, sometimes they helped him. Always, they recall, he pushed them—not necessarily forward, that would be too expected, but in a new, uncertain direction that was wide, warped, strange, sweeping, and beyond anything they’d planned. Walsh’s collaborations with Bowery include the music video to accompany Boy George’s 1991 song “Generations of Love,” Massive Attack’s “Unfinished Symphony” video from 1991, as well as “Unstitched” from 1990, which shows Bowery having his cheeks pierced and was regularly screened as a backdrop to Bowery’s performances. Wyn Evans’s works with Bowery include the early films Epiphany, from 1984, and Degrees of Blindness, from 1988. Here, they reflect on their late friend with Lou Stoppard.

Cerith Wyn Evans: Baillie, do you remember he had a tattoo on his inner lip that read “mum?” It was facing inwards so that only his teeth or throat would read “mum.” I told him, If he pulled his lip down, to everyone else it read “wuw.” He said, “Yer – wooo!”

Baillie Walsh: I’ve never talked about Leigh before. It was all too close at the time.

CWE: For a while, it felt like there was a load of people who wanted a bit of it all. When someone died and there was too much attention or discussion, Leigh used to say, “Oh, they just want another slice of death pie, so they can look like they have been a part of something.” And knowing what we do know, that he was living and dealing with HIV, those comments mean more.

BW: My relationship with Leigh was private, special, and personal. I didn’t want it to be public property. But now, 20 years have passed—longer, 23 years—I don’t get the same feeling. It’s nice to see how much I remember, together with Cerith, we can see if we can wheedle out some memories—and some laughs hopefully as Leigh was a-laugh-a-minute. I would like to remember more. What I loved about him was how he’d just turned everything on its head. He made you think in a different way. The idea of “fitting in” was abhorrent to him. I want to remember that. I often try to think in the way that Leigh pushed me to, and it’s nice to have a refresher course.

Bustier with hand-sewn crystals by Leigh Bowery, early 1990s. Courtesy of Lorcan O’Neill.

Lou Stoppard: One thing written a lot about Leigh Bowery is that his whole life was a performance, a work of art. Would you agree with that, having known him more intimately?

CWE: Well, it’s yes and no. I always thought he was much more extreme in mufti, or daywear, than he was in the outfits that he wore at night.

BW: That was much more disturbing, I agree. He looked like a child molester.

CWE: There was a vulnerable side to him, which you saw if you were a close friend. He tended to keep his friends apart; he didn’t like the idea of us talking about him. We had to be kept compartmentalized.

BW: He did love to cause trouble. He loved making stories up. He loved to lie. He would tell you someone had died. He once told me that Brad Branson was dead—he is now dead, so I can tell this story. He told me he was dead because Brad had slept with my boyfriend, John Maybury, so he thought I’d like to hear that. He told it to everybody.

CWE: He absolutely adored lying. I remember him telling me a story about Les Child, who was a dancer with the Michael Clark Company, how he was going through hard times—the company had got dissolved, or was on a break, or something like that. He said, “Oh poor Les. He’s making sandwiches in a gay sauna in Soho.” And I said, “Oh you bitch.” I was laughing. It was obviously a total lie. But then two months later, I ran into Les in the street who said, “I’ve taken to making sandwiches in a gay sauna in Soho. I’ll spring back.” It was true! So you never knew.

BW: Leigh loved to muddy the waters. You never knew what was true and what wasn’t.

Still from Cerith Wyn Evans, EPIPHANY (1984). Courtesy of the British Film Institute National Archive.

LS: Can you both recall when you first met him?

BW: I can remember my first vision of Leigh. It was him and Trojan in Heaven nightclub in the “Pakis from Outer Space” blue look. Apart from the look, they seemed very shy and almost demure. It wasn’t an immediate friendship. It took time. Really, I got to know Leigh properly because I started working with him. I took him to Italy to be in a fashion show—and it was that thing of going away with people and becoming friends, him, Big Sue. He made papier-mâché head masks of himself with the drip look he used to do. So, he had 30 models come out as him. It was for a company called Calugi e Giannelli—really tacky, but we’d do anything for a fee in those days, and it meant going away with a crowd. It was over times like that that I got to know him as him.

CWE: I met him around the same time at The Bell, a gay club in King’s Cross. We used to go on a Sunday night. I nearly fell over because Leigh and Trojan walked in, and Trojan was dressed as Sheba with really intense turquoise hands and face. That look—”Pakis from Outer Space”—was like Leigh’s collection at the time. I was a student at the Royal College, it would have been around 1983. I thought: “I’ve got to do something with these people, I wonder if they’ll be in a film.” I went up to them: “Oh hello, I’m a film student at the Royal College, would you ever consider making a film?” They said, “Yes all right then. We’re going to be in a film!” Leigh really took it seriously. Suitcases would arrive with makeup. Consummate professionals, from the word “go.” And they would do anything. The film was Epiphany. We shot the whole thing on tape on huge machines that had been given by the BBC to the Royal College. You had reels of two-inch video tape—the quality was insane. But these cameras were huge and so heavy, big pneumatic things with enormous cables that would almost move around on their own. We had three cameras on Leigh at all times. He said, “Which camera should I look at? The one with the red light?” And I said, “The red light is going to be on all of them; we’re recording everything, no takes.” He just loved that atmosphere—constantly being watched, reinventing himself, and rethinking his position. You know when you see the cliché of a model or David Hemmings pretending to be David Bailey—Give me this! Give me that!Leigh was like that. Going from look to look, posing and moving. It was just heavenly to witness. It was raw. There was a levity to it. But also, there was a sense of stagecraft and something studied—it was deeply sincere, however much of a laugh it was. The pain he went through and the discomfort to get the looks. It was an exuberant celebration on so many levels.

BW: He never thought he had a look unless it was painful. If it was painful, it meant he was taking it further than anyone else would. One night, we went to Heaven when he was doing the “Mexican mask” look and wanted his profile to be as flat as possible so you didn’t get any nose. I had to take him out because he had a complete panic attack, which you rarely saw with Leigh. He was in proper, incredible pain. You couldn’t unzip the mask because it was so tight. His voice was muffled, and his face was squashed: “Get me out of this!” I took him and Nicola Bateman back to my flat, and I got pliers and scissors to try to undo the zip. I couldn’t get them into it because it was so tight against the skin. Somehow in the end, he got out of it.

CWE: There would be bruises. He would be cut to shreds after a night out.

BW: Each time he went out, he wanted to push it further, getting more and more ambitious. There were some looks he would test out and never do again. He would always gauge the response. If he was just laughed at then that was a disaster. There had to be something more thought-provoking than that. It had to be challenging.

LS: What did he want people to feel? Disgusted? Scared?

BW: Both of those things. He liked laughter too—but not just laughter.

CWE: He was physically so very strong, and often he’d be on insanely high shoes. He was so massive. One of the things he liked doing at Taboo was kicking the ceiling lights out—bang! Glass in everyone’s drinks.

BW: His behavior at times was so extreme. He would pogo around the dance floor—he was such a large being, so it was really intimidating, especially as he was dressed in such a way, with the merkin on and something covering his face. But it was never aggression in a typical sense.

CWE: Never angry.

BW: No, I don’t think I ever saw Leigh angry.

LS: Was he a private person in some ways? Is that part of the reason he performed so much with his own identity, in order to keep certain things hidden?

BW: Well he kept his HIV status from me.

CWE: Me too.

BW: That was obviously very private. But I never felt that Leigh kept secrets much from me, which was why I was so surprised when I did find out that he was HIV positive. That was such a massive thing, especially at that time, because there was nothing you could do.

CWE: Fear and paranoia was everywhere.

BW: We were all watching hundreds of people die around us. When you watched someone die, you were not only very sad you were also terrified—Is that going to be me next? I think Leigh felt that very strongly. I think Leigh didn’t want to be labelled as someone with AIDS. Leigh was much more important, much more than that. And I think that if he had announced that, and if it had gone out into the world, he wouldn’t have been given the freedom to be other than that.

CWE: You look back and think: “Why didn’t I see it?” It was so obvious. We formed a band for a while, me, Leigh and Angus Cook, who was my boyfriend at the time. We didn’t play any music. We were called Magpie Shmagpie. Sue Tilley took the press photographs, which we did on the stairs of the sexual health clinic on Dean Street: all of us coming out of the door, posing with jackets on our shoulders—Leigh’s idea, obviously.

BW: He would talk about it hypothetically: “What if? What am I going to do if I’ve got AIDS?” But everyone was saying the same thing. We lived in fear.

CWE: I remember him on his deathbed saying: “I didn’t even bloody lose any weight.”

LS: I’ve heard he started rumors when he knew he was dying that he was going off to live in a different country.

CWE: He’d say he was going to Papua New Guinea to research anthropological tribe masks. After he died, we went to Patisserie Valerie and spent about 200 quid on cream cakes and had champagne. Sue Tilley said no one was allowed to cry.

Still from Cerith Wyn Evans, EPIPHANY (1984). Courtesy of the British Film Institute National Archive.

LS: I wonder what he would do if he was alive now. Because to play with your identity is easier now than ever, with all these different platforms.

CWE: So many years have passed—it’s a different world. The implications of what Leigh started off doing, and his ways of communicating about things, have become so mainstream, in a way.

BW: Leigh would have morphed into something else. There were so many different stages he went through during my friendship with him: he started in the clubs with no idea of entering the art world; he wasn’t creating art; he was creating attention for himself. Then that ambition changed when he got the gig with Anthony d’Offay gallery, and then later he met Lucian Freud through you, Cerith.

CWE: We sort of thought, “Oh it’ll be fun to mess things up for Lucian—we’ll introduce you to Leigh and then you’ll have to paint sequins!”

BW: I feel that Lucian’s work did change after he met Leigh. Part of Leigh’s thrill was always challenging his friends, and of course he did that to Lucian. I think you can see Leigh’s influence in those pictures.

CWE: Absolutely you can. Lucian was hugely affected by Leigh’s death. He was so so close to him, he really looked up to him.

BW: I love the fact that Lucian still looked up to him even after they found a stolen picture of his in Leigh’s flat. Leigh was stealing 50 pound notes every day when he went in there.

CWE: Lucian would think that that was just wonderful. He would think it was the most noble thing to do!

BW: They deserved each other. These two really strange characters coming together—it was a match made in heaven.

LS: Baillie, talk to me about working with Leigh on your films.

BW: My favorite project was the “Generations of Love” video with everyone in the street. Leigh just loved being a hooker on the street.

CWE: With the blonde wig and the “Come to Bed” t-shirt.

BW: Leigh was the one who got me thinking: “Oh, it’s a pop video, but I can make a porn video.” It was Leigh’s influence on me that kind of pushed me the whole time. He was a great doer, always with massive enthusiasm. It was a great collaboration. We just did it. He loved getting everyone in character and in dress. He’d be pushing Sue: “Get your tits out!” He got everyone—Rachel Auburn, Les Child, Michael Costiff, Talulah—in their costumes and their appropriate looks. Les Child fought every step of the way because Leigh was trying to cover his face in Vaseline. I would say that that was our most successful collaboration. His influence pushed me to a place that I thought was really interesting for a pop video.

CWE: That video is sort of sad also in a funny way. It’s mournful. There’s a melancholy at the heart of it, this idea of generations of love.

BW: I think the last project we did together was the Massive Attack video. That shoot was the first and only argument I ever had with him, and I don’t think he ever really forgave me. He’d made a dress for Shara Nelson, and we needed to find some way to cover up the earpiece that we needed her to wear. The collar wasn’t high enough, so he suggested a wig. She looked ghastly in, but of course Leigh loved it because it was so wrong. It got very awkward in front of the band. Leigh was determined, and I had to finally put my foot down. Leigh never really wanted to be told what to do. We were never quite the same after that trip to LA. Before that, we’d been two hours on the phone to each other everyday for seven years. But then also our lives were changing. Leigh was working with Lucian—his interests were changing. Our common interests were drifting.

CWE: He’d never do what he was asked to. At that time, I did some pop videos for The Fall. And we also did a play together at Riverside Studios where he played a Chicago mafia boss. Leigh would improvise lines, and every night he would stretch his lines by quite a few minutes by writing some “new material.” I can remember him coming on doing dances or singing songs, and then going into his lines. Mark E Smith would be grumbling and laughing. One thing that has always stuck with me and has been a barometer for me ever since: Leigh would look at something and say, “Yer, it was all right. But where’s the poison?”

Almost like a kind of homeopathic thing; you would need this poisonous kernel, so that it could be transformative, something in it that was deeply subversive and could dissolve hierarchies.

BW: Exactly. As much as he did work for me, I also did a lot of work for him. He would engage you as the magician’s helper. One of my strongest memories of him is when he did the AIDS benefit at the Fridge. It was his first ‘douche’ show. He comes out dancing with a corset and a merkin. I think it was to ‘Nothing Compares to You’. He’d rehearsed it so he’d lie back on a plinth, open his legs, and squirt a fountain of water from his arse. But he hadn’t rehearsed it with a corset. So, when the time came, he couldn’t lean back. So he goes to the front of the stage and bends over to squirt over the white table cloths. Of course, he was very nervous so the water wasn’t completely clean. He’s squirting shit all over the front row of an AIDS benefit. For the second part of the piece, he put a great big skirt on that I had to get under (as I was the back of the horse, if you will). I’m meant to get him onto my shoulders so he could be ten feet tall waving in this giant skirt. I get under and it’s covered in shit, slipping around everywhere. But it’s show business—not a choice! He was properly freaked out after that show; he knew that he had pushed the poison to the limit as people were horrified. And it did cause a scandal. He’d shat on the front tables at an AIDS benefit! That was Leigh when he really did think for a minute that he’d pushed it too far. There was fear—and it was rare that you saw Leigh with fear.

CWE: If you did that now, you’d probably go to prison. Anything that was inappropriate—Leigh was like a magnet. Everything inappropriate was good. Everything appropriate was bad. It was pretty clear cut. He was really an anarchist.

BW: That’s why John Waters’s films so influenced Leigh. Divine in Female Trouble was a benchmark for Leigh in so many ways.

Still from Cerith Wyn Evans, EPIPHANY (1984). Courtesy of the British Film Institute National Archive.

LS: Was it ever tiring being friends with someone who was that unrelenting in their commitment to subversion?

CWE: No. Because he was also so sweet and gentle. Like Baillie described—I was one of the people on the other end of the phone for an hour or two a day. We’d sit there watching television and he’d be like—What is Lorraine Kelly wearing?

LS: Did you ever feel embarrassed by him?

CWE: I can remember being on holiday in Cornwall with Leigh. Sue Tilley drove Leigh down; she couldn’t get into the car because Leigh had made a frock to wear in pink dayglo. It was like a Molly Goddard dress but the size of a flat—with all this tulle bunched into the car, the entire car was full. As soon as he arrived, he ran into the sea, and it soaked up so much seawater he nearly drowned. It was completely hysterical. I can remember this one dreadful situation: Leigh would do anything to embarrass Sue in public—it was one of his absolutely favorite things to do. So, we were alone in this grand Catholic church. And this lone nun was walking towards us in her habit. Sue was going, “Leigh, no. No. No.” Sue—she’s a big girl—and she’s trying to hide behind the column in the church. And Leigh is going at this 90-year-old woman in her habit, “Oi! My friend wants to eat you out!” The nun just shuffled away. “Bless you my child.” The strange thing is it never wore you out. He was like quicksilver, also. In the next moment, it would be a completely different thing—he’d be helping you make a pea soup. He thought it was hilarious that you had to buy a huge sack of peas to make a small bowl of pea soup.

BW: I was never embarrassed by Leigh because Leigh was never embarrassed. The joke was never on Leigh; he was making the joke, so there was never painful embarrassment.

CWE: But there would be times when he would be vulnerable. He’d open up on the phone and say, “Oh, I don’t know what I’m doing.” He wasn’t always high octane.

BW: Leigh really led a life on the telephone. Cerith was part of that. I was part of that. Sue was part of that. A lot of our lives were spent on the phone—hours and hours a day. That’s not high octane or a performance. That’s a proper relationship.

CWE: You’d talk about things in the news…

BW: …or sometimes there was just silence. And you’d hear a sewing machine going.

LS: The construction of his garments was incredible. People often talk about how great he was at making looks, but perhaps not enough focus is put on just how skilled he was at making clothes.

CWE: He was very fastidious about the idea of learning techniques. He really looked up to Mr. Pearl, who had this career in Paris making amazing corsets. Berwick Street market was an Aladdin’s cave, where you could get the sequin fabrics and needles and threads—he would refer to that as the Stitch Bitch Trail.

LS: He’s often remembered in terms of the Club Kids. What do you make of that?

CWE: I don’t think he actually liked the whole New York Club Kids thing. He went there, he was adored there. But the people that he really liked were the ones from Jackie 60 and Mother and Blacklips Performance Cult. He liked the drag queens who were politicized.

BW: He liked the ones who were incredibly smart. He loved intelligence.

CWE: He liked revolutionary people. Political people.

BW: The Club Kids thing was an early part of his history, but his ambitions moved way beyond that. Leigh, above everything else, was incredibly intelligent, a thing that shines through for me. He had many stages. He created this persona from nowhere. And he trod unknown ground and was still reinventing every day.

CWE: And he was constantly looking for ways to undermine his reputation for what he’d become known as.

LS: Are there any particular days with him that stand out?

BW: It was his birthday, and I really wanted to fuck him over. So I thought: “I’m going to get him a cat. It’s a wicked present to give someone.” I called all the pet shops, and there was a kitten in Camden Town. So I went to the pet shop, and it had sold! I thought: “Fuck it, I’ve failed.” And as I was walking down to St Martin’s Lane through Cecil Court, there was a homeless person with a cat, saying: “Do you want a cat?” I was so shocked I said, “No,” and walked up the street. But then I thought: “Of course you fucking do.” So, I went back and bought the cat, a fully-grown black cat. It was so extraordinary and immediately friendly and affectionate. I went home and put it in a stereo box, wrapped it up and went over to Leigh’s flat. Leigh unwrapped it, saw the box and thought that I had bought him a stereo. He was saying, “Oh that’s great.” Then he opened it, and the cat jumped out. He was completely horrified at first. But then he was a great father to the cat. Leigh adored Angus.

CWE: He named him Angus, which was the name of my boyfriend at the time. He did it to punish him.

BW: The cat was always sleeping in amongst fabric.

CWE: The flat was pretty amazing. Before Trojan died, it had Star Trek wallpaper. And after he died, Leigh decided that he wanted to change it. And as he was peeling off the wallpaper, he found one of Trojan’s hairs, from when Trojan and Leigh had put up the wallpaper. Leigh said he freaked out and didn’t know what to do. “I just ate it,” he said. He just had to ingest it.

LS: Tell me about his wedding; he married Nicola Bateman.

CWE: That was quite late on. I was his best man.

BW: The wedding was one of the secrets that I didn’t know about. Cerith was privy to that. But that was another of those “What else didn’t I know?” moments.

CWE: Leigh was in Minty [his band] at that time. He was also very scared at that point, and I imagine was probably showing symptoms of HIV/AIDS. He got married so that if the worst happened, at least Nicola would have a roof over her head. He was in a furious mood all day. He had this blond wig on and a coat that he’d bought on Brick Lane that was very nice, black, heavy, silk satin—an Orthodox Jewish man’s coat. Nicola just kept saying things like, “Oh darling, this is the happiest day of any woman’s life.” She was dressed in blue and had a blue garter—everything was her “something blue.” She’d really gone for things as if it was the Royal Wedding. Her sister was the bridesmaid and was dressed in a bizarre 1960s pop-art Paco Rabanne dress; her hair was big and bouffant and had black and white make up, mod shoes and big Perspex earrings. After the wedding, Leigh said he had to go to a Minty rehearsal: “Nicola you have the money, make sure that you spend it all on a wedding breakfast.” We went to the Angus Steak House on Leicester Square, the three of us there looking like complete freaks. We had steak and chips and a salad. After, Nicola’s sister and I went to a party at the Architectural Association, where I was teaching at the time—I actually got Leigh in to teach there too—and she won a prize for best fancy dress.

BW: How long before he died did they have the wedding?

CWE: A couple of months. It was the summer, I think, and he died in winter.

BW: On New Year’s. So very Leigh to ruin New Year’s. So sick, because every New Year’s you think of Leigh.

Film still from Baillie Walsh’s UNSTITCHED (1990). Courtesy of the artist.

LS: Tell me about getting him in to teach at the Architectural Association.

CWE: I was teaching a foundation course, which I’d got into because someone had asked me to come show my films and give a talk to some students. I’d asked to see the students’ work and ended up doing these tutorials and got on well with the students. Someone was having a baby and went on maternity leave—so all of sudden I was running the foundation department at the Architectural Association, despite having never studied architecture and actually being rather suspicious of architects. I ended up teaching there for seven years. I’d try and get them to look at things around buildings: dance, fashion, the body, do plans for zoning in department stores, or map Selfridges on top of the British museum so the Assyrian department would be in the same place as the shoe department—stuff like that. It was about opening people’s minds up, to stop them just thinking about making fabulous houses on golf courses in the Mediterranean. I thought Leigh would be perfect to come in, do it for a term and see how it went. I had a bit of a budget, so we hired ten sewing machines. He suggested we have to make a pair of gloves, as that was really, really difficult. So, we did a glove making workshop—every student had to make a pair to fit their own hand, and Leigh was there to help. The students were just over the moon—they loved him. On his first day, he had been so nervous. I remember he had on this pair of trousers that Jean Paul Gaultier had given him. They were green stretch satin, the weirdest thing. They had obviously worn out so many on the bottom that they had the overlocked stitching to hold them together, over and over and over again to keep the whole thing together. I can remember looking at him; he was covered in makeup—very, very heavy foundation.

BW: It would be orange.

CWE: And lots of rouging on the cheeks. Sometimes he’d wear one of his chemotherapy wigs, which he would have gotten from a charity shop and then cut so you could see all the netting on the scalp. But he was so tall. I thought: ‘You’re huge today, four inches taller than normal.’ I couldn’t work it out. He lifted the trousers up. And inside his trainers was a pair of trannie stilettos.

BW: He loved height. He wanted to be the biggest man in the room.

CWE: He was so nervous though.

BW: But the nervousness was endearing, wasn’t it?

CWE: Absolutely. By the end of the day he knew the names of their brothers and sisters, where they came from, all of that. He’d see them two months later and be like, “So, is Mathilda still doing the veterinary college thing?”

BW: There was always a boy he really fancied.

CWE: One time, Pearl came in, and we showed them a VHS cassette of a Christian Lacroix couture show. The students had never seen a fashion show. Pearl was there whispering away about couture and handcraft with his 16-inch waist. Leigh thought the show was genius and flawless. All the students were really getting into it. So, the project developed so that at the end of Leigh’s term we were going to do a fashion show, where the models were going to be the students and they were going to make outfits, couture outfits, based on a building. A very bright boy from Bulgaria chose a Bruce Goff strange kind of desert range house from the early 1960s. There was a very privileged Iranian woman who didn’t have a portfolio and would use a brand-new giant Chanel shopping bag to carry her work. Leigh was of course like, ‘She’s a genius; she’s incredible.’ She decided that for the fashion show, she wanted to come as the Taj Mahal. So Leigh helped her make a papier-mâché dome helmet, which she decided she was going to cover in fusilli pasta, glued on and sprayed silver. Now, the Taj Mahal has a lake down the front of it, so she got some Perspex manufacturer to make these two narrow strips which went down the front with blue colored water inside and model trees glued down the side. The fashion show was very well attended—Vivienne Westwood, Rifat Özbek, Jasper Conran, and people from Vogue came. Leigh was the compere. And for that role, he decided to sport his head coming out of a toilet bowl with brown latex filled with rice krispies all down his front—like a brown shitty head coming out of a toilet—with a see-through corset, a huge skirt and black eye makeup. He had a clipboard with notes about each student and spoke in a voice as if it was a couture show: “And the next model that we have is…” I remember in one bit he said, “Dana has come at the Taj Ma Hole, oh sorry Mahal.” People were roaring with laughter. It was off-the-charts mental what people were wearing, but the students were genuinely moved.

LS: The breadth of the things you both worked with him on is quite something: films, teaching, performances.

CWE: Well, he was a very creative person, so nothing was ever out of bounds.

BW: It’s been lovely reminiscing and remembering. The tragedy is that he’s not here, because he would be pushing boundaries like no one else I’ve ever known and making me, certainly, and probably everyone else question everything.

Video-still from Charles Atlas, Teach, 1992-98Still of video by Vilma Gold

Four things you never knew about Leigh Bowery

The club scene icon’s best friend Sue Tilley shares some little-told stories from her life with the founder of Taboo

 

Leigh Bowery 20 Images

Dressed in looks dripping in colour, with overdrawn lips and exaggerated silhouettes distorting his form beyond recognition, Leigh Bowery is the Christian boy who became an icon of club-kid history, inspiring everyone from Alexander McQueen (who once went to see his band Minty before their Soho residency was shut down for obscenity) to Gareth Pugh. More than 20 years after his death, Bowery’s long-term best friend, biographer and party companion Sue Tilley, was joined by a group of enthusiasts at the Café Royal this week for a talk as part of A Curious Invitation’s Icons of Fashion series, to tell his story from a more intimate perspectiv, from exploits in London to checking into the hospital under the name John Waters and watching his bands Minty and Raw Sewage (once named the Quality Street Rappers). Here are four things we learned about the icon. 

HIS DIY DESIGNS HAVE ENDED UP IN THE LOUIS VUITTON ARCHIVES

“His goal was to be a fashion designer,” explained Tilley. “But he wouldn’t really fit in. He wrote in his diary in 1981: ‘Fashion, where all girls have clear skin, blue eyes, blonde-blown wavy hair and a size 10 figure, and all the men have clear skin, moustaches, short waved blonde hair and masculine physical appearance, STINKS.” For the most part, Bowery decided to use his own body as a canvas for self-expression, but he did make clothes for a few friends and Boy George (who was a big fan). According to Tilley, “Boy George was terrified of him and was thrilled that Leigh Bowery was making clothes for him – he was obsessed to the point of writing musicals about him and everything!” Now many of the creations Sue received are in the hands of Louis Vuitton menswear designer Kim Jones, also a big Bowery fan. “He buys his clothes off me or I swap them for Louis Vuitton bags,” chuckled Tilley, “because to be honest, he’ll look after them a hundred times better than me, put it in the vaults at Louis Vuitton, and I’d rather that than having them in a box getting tatty.”

“Fashion, where all girls have clear skin, blue eyes, blonde-blown wavy hair and a size 10 figure… STINKS” – Leigh Bowery

HE FELT THE TIME WAS RIGHT FOR TABOO TO END  

Taboo, Bowery’s iconic club night founded in January 1985, served as a meeting point for all types of people inspired by freedom of expression and absolute disregard for the traditional. The club staged its last hurrah in 1986, after asserting itself as the pinnacle of London nightlife. Tilley explained the story behind its closure. “Someone sold a big story to the papers about it being a den of vice and drugs. I never saw drugs or people on heroin or whatever, but perhaps I wasn’t looking in the right place. So this was the story, and the club had no choice but to shut it down.” But Bowery believed the time was right. “He then realised it was actually a good thing – it’s much better when something is shut down at its pinnacle when it’s still really good than when it’s died down and there’s three people from the suburbs in there. And then they asked him if he wanted to open it again and he went, “No. It’s best that it stopped when it did.”

The original club kids: Boy George and Leigh Bowery at Taboovia pinterest.com

HIS BODY PERFORMANCE ART HAD ACCIDENTAL BEGINNINGS

Although Bowery is perhaps best known for birthing his friend and wife Nicola Bateman, who came out of the performer’s ‘vagina’ with sausages for an umbilical cord, his first venture into the performing arts didn’t quite go as planned. “His first performance was at a crypt in a church that was run by the neo-naturists, a bunch of people who just walked around half-naked, the most famous one probably being Grayson Perry,” Tilley remembered. “Everyone was standing round. He went round and stripped off naked, and in the process he caught his nipple that he’d just had pierced. It started bleeding and there was blood pouring down his chest… So he put on a doctor’s coat and pretended to inject (co-performer) Trojan with various syringes, Trojan then threw lighter fuel to the floor and set fire to it, while Leigh pissed into a glass, then Trojan drank half the piss and used the rest to douse the flames. I don’t think he’d be allowed to do that nowadays because of health and safety – but everything went then. Things got a little more professional after this, but bodily fluids still played a big part in Leigh’s repertoire.”

“Leigh pissed into a glass, then Trojan drank half the piss and used the rest to douse the flames. I don’t think he’d be allowed to do that nowadays because of health and safety” – Sue Tilley

Many unfamiliar with the 80s club kids will know Bowery as one of artist Lucian Freud’s sitters. The 1990 portrait Freud painted of him, “Leigh Bowery (seated)”, was hailed by many as a masterpiece. Tilley, who also sat for the artist, explained how the two met during one of Bowery’s performances in a room with a two-way mirror. “Leigh dressed in a different outfit everyday, and he’d walk around this space like a sort of caged animal – he was very gymnastic as well, so he did a lot of high kicks and spinning on the floor. And there were musical traffic sounds and different smells coming. People used to come to the gallery for two hours – some of them were there every day to watch him. That was proper validation, because it was ‘proper art’ and it was accepted. One member of the crowd that came to see him was an old artist called Lucian Freud – because some of our friends worked for Lucian Freud they had mentioned Leigh, and he was curious and wanted to see what he was like, since he had a lot of interest in the world. He came along and was absolutely thrilled by him – especially by his calves. He said “It’s amazing! His calves go straight into his feet!” so he decided he wanted to paint him. This was a real turning point for Leigh.”

References

  • The AIDS Memorial – Leigh Bowery

Gay Guys…We Have A Problem! Its Name Is “Attitude”!

Picture it; “Coastal Twist” Fair Day, Umina Beach, October 2019. This was one of a number of inaugural events for a yearly festival for the gay/LGBT/queer community on the Central Coast of NSW. I attended this friendly-feeling event with my housemate (an ex), and my most current ex. We have all moved out of the big city, and into the peace and quiet of life in this area almost 4 years ago. The gay community in this rather large area of NSW is there, but not blatantly obvious and “out there” like it is in the city. It is not easy to meet other gay people here, and the apps only really offer sex, not friendships. One would hope that events like this could change that scenario, but…

So, we are standing in the allocated area for alcohol, having a beer. This guy appears and greets my housemate, who knows him, and his partner, from earlier days in Darlinghurst, where they ran a restaurant. They have also dropped my housemate home from Woy Woy station on several occasions, on their way home to Umina Beach. In other words, they only live a very short distance away. My housemate has always made a point of telling me what a lovely couple they are.

Anyway…we are chatting to the one who appeared, obviously an extrovert. Really nice guy, very friendly, very chatty, and not a scatter brain. I automatically took to him, and the four of us were happily chatting away about life on the coast when his partner made an appearance. Despite my housemate insisting I knew them – he does this a lot…like I knew every single gay man in Sydney – but I certainly don’t remember them, so introductions all around. The partner stood next to me, and quite obviously wasn’t interested in getting involved in the conversation going on, which made me feel quite uncomfortable. He hung around for a couple of minutes, disappeared, returned a short time later, then disappeared again. Meanwhile, I found the one we were chatting to quite affable, and thought…nice guy to get to know. Finding out that he was also on a disability pension, and free during the day had me thinking about occasional coffees or lunches to break the home monotony. Towards the end of the chat, he mentioned they were having a barbecue the next day for some friends, and would we all like to come. Thinking this was a great opportunity to get to know and socialise with some other local gays, we said yes, and in return invited them to our annual home Christmas bash at the start of December. It did cross my mind that with the partner being less friendly and sociable, there could be a problem!

As it turned out…I was right. Got up the next day quite looking forward to meeting up again, only to be told by the housemate that he had received a message from the affable partner, saying the unfriendly partner was not feeling well, and the barbecue had been cancelled. We both exchanged a look that said…we know what’s happened there. Not a word since. It has been made pretty obvious – at least from one of the two – that we are supposed to ignore each other, despite a shared sexuality, and close proximity. Needless to say, I was very disappointed! It’s almost like being back on the scene in the city, where attitude reigns supreme!

I have heard from a number of Melbourne gay guys that Sydney gays are hard to get friendly with because of their attitude…and having lived in Melbourne, I tend to agree. What is it about Sydney men that makes them think they are better than anyone else! It was difficult enough when negotiating the scene in the 80s & 90s. There is a stand-offishness with Sydney guys, an attitude that makes approaching them difficult, and awkward. I always found picking guys up in Melbourne a lot easier than picking them up,in Sydney. It’s not that I lacked a sex life in Sydney, more that you had to work harder for it, and if guys weren’t interested, they were often quite rude about it. Everyone hung around in their cliquey groups – including me – and because the group was always there, in the pubs and bars, it was difficult to meet an individual. Going to a pub or bar on your own often meant that was how you remained for the night – single and alone. It was likewise within the scenes sub-groups, such as leather guys, bears, muscle Mary’s and so on. It seemed to be a like-for-like situation, and if you didn’t fit you were left on the outer. Despite sly looks, and eye meetings, attitude more often than not got in the way. Big parties like Mardi Gras and Sleaze became, after the late 80s, just about the gym bunnies dancing…off their faces…with other gym bunnies, and if you didn’t fit the mould then…too bad. I did wonder on occasion if these Peter Pans had any sex life at all, or did they just pose and flex as a substitute! It got really bad. Attitude ruled!

I remember only too well my run-in with AIDS in 1996. It was a very distressing and traumatic experience, and one I wasn’t expected to survive. However, it was a time of big advances in HIV medications, and I got through it against the odds. After 18 months of getting my mental and physical health back together, I thought it was time to make a move back onto the scene, and start having sex again. It had been a long drought. And in that interim period, even more friends had died, and it became very obvious that I knew very few people in Sydney at that time. I think my first night back out in a pub I had always been familiar with was…scary and alienating! I knew…nobody! And found myself standing on my own all night while these groups of people socialised around me. As always, guys looked, but no one approached. I recollect feeling very distressed about it. Not being someone who did beats, saunas or backrooms, I wondered if I was ever going to have sex again. It made me very aware of the devastation that wiped out most of my social circle, and despite me hoping that HIV/AIDS would bring us,…as individuals who existed within a sub-cultural community…closer together, that instead attitude had won out, and if you were on your own within the ghetto, you were likely to remain so. It gave me empathy for those who, in the days prior to my brush with death, I had observed wandering through the scene largely ignored.

I did eventually have sex, though it came with the knowledge…at least on one occasion…that people on the scene who were on the outskirts of HIV had no concept of what I was recovering from. I wanted a slow transition back into anal sex, but the attitude was…well…why! You’re gay…you should be ready and willing to do this HIS way! That didn’t work for me…though my second encounter was a lot more reciprocal and inventive. I fortunately ran into a friend when out one Friday night, who I hadn’t had contact details ,for, and thanks to him I then had someone to go out with. Shortly after that, I ended up in a relationship for the next 16 years. Through him, I ended up circulating in his social circle, so until we moved to Brisbane, our social life was quite good. Yeah…Brisbane…

I admit to being a bit of an introvert, but not to the point where I don’t socialise or enjoy the company of other people. My partner was my opposite – he was a true extrovert, and as often happens, the opposites that we were worked. However, Brisbane defeated both of us. What is it about capital cities that make gay men develop attitude – that ability to look down their noses at other gay men, to be stand-offish, or just talk through you. There was a lot of that in Brisbane, and in the almost 4 years we lived there, we had no friends on the local scene. It was like an unbreachable barrier. In early 2014, we mutually called an end to our relationship. The next lesson in gay attitude was about to come to a head. This branch of attitude was called…social media!

I love how we give names to things that aren’t what the name implies. I first started using Facebook around 2012. There wasn’t a lot of use back then, but I then discovered that a lot of people I knew from the scene in the 80s & 90s…and assumed many were dead as they had disappeared from the scene…were actually on FB, and much to my delight I reconnected with them. Now, this is the “social” part of social media that I enjoyed then, and continue enjoying even now! I have to say that of my 150-odd “friends” on there, in reality my friend list could be reduced to about 40, as they are the only ones who respond to, and comment on, posts and status updates. As for the rest of them…I don’t know why they bothered sending a friend request in the first place! In many (most?) cases, it is a matter of commenting on friends posts, and somebody from their list checking out your profile (picture, mainly), and thinking they’d send you a request.

I used to look at the friends requests, see how many mutual friends we had, and either accepted or declined from there. However, even that method of “friends in common” hasn’t proved successful, and I’ve ended up with a friends list of mainly people who may as well not exist at all, as they neither like, nor comment on, any of the activity coming from my profile…except for the serial pests! Yep…those guys who send friends requests for no other reason than to try to hook up through FB Messenger. They seem to think because you are friends with so-and-so, you are automatically available for some dirty talk or otherwise. As soon as I accept a friends request, and seconds later a Messenger pings with a “Hi handsome” or “Hi sexy” message I think…here we go! I know it appears rude, but these days I ignore them. Back in earlier days, when it really annoyed me that they didn’t want to know anything more about me than the size of my cock, I used to bore them with long tirades about myself to see if they’d stick it out! They rarely did! In my defence, I’m not adverse to some dirty talk (as several can attest)…but I like a stranger to get to know at least a little bit about me first!

Which brings us to the modern curse of self-censorship. These days, everyone seems to be so easily offended…though I do wonder if a lot of it isn’t being offended for the sake of being offended. As I’ve stated, I know most of my friends list, but there are those in there I don’t!’t know (friends of friends) so I always have to think before reposting something…is this going to offend anyone, even if it’s a tongue-in-cheek meme.

Instagram has become, in many respects, a narcissist heaven. Every person…gay and straight…who goes to a gym has to put up daily photos with shirts off, and undies on…just! Men love to show off their cocks/cock bulges and it has become so prolific that it borders on being a yawnfest now, and it’s noticeable that none of them are unattractive. Conversations of any description are light on too…though I do check regularly to see what reactions the posts generate. ❤️😍🔥🍆💦 are all most admirers have to say!

Of course, the next step from social media were the sex apps! Fuck me…can we talk a whole new dimension to hollow, and shallow! Now we can REALLY talk attitude…and how! My experiences in my short 12-month sprint on these apps could fill a book! And virtually none of it positive! The only way I have ever been able to describe my experiences there are as…demeaning, humiliating and frustrating! It seems to be the one medium where users can be totally rude, ignorant pigs…and get away with it!

At the height of my sex app/web usage, I was logging onto Gaydar, Scruff, Grindr, Manhunt, and BBRT. It’s like a drug addiction! You’d find yourself logging on over breakfast just to see what humiliation was in store for you that day. Of all the dozens of men I had contact with over 12 months, my total scoring sex encounters amounted to…5. Of those…1 was satisfactory. Thankfully, there were no second dates. So, here are some of my (true) encounters on the apps. Take into account that I discovered early not to give your true age…but I only knocked 5 years off…I was upfront about being HIV+, (and had an undetectable viral load for many, many years), and that I was severely vision-impaired, and as a result of this, I didn’t have a car. No names mentioned to protect the guilty;

  • The guy who had hot tatts, and messaged me, whenever I was online on Saturday night, that he would drop in TONIGHT. He never made one appearance…but I would say that due to the long gaps in answering messages, others were perhaps more lucky!
  • The guy who wanted to call in at 8.00am on his way to work for a quickie, then got his nose out of joint when I said no, as I had to get up at 7.00am to walk the dogs, and that was my have- breakfast-and-wake-up-properly time…and I just wasn’t horny at that hour! No mention of alternative times from him, so bye!
  • The guy whose photo was always right next to mine on Scruff, and lived in the same suburb. After 6 months of this happening, I thought I’d just send him a message to say hi from another local…was intended to be quite innocent! I got the most abrupt message back, wanting to know what I was after! He did calm down when I explained it was intended to be nothing more than a hello from a neighbour, but it made me realise how judgemental people on these sites were.
  • The guy who kept sending me teasing messages, then messaged me one Saturday night saying that he and 4 other guys were having a party, were off their faces…and needed tops!
  • The much older guy who thought he was so desirable that he had a “stable” of guys. He visited me at home…non-sexually…and explained that he would pick and choose his sexual partner depending on his mood. Evidently, if you were lucky enough to be selected for an encounter, you were expected to drop everything and be available to satisfy his sexual requirements. Needless to say, the three times he rang me, to an unanswered phone, must have eventually given him the idea that…we’ll…I wasn’t available!
  • The guy who was in a relationship, but his partner was working, and he travelled for about an hour to get to my place, arrived at around 3.00am, then proceeded to sit and drink a bottle of wine (even I’d stopped drinking way before that hour), then at 4.00am when we hit the sack, wondered why I couldn’t keep a hard-on…could it have been that I had been drinking much earlier, and that I was REALLY tired?
  • The guy who had been messaging me for months to have an assignation. He had a profile picture of an attractive, well-groomed guy, and had there that he was into fitness. My profile stated that amongst my PREFERENCES were smooth guys, into fitness and health, as I was. Well…when he turned up, it was evident the profile picture was quite old. Wasn’t totally unattractive, but had unkempt hair and beard, was overweight…and very hairy. We did have sex, as he was actually quite a nice guy, and we lined up another date. As it turned out, I had to move back to Sydney before that came around, and messaged him to let him know. He messaged back asking who I was…that he couldn’t place me. Obviously just as well I wasn this hanging out for the second date!
  • Then there was my one quite satisfying encounter. Nice looking guy, great personality. Came over for dinner, and seduction, all achieved quite enjoyably. By this stage in my personal life, I had just split up with a partner I had been with for 16 years. We hadn’t had sex together for a number of years at this time…he had assignations behind my back (or so he thought), and I was monogamous inside a relationship…so I hadn’t had a good fucking for quite some time. Not surprisingly, my guest wasn’t a small boy, and there was some…not unexpected…discomfort after. However, the next day…it never rains but it pours…another guy messaged me could he come over. This guy was also in a relationship, but had fantasies about fucking guys raw (no condoms, that is). Not believing my luck, I agreed. He turned up for what was basically a “blow ‘n go”, but having some slight damage from the night before, there was a bit of blood when he drew out. Well…he freaked. I kept trying to reassure him that I was undetectable, had been for a long, long time, and that I couldn’t pass anything on…not even a good old-fashioned std! Anyway, after much showering and scouring, he left. I think he was having second thoughts about his sexual fantasies at this stage.
  • Then the strangest one of all! Met two guys on the Barebackers site. One was interested sexually…so I thought…and one was in a rather odd relationship, but just wanted friendship. They both knew each other quite well from the site, and both came over for a “check you out” visit. We hit it off really well, and I was quite attracted to the guy who I thought was sexually interested in me. Later that night, he dropped the other guy home and came back. We had a couple of glasses of wine, and a chat. There was a bit of touchy-feely, then he said he had to get home, so I said okay. The visits continued, and what appeared to be a friendship developed. Now, the guy informed me he used to be a gay male escort in Sydney back in the 80s. We had both already ascertained that we’d lied about our ages on the site, and as it turned out, there was only five years between us. So I got a real surprise one night when I progressed things from just tit play and tongue kissing…to oral. That was fine, but then I pulled him up off the lounge, and headed him to the bedroom. He freaked…and fled! I really couldn’t work out what was going on at all. The next time we chatted, it was like nothing had happened. A chat with our other mate revealed that he had invited his 80-odd-years-old parents to live with him…and that they (who were living in the flat of their 55-year-old son) and they actually dictated what time he should be home by! Anyway, for some unknown reason he got very stand-offish, and we lost contact just before I moved back to Sydney. At my first dinner party with friends back in Sydney, I must have accidentally pocket-dialled him. I received a rather abrupt message from him, informing me that he really didn’t appreciate me ringing him to show what a good time I was having back in Sydney! WTF!

Unlike other guys I know, by admitting my HIV+ status on these sites, I never had anyone ask me if I was “Clean”! What ignorant arseholes these people are! What gives them the right to embarrass and demean people in this way…it is just internalised homophobia/AIDSphobia. Many of the recipients of this “request” were guys who lived through the horror years of HIV/AIDS, fought the battles for access to medical care, sat back…defenceless…as their social circles – friends, acquaintances, relatives, partners – were obliterated from the face of the earth, fought their own battles with AIDS and associated illnesses, coming out the other end of it burnt out, emotionally and psychologically devastated…YET embracing new treatments and therapies, many of which had not been thoroughly trialled. They are here because they took control, found treatments that worked, thus increasing their CD4 counts, and are now living with undetectable viral loads. It is now proven beyond any shadow of a doubt that having unprotected sex with an HIV+ person with an undetectable viral load will NOT put you at risk to contract HIV! Yet there are low-lives on sex apps who have the rudeness and audacity to ask these guys if they are “Clean”? Seriously? Fuck off! And get a fucking education, you ignorant prick! I can assure you…it’s just as well you never confronted me with that!

Before I moved back to Sydney, I deleted the apps, and closed online accounts. I really had had enough. I just don’t get why guys are so dishonest, and make having sex such a difficult thing! It’s like everything that goes on through social media, and sex sites. People can hide behind profiles, and they seem to think that because there is no person-to-person contact, they have a licence to throw all decency, morals and ethics out the window…that it is just open slather to be rude, demean people, lead people on, and to hurt people with no consequences coming back on them! It is one of several big drawbacks of using these forms of media. This sort of irresponsible behaviour would never have been tolerated in the days of face- to-face meetings in bars. It is sad that gay men have cheapened themselves so much in these days of contemporary media!

I am reconciled to a sexless life these days…well, apart from what I can do myself! The gay scene in Sydney is pretty well dead. Ageism was always alive and well anyway, and that is something that has moved over into social media, and the sex/dating apps. There are no gay bars in the area I live in, and despite the odd occasional eye contact in my local clubs, there is little opportunity to meet other gay people. Most of my social life these days revolves around straight people in my own age group. It’s not that this concerns me, as they are wonderful, inclusive people…but not likely to provide a 66-year-old who still has a high libido a sex life! That some of the gay people we’ve met here have an attitude problem, doesn’t help.

A lot of gay men need to get over it! That somebody wants to chat to you doesn’t mean they want to pick you up! More often than not, they just want to interact with someone who shares their sexuality, to be able to talk”gay”. These are, in many respects, remote areas that don’t have rows of gay nightclubs and pubs, and we need to learn respect for each other, irrespective of age, disability or gender. We can be our worst enemy, and it’s time to move on from attitude and snobbery.

Next time you pass someone in your local village or town who you think might be gay…we are more often than not still obvious…throw them a smile and a “Hi”. It’s not going to cause you any harm (even if they are not gay), and it could well make that persons day.

Tim Alderman ©️ 2 019

 

 

Getting On With It! A 37 Year Retrospective of Life with HIV/AIDS (UPDATED)

The challenge of writing about 37 years of living with HIV/AIDS isn’t so much to write tomes about what actually was witnessed over that period. That is easy to do, and I could ramble on forever about it. The challenge lies in being objective and succinct, to tone down the schmaltz and sentimentality and cut to the chase. Not as easy as one may think, as these were the most challenging, relentlessly ruthless and heartbreaking years of my life. But if survival is the gauge of ones strength and tenacity, then I have come out at this end of it with flying colours. Indeed, the cup is half full!

The author at 65

So what was it really like in 1982 to be reading snippets in our local gay press about this mysterious illness in The States that seemed to be targeting gay men who frequented the saunas, and quickly killing them? Well, cynicism and disbelief to start with, and the surety that within a short period of time they would find an antibiotic to clear up yet another STD. Soon the snippets were to become columns, then pages as the mysterious and deadly illness leapt from the shores of America and found its way here.

Our response was mixed. The first recorded case of HIV at home was 1982, and the first death in 1983. We had our usual ratbags who yelled and screamed about God’s vengeance on the evil, sick and perverted gay lifestyle (obviously a different God to the compassionate, all-forgiving one that I had heard about), the advocates of hate who demanded quarantine for all infected persons, and those who either quietly or vocally wished that we would all die or just go away. Not that easy folks!

Thankfully, common sense prevailed and both the government and the grassroots gay community combined to put both AIDS Councils and NGO programs in place. Our quick response was instrumental in Australia always being at the forefront of HIV/AIDS care. Within 2 years every state had an AIDS Council under the national umbrella of NAPWA (National Association of People with AIDS), and the formation of support organisations such as The Bobby Goldsmith Foundation (named after the first person to die from AIDS in Australia), Community Support Network (CSN) and Ankali. Without these organisations life would have been grim for those infected. In 1985 testing was introduced. It was a bit of a strange affair in the early days. Due to hysteria and discrimination no one wanted their personal details on a database, so you chose a name, and Albion Street Centre issued you with a number that then became your ID. You had a blood test, and waited for two weeks – talk about high anxiety – to get your result. I had a mystery illness in 1982, a flu-type illness that wasn’t the flu, and already suspected that I had sero-converted and was going to come up HIV+. I was right. Counseling? Oh yeah, we had a lot of that back then. “You’ve got about 2 years to live”. Shrug shoulders “Okay”. And off we went knowing the inevitable was rapidly approaching, and it was time to PARTY!!! What else could you do?

However there were horror stories. The disgusting treatment of young Eve Van Grafhorst is something for all Australians to be ashamed of. Born in 1982, she was infected with HIV via a blood transfusion. When she attempted to enrol in her Kincumber pre-school in 1985, parents threatened to withdraw their children due to the (supposed) risk of infection. The family was literally hunted out of town, and forced to leave the country and go to NZ. I will never forget the sight of this poor, frail girl on her way to the airport. I, like many others, was horrified that this could happen in Australia. Thankfully, her NZ experience was quite the opposite, and she lived a relatively normal life until her death in 1993 at 11 years of age. Her parents received a letter from Lady Di praising her courage.

Eve van Grafhorst was diagnosed with HIV and hounded out of Australia, but her legacy endures

Meanwhile, the Australian nightmare was well and truly hitting home. My first close friend, Andrew Todd, died in 1986. At that time there was no dedicated AIDS ward, and Andrew was shifted between wards as beds were needed for other cases. He died on Boxing Day in A&E (called St Christopher’s ward, due to people usually just “travelling” through it on their way to a dedicated ward) at St, Vincent’s Hospital In Darlinghurst. It is interesting to note here that the Sisters of Charity, who founded this hospital, put the hospital at the centre of HIV care very early in the epidemic, and also provided palliative dare through the attached a Sacred Heart Hospice. I had the sad duty of ringing all my friends at a party to tell them the sad news. Party pooper recognition acknowledged! Ward 17 at St Vincent’s eventually became the dedicated AIDS ward, and for the next 10 years was never empty. Other hospitals such as Westmead hit the headlines for all the wrong reasons; full contamination clothing for those working with HIV people, rooms not being cleaned, meals left outside doors. Even the poor old mosquito copped a hiding as a means of contamination, along with toothbrushes, glasses, cutlery and crockery. An advertising campaign featuring the Grim Reaper bowling down poor people created an apocalyptic vision of HIV that scared the life out of everyone. It was quickly withdrawn. In the interim, my 2 years became 4, which became 6 followed by 8. My life became a haze of alcohol and cigarettes, not shared alone.

In the 80’s I held a lot of parties with anywhere from 40- 60 friends attending. By 1996, if I had tried to hold a party I would have been lucky to have dug up 10 friends to attend. In the blink of an eye my social circle was effectively wiped off the face of the earth. Hospitals, hospices, funerals and wakes became the dreaded regular events. It was death on a relentless and unforgiving scale. The Quilt Project became the focus of our sorrow, and it’s regular unfoldings and name readings were tear-filled times of remembrance and reminiscence, along with the yearly Candlelight Rally. I attended until I became so empty that I could no longer bear it. I submitted my names but no longer attended. In the early 90’s four friends died close together – two from AIDS, one a heart attack and one cancer. This was a particularly heavy blow as two of these friends had been regular “gutter drag” partners, and that part of my life effectively ended. In a perverse way, it seemed strange that the Big A wasn’t the only thing stalking our lives.

Ready to do a quilt unfolding at the Government Pavilion, Sydney Showgrounds, around 1991. From left Peter McCarthy, Peter Gilmore, Bevan Lambert, Steve Thompson, Tim Alderman.

Despite its reputation for being human Ratsac (the Concorde Study in France named it such, after conducting an unethical trial; turns out they were correct!) I started taking AZT when my CD4 count started to take a dive. Hard work, long hours, heavy drinking, chain smoking, a shit diet and emotional turmoil didn’t help. Pub culture became lifestyle. Did several drug trials – D4T, which was sort of successful, though the same class of drug as AZT. Also p24 VLP (Very Light Protein) which proposed that stimulating the p24 antigen may help control HIV. Total waste of my time. It did nothing. We started alternating drugs – 6 months on AZT, 6 on D4T, 6 on DDI, 6 on DDC. Perversely it seemed to keep the wolf from the door. Dosage was huge. Everyone on it ended up with kidney problems and peripheral neuropathy. Prophylactics added to the drug burden. In the meantime there was no HIV dental service and our teeth rotted or fell out due to bouts of candida. I left work in 1993 after being seriously knocked around by viral pneumonia which should have killed me…but didn’t.

Like many, I went on every drug or alternative trial that came my way. There are those who have described us guinea pigs as brave, or “heroes”, but we certainly didn’t feel like that at the time, despite it being a very selfless act. The thinking at such a desperate time was that…well, if it works for me, the benefit will flow onto everyone else! But there were, in the early days at least, more failures than successes. D4T:FAILURE…caused anaemia; P24-VLP:FAILURE…was hoped it would boost the p24 antigen – it did nothing: Goat Serum:FAILURE…though I did get a very scary skin rash from it; Vitrasert Implants: FAILURE…though due more to HAART eradicating the scourge of CMV retinitis. Were intended to leach Ganciclovir into the eye over a 9 month period, thus eliminating the need to have it injected into the eye regularly. Two minor operations to insert them, with an initial estimate of a 4% chance of developing cataracts. Turned out to be a 100% chance, thus further operations to remove the cataracts. Fun, baby!

I was shuffled onto the pension, and given rent subsidised housing by DOH (Department of Housing). The subsidy seemed like a good idea at the time. After all, weren’t we all eventually going to be killed by the Big H, so no one would be on it for that long? Famous last words! My alcohol consumption and chain smoking increased, if that was possible! Was losing weight at an alarming rate, and naturally no one noticed because I took to wearing baggy clothes to disguise it. Nothing quite like being delusional. Moved from Darlinghurst to Bondi. Nothing like moving away from the scene to help your health…not! Collapsed in the street, and admitted to St Vincent’s not with PCP as suspected but a collapsed lung. Two weeks later and a change of female GP’s saw me back in the doctor’s rooms while she read my hospital discharge report. Had they tested me for CMV retinitis? No! Was I having trouble with my vision? Yes, but I do wear glasses. Guess what? We’re sending you for a little holiday at Prince Henry Hospital (now closed). I was a little bit sick. Chronic CMV retinitis, chronic candida, chronic anemia, had 10 CD4 cells and weighed 48 kgs. Mmm, prognosis was not good. Well, it had been a good life. I was certainly joining a band of party people. But no! Life hadn’t finished with me yet. Protease Inhibitors had come along at an auspicious time, and within a fortnight I had been stolen from the arms of death. Mind you, that fortnight had been no picnic. Ganciclovir injections into the eye, Deca-Durabolin injections to help put weight back on, blood transfusions, and enough finger prick blood readings to last me the rest of my life. And the problems had just started for this return-to-lifer. Not dying when you are supposed to really fucks up your head space.

So started the next round of therapies. Peer Support groups; counselors; Caleo (Greek word which means “To Stick”, a treatment management group who help you maintain the impetus to take the billion pills a day (I was taking over 360 pills a week – anti-retrovirals, prophylactics, and pills to control side effects – at one stage) we were taking); clinics; dental care (now up and running); volunteer work (to keep one sane). What started out as volunteer work at the then PLWHA (NSW) Inc (now Positive Life) turned into paid employment as a research assistant. I started writing for “Talkabout” magazine, joined the Positive Speakers Bureau, and learnt to use a computer. A couple of stints back in full-time employment made me realise that big changes needed to be made with my life. By this time my health was pretty well back together. A couple of nights out pushed home just how few people I knew, however did lead to meeting my current (now ex) partner. A brief encounter with Indinivir sludge in my kidneys (which involved having a stent inserted then removed) also made me aware that for HIV+ people the unexpected can happen at any time. Yet another change of doctor. Self-empowerment had become an important issue, and I wanted a say in my health management, as distinct from being dictated to. Big changes were about to happen.

In 2000 David and I did a big (and expensive) holiday to the Red Centre. It was an amazing experience. Before leaving Sydney I had applied to the University of Technology in Sydney to do my degree in writing. Shortly after arriving back home I was informed that I had been accepted. Ah, the advantages of mature age AND disability. So spent three years doing my Graduate Certificate in Writing, was office- bearer for the Special Needs Collective…in fact I WAS the Special Needs Collective, and discovered I hated having to deal with the moronic “radicals” who called themselves the Student Association and did nothing except rant and rave, and waste student money. I was glad to leave uni. Towards the end of 2004 I decided to get my chef’s credentials from East Sydney TAFE, and crammed a 12-month course into 6 months. As much as I hated uni, I really loved TAFE and found it more grassroots and honest. David and I started Alderman Catering, a top-end catering business though it only lasted about 2 years as I found it very exhausting. I then sort of returned to my retail roots by opening a web site called Alderman Providore to sell Australian made gourmet grocery items. The site proved successful, and within 4 years I was opening my second site, this time specialising in tea, coffee and chocolate products. I got involved in a trial using Goat’s Serum to treat HIV, but again another waste of time. I did manage to get a skin rash from it, and managed to score a $1,000 for participating. In late 2009 the GFC hit, and online shopping took a major hit. After a disastrous Christmas that left me severely out if pocket, I decided to sell the business and put it behind me.

More eye problems followed, this time involving my blind eye. Back to the regular rounds at the Sydney Eye Hospital, and an injection of Avastin (a cancer drug that reduces blood flow) into the blind eye to stop it creating new blood supplies to an eye that couldn’t see. By this time, the interior of the bad eye was collapsing, and it took on an unnatural colour. Before this I hadn’t looked blind. Now I did! Scary how anyone you talk to can pick an anomaly – and stare at it while talking.

The next step, which sort of brings us up to date (this was 2011), was a major move. Plans to move north had been on the agenda for 10 years – in 2011 it finally happened, though we did jump the border which wasn’t in the original plan. No sooner were we there than my retina detached (I had been warned to eventually expect this, due to the amount of CMV scar tissue in the eye) in my one seeing eye…or rather was pushed off by all the scar tissue present from my original CMV infection. An emergency operation to scrape down the scar tissue, and replace the retina and fluid (called a vitrectomy) has seen my sight degenerate even further and I am now the proud owner of a white cane curtesy of Guide Dogs Queensland. It has become obvious that our two Jack Russell’s are not, despite their best of intentions, good seeing-eye dogs. I can see, though very poorly. A lot of life is a blur these days.

However, I am not going to complain. I have always enjoyed a challenge, and this presents yet another one. I gave up smoking 23 years ago, and drink only lightly and socially these days. I adopted a healthy diet and exercise program 10 years ago when I started getting unattractively over-weight and inactive.I have turned my life around by adopting this course of action. In 2013 I attended Southbank Institute of Technology in Brisbane and obtained my Certificate III in Fitness. I hoped this would lead on to becoming a Personal Trainer for mature-age and disabled people both individually and in conjunction with my local gyms. I was almost 60 by the time I finished. Just in time for the next stage of my life.

In 2014 David and I called an end to our 16 year relationship. It had run its course, and with a 14-year age gap…I’m the older…we were both at different stages of our lives. It was amicable, and we are still friends. However, it was the start of a year from hell. A disastrous 60th birthday followed, them an attack of shingles that was the worst Royal Brisbane Hospital’s Infectious Diseases Unit had ever seen, leading to an infection in the blisters that landed me in hospital with blood poisoning, followed by two weeks with a portable drip through their Hospital In The Home initiative (Neuralgia and numbness from this are still a problem 5 years down the line). Then our first rescue dog, Ampy, died. I was also faced with some serious decisions. With the parting of our ways, I could no longer afford to live in the house we were in being on a pension, and of the options open to me, returning to Sydney to move in with an ex from the 80s was the only viable one. I also made a nerve-wracking decision to have my blind eye removed, and replaced with a prosthetic. After years of ongoing problems with it, was time it came to an end, and the operation occurred in early 2015 just prior to my other dog, Benji, and myself returning to Sydney.

I stayed in Sydney only for as long as I needed to be there. I hated it! A cold, over-populated, rude city. Within 12-months, we…I include my housemate, who also came with me…moved to the Central Coast, where life is quiet, and more civilised. Life goes on…I’ve lived long enough now to start seeing the truth finally being told about many aspects of HIV – the high toxicity and ongoing problems caused by AZT, exploitation by Big Pharma, misuse of funding, unresearched and often inaccurate advice on therapies and treatments, the rushing through of many treatments that proved detrimental to those who took them. It’s time to clear the air, and take the sentimentality out of an often rose-coloured glasses view of the epidemic.

37 years eh! OMG where have those years gone? Despite all the discrimination, stress, anxiety, illness, deaths, survivor guilt and despair, there have been moments of great introspection, illumination, strength and enlightenment. That over-used word “empowerment” springs to mind and that is perhaps the one word that sums all those years up. Victim? No way! Survivor? Not in my words! And I have never been one to wallow in self pity. You just need to grab life by the balls, and get on with it. I trust that is what I have done.

Tim Alderman 2019

Gay History: June 5, 1981. Pneumocystis Pneumonia. Los Angeles.

In the period October 1980-May 1981, 5 young men, all active homosexuals, were treated for biopsy-confirmed Pneumocystis carinii pneumonia at 3 different hospitals in Los Angeles, California. Two of the patients died. All 5 patients had laboratory-confirmed previous or current cytomegalovirus (CMV) infection and candidal mucosal infection. Case reports of these patients follow.

In honor of National Gay Men’s HIV/AIDS Awareness Day, I’m republishing my article on the first report documenting the emergence of the HIV/AIDS pandemic. That article, published in the CDC’s Morbidity and Mortality Weekly Report on June 5, 1981, describes five cases of an unusual form of pneumonia in atypical patients, all young men. The broader social and public health implications of these five cases were not understood at the time of the article’s publication, but would be in just a few unnerving months. In short time, it would become clear that this pneumonia, caused by a tiny fungal organism, was part of a constellation of diseases associated with a novel and highly unusual viral infection that was spreading rapidly through a subset of the American population.

This MMWR article is the first record of an emerging outbreak that, in just one decade, would be the second leading cause of death in young American men 25 to 44 years and have infected over 8 to 11 million people worldwide. As I note in my article, “the June 5th report is a symbol of a time before HIV/AIDS became ubiquitous, before it became a pandemic, before a small globular virus became mankind’s biggest global public health crisis … June 5th marks the beginning of a radical transformation in how disease surveillance and medicine was conducted.” The HIV/AIDs outbreak, since this report’s publication and the growing awareness of the virus, has profoundly changed medicine, public health, virology, and the lives of millions of people.

It often seems that gay men are disproportionately, and perhaps unfairly, bludgeoned with HIV educational and awareness campaigns. After all, this virus is an equal opportunist infector infecting both genders of all sexual orientations. And, yes, men that report having sex with other men represent a truly tiny proportion of the United States population, a slim 2% of the three-hundred million that live in this country.

However, as the CDC reports, gay men account for 63% of all newly diagnosed HIV infections in the United States and make up 52% of the current population of people living with a HIV diagnosis. Stopping the continued transmission of HIV/AIDS in this country critically relies on affecting change and promoting awareness among these men. In 1981, we just became aware of the HIV/AIDS virus. Today, we continue to bring awareness to prevention, testing, and treatment of a virus that continues to percolate through the same vulnerable population that was brutally affected nearly thirty years ago.

June 5, 1981. Pneumocystis Pneumonia. Los Angeles.

“Pneumocystis Pneumonia — Los Angeles,” in the June 5, 1981 edition of the CDC’s Morbidity and Mortality Weekly Report, was an economical seven paragraph clinical report cataloging five observed cases, accompanied by an explanatory editorial note on the rarity of this fungal disease. It seemed to be nothing out of the ordinary from MMWR, a publication that has been issuing the latest epidemiology news and data from around the world for 60 years. The report was included in that week’s slim 16 page report detailing dengue in American travelers visiting the Caribbean, surveillance results from a childhood lead poisoning program and what measles had been up to for the past five months.

Since 1978, Dr. Joel Weisman, a Los Angeles general practitioner, had been treating dozens of gay men in the city presenting with a motley collection of uncommon illnesses – blood cancers, rare fungal infections, persistent fevers and alarmingly low white blood cell counts – typically seen in the elderly and immunocompromised (1). In 1980, he was struck by two profoundly ill men and by the similarity of their symptoms, their prolonged fevers, dramatic weight loss, unexplained rashes and swollen lymph nodes. He referred them to Martin Gottlieb, an immunologist at UCLA who just so happened to be treating a gay patient with identical symptoms.

All three men were infected with Pneumocystis pneumonia, caused by the typically benign fungus Pneumocystis jirovecii, and soon Gottlieb would hear of a two more patients with the fungal infection from colleagues (2). The MMWR editorial note accompanying the report of these cases would mention that Pneumocystis pneumonia, or PCP, is “almost exclusively limited to severely immunosuppressed patients” and that it was “unusual” to find cases in healthy individuals without any preexisting immune system deficiencies. The disease would later be cataloged on immunological graphs illustrating the awful decline of the infected – first the CD4+ T-cell count falls as the viral load ascends, then a marching band of viral, fungal, protozoan and bacterial infections capitalizing on the loss of CD4+ T-cells. PCP is now known as a classic opportunistic infection of those infected with HIV/AIDS.

In the first sentence, the report would note that the young men were “all active homosexuals.” These five were all “previously healthy” men in their late 20s and 30s. They did not know each other, they did not share common contacts and they did not know of any sexual partners suffering with similar symptoms.

Three of the men were found to have “profoundly depressed” numbers of CD4+ T-cells. All five reported using inhalant drugs, or “poppers,” common in that era among gay men, which would later serve as a lead into this new syndromic disease (3). Cytomegalovirus, found in the five men, was also suspected as a culprit behind this strange outbreak. The editorial note stated definitively that “the fact that these patients were all homosexuals suggests an association between some aspect of a homosexual lifestyle or disease acquired through sexual contact and Pneumocystis pneumonia in this population.”

By the time the very first report on this acquired immunodeficiency syndrome, which we now know as AIDS, had been published by Gottlieb and Weisman and three fellow physicians in the MMWR, two of the patients had already died.

New reports showed up after the June 5th report, the list of cancerous malignancies and bizarre diseases killing young gay men blossoming in number, seemingly inexhaustible in scope and variety. The first reported cluster was in Los Angeles but by the summer and fall of 1981, reports would trickle in from San Francisco and New York City, and then Miami, Houston, Boston and Washington, D.C. would represent new epicenters.

The July 4th report on 26 cases of Kaposi’s sarcoma, a rare cancer that only appeared in elderly men of Mediterranean descent, in California and New York City was another pivotal report on this new syndromic disease. The entire December 1981 issue of The Lancet was dedicated to the disease and hypothesized on the origins of this immunological deficiency but, tellingly, none of the articles proposed an emerging infectious disease as the culprit. The disparate constellation of diseases seemed to be linked only by their aberrational appearance in men in what should have been their prime, their gay lifestyle, and abnormally low CD4 cell counts. It had no apparent origin, and physicians were scrambling to find an appropriate treatment to decelerate the rapid progression to death.

By December 1981, it became clear that this disorder wasn’t limited to gay men but also affected intravenous drug users, recipients of transfused blood products and immigrant Haitians. The escalating numbers of cases reported daily and the disastrous mortality rate – 40% of patients were dying within a year of diagnosis – began to sow panic in the public health and medical world that soon spilled into the public (4).

It would take three years before the virus was detected and AIDS was definitively linked to an infection caused by a novel virus, human immunodeficiency virus or HIV. In just a decade, AIDS would be the second leading cause of death in young men 25 to 44 years in the United States and would have infected over 8 to 11 million people worldwide (5). The most recent estimate for the number of people worldwide living with HIV/AIDS is 34 million in 2011, with 68% residing in sub-Saharan Africa (6). That year, there were 2.5 million new HIV infections and 1.7 million AIDS-related deaths.

Though the June 5th, 1981 report was overlooked at first, for many years it would be “one of the most heavily quoted articles in the medical literature” (2). And since its publication, we have seen a cataclysmic shift in how the interrelated worlds of public health and medicine view infectious diseases, especially how to prevent, control and educate the public about them.

June 5th marks the beginning of a radical transformation in how disease surveillance and medicine was conducted. In the seventies, the scientific consensus on infectious diseases was that they were largely eradicated, that they were finished. Vaccines had diminished their presence in modern society, and antibiotics and antivirals would sort out the rest. HIV/AIDS changed that mentality and reality. It seemed to come from nowhere, the blossoming epidemic completely unforeseen and unprecedented in its scope. The June 5th report is a symbol of a time before HIV/AIDS became ubiquitous, before it became a pandemic, before a small globular virus became mankind’s biggest global public health crisis.

Author’s note: This article was originally published in January 2013 at the Pump Handle blog as a part of a series on “public health classics,” exploring some of the classic studies and reports that have shaped the field of public health. Check out the original article here

References
(1) E Woo. (July 23, 2009) Dr. Joel D. Weisman dies at 66; among the first doctors to detect AIDS. Los Angeles Times [Online]. Accessed November 16, 2012 athttp://www.latimes.com/news/nationworld/nation/la-me-joel-weisman23-2009jul23,0,7095313.story

(2) E Fee & TM Brown (2006) Michael S. Gottlieb and the Identification of AIDS. Am J Public Health; 96(6): 982–983.http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1470620/

(3) S Israelstam et al. (1978) Poppers, a new recreational drug craze. Can Psychiatr Assoc J;23(7): 493-5

(4) V. Quagliarello (1982) Acquired Immunodeficiency Syndrome: Current Status. Yale J Biol Med; 55(5-6): 443–452

(5) Centers for Disease Control (CDC) (1991) The HIV/AIDS epidemic: the first 10 years. MMWR Morb Mortal Wkly Rep; 40(22): 357. Accessible athttp://www.cdc.gov/mmwr/preview/mmwrhtml/00001997.htm

(6) UNAIDS (2012) UNAIDS World AIDS Day Report. UNAIDS. Accessible athttp://www.unaids.org/en/resources/campaigns/20121120_

Article Reference

Exonerating “Patient Zero”: The Truth About ‘Patient Zero’ And HIV’s Origins

The man blamed for bringing HIV to the United States just had his name cleared.

New research has proved that Gaëtan Dugas, a French-Canadian flight attendant who was dubbed “patient zero,” did not spread HIV, the virus that causes AIDS, to the United States.

A cutting-edge analysis of blood samples from the 1970s offers new insight into how the virus spread to North America via the Caribbean from Africa. More than 1.2 million people in the United States currently live with HIV.

The research, conducted by an international team of scientists, was published this week in the journal Nature.

“No one should be blamed for the spread of a virus that no one even knew about, and how the virus moved from the Caribbean to the US in New York City in the 1970s is an open question,” co-author of the research, Dr. Michael Worobey, a professor and head of the ecology and evolutionary biology department at the University of Arizona, said at a news conference Tuesday.

“It could have been a person of any nationality. It could have even been blood products. A lot of blood products used in the United States in the 1970s actually came from Haiti,” he said. “What we’ve done here is try to get at the origins of the first cases of AIDS that were ever noticed. … When you step back in time, you see a very interesting pattern.”

‘Patient zero’ and the power of a name

In 1981, researchers at the Centers for Disease Control and Prevention first documented a mysterious disease. In their research, they linked the human immunodeficiency virus, or HIV, to sexual activity.

In 1987, the National Review referred to him as the “Columbus of AIDS,” and the New York Post called him “the man who gave us AIDS” on its front page.

“We were quite annoyed by that, because it was just simply wrong, but this doesn’t stop people from saying it, because it’s so appealing. You know, ‘The man who brought us AIDS.’ Well, if it were true, it would be annoying, but since it isn’t true,

Gaëtan Dugas was dubbed “patient zero.”

However, the letter O was misinterpreted as a zero in the scientific literature. Once the media and the public noticed the name, the damage was done.

Dugas and his family were condemned for years. In Randy Shilts’ seminal book on the AIDS crisis, “And The Band Played On,” Dugas is referenced extensively and referred to as a “sociopath” with multiple sexual partners.

In 1987, the National Review referred to him as the “Columbus of AIDS,” and the New York Post called him “the man who gave us AIDS” on its front page.

“We were quite annoyed by that, because it was just simply wrong, but this doesn’t stop people from saying it, because it’s so appealing. You know, ‘The man who brought us AIDS.’ Well, if it were true, it would be annoying, but since it isn’t true, it’s even more annoying,” said Dr. James Curran, dean of Emory University’s Rollins School of Public Health and co-director of the university’s Center for AIDS Research.

Curran, who was not involved in the new research, coordinated the AIDS task force at the CDC in 1981 and then led the HIV/AIDS division until 1995.

“The CDC never said that he was patient zero and that he was the first person,” Curran said of Dugas.

“In addition to the potential damage to his reputation, it was also a damage to scientific plausibility. That there would be a single-point source to start the epidemic in the United States is not very likely. It’s more likely that several people were infected,” Curran said. “I think that the concept of patient zero has always been wrong and flawed, and scientists never said it.”

Dugas died in 1984 of AIDS-related complications. Now, more than 30 years later, scientists have used samples of his blood to clear his name.

Going back in time with blood

For the new research, Worobey and his colleagues gathered archival blood samples in New York and San Francisco that were originally collected for a hepatitis B study in 1978 and 1979. The samples came from men who had sex with men.

The researchers screened the samples and noticed that “the prevalence of HIV positivity in these early samples from hepatitis B patients is really quite high,” Worobey said Tuesday.

From the samples, the researchers recovered eight genome sequences of HIV, representing the oldest genomes of the virus in North America. They also recovered the HIV genome from Dugas’ blood sample.

As many of the samples had degraded over time, Worobey’s lab developed a technique called “RNA jackhammering” to recover the genetic material.

The technique involves breaking down the human genomes found in the blood and then extracting the RNA of HIV to recover genetic data about the virus, an approach that’s similar to what has been used to reconstruct the ancient genome of Neanderthals in separate studies.

“The major contribution which interested me the most was their capacity to restore full sequence genomes from very old serum samples using the jackhammer technique,” Curran said of the new research.

After analyzing the genomes, the researchers found no biological evidence that Dugas was the primary case that brought HIV to the United States, and the genome from Dugas appeared typical of the other strains already in the United States at the time.

The researchers discovered strong evidence that the virus emerged in the United States from a pre-existing Caribbean epidemic in or around 1970.

How HIV arrived in the United States

Sequencing genomes allows scientists to take a peek back in time to determine how a virus emerged and where it traveled by examining how many mutations appear in the genome.

Scientists estimate that HIV was transmitting in humans after a chimpanzee infected a single person sometime in the early 20th century in sub-Saharan Africa. The general consensus among scientists is that HIV then crossed the Atlantic and quickly spread through the Caribbean before it arrived in the United States, probably from Haiti, Curran said.

Scientists at the University of Oxford published a separate study in June suggesting that HIV spread through specific migration routes — based on tourism and trade — throughout the past 50 years as it made its way around the world.

The research team behind the new genetic analysis now hopes that its findings may lead to a better understanding of how HIV moved through populations — and how blaming a single patient for the pathogen’s rise remains troublesome.

“In many ways, the historical evidence has been pointing toward the fallacy of this particular notion of patient zero for decades,” Richard McKay, a historian of medicine at the University of Cambridge and a co-author of the new research, said at Tuesday’s news conference.

“The study shines light from different angles to better understand the complexity of an important period in the past,” he said. “In view of this complexity, one of the dangers of focusing on a single patient zero when discussing the early phases of an epidemic is that we risk obscuring important, structural factors that might contribute to its development: poverty, legal and cultural inequalities, barriers to health care and education. These important determinants risk being overlooked.”

Reference

Gay History: 30 Years Later, a Look at the First AIDS Drug.

The FDA approved AZT in a record 20 months, a move that remains controversial today

All these years on, we are finally telling the truth about this insidiously poisonous drug, and the great marketing job by Big Pharma to sell it to a desperately ill population of people, and doctors who were also desperate, to provide some hope for their patients! The movie “Dallas Buyers Club” tells some of the story, of those who wanted something better than AZT to assist them in staying alive until something beneficial came along – which it eventually did! Things were not quite so bad here as far as pricing went, as with our Medicare system, the drugs were listed on the Pharmaceutical Benefits Scheme as soon as they became available, and cost a mere couple of dollars per script to buy. But the big sell by Big Pharma also happened here, as did the results of several badly run trials. Like many, the biggest mistake I ever made back in those early days of drug treatments was to let my doctor eventually talk me into taking AZT – against my better judgement! And it’s not just me, but many others who will attest that all our immune system and declining health problems started at the same time we decided to take AZT. It’s not as if we were only on a couple of pills a day – we were on massive doses, and as I have already said, this drug was poison…”human Ratsac” was how it was described in a report from the “Concorde” trial…another unethically run trial, but one that didn’t sugar-coat the truth about AZT. Those who took the massive doses of AZT back in the late 80s/early 90s suffered from problems such as anaemia, peripheral neuropathy, and renal problems…and still do to this day!

HIV was first reported in 1981, but it wasn’t until six years later—in March 1987—that a drug to fight the virus was approved by the Food and Drug Administration (FDA). On the 30th anniversary of this milestone, Time magazine takes a look at the story behind the controversial med azidothymidine, commonly known as AZT.

Also known as Retrovir or zidovudine, the compound AZT was not originally created with HIV in mind but was developed in the 1960s to battle cancer. Decades later, scientists at pharmaceutical giant Burroughs Wellcome made a version of AZT to fight HIV.

To fast-track the med, the drugmaker conducted a trial with 300 people who had AIDS. After 16 weeks, it was halted because those taking AZT were doing so much better than those not on the med. The results were considered a breakthrough, and the FDA approved the drug on March 19, 1987, in a record 20 months, according to Time.

The approval was granted despite many questions remaining unanswered—for example, how long did the benefits last?—and despite other issues surrounding the trial itself. In fact, Time notes, the trail remains controversial today.

Then came a bigger controversy: the price tag. At about $8,000 a year ($17,000 in today’s dollars), AZT was unattainable to many.

Today, we have more than 41 drugs to treat HIV, many in combo form and with much fewer side effects.

Reference

Gay History: When Gay Journalists Were Closeted: A History of AIDS Coverage at ‘The Times’

Mark Frankel

November 23, 2015
Days after New York State approved marriage equality in 2011, Samuel G. Freedman, a School of Journalism professor and former reporter for The New York Times, mused to friends about how the world had changed since he had worked at the paper in the 1980s.
Now an enthusiastic proponent of gay marriage, The Times was then a place where gay reporters feared being exiled to obscure beats and watching their careers wither. Freedman’s musings centered on his friend and mentor, Jeff Schmalz, a brilliant Times reporter dying of the disease who in 1992 and 1993 produced groundbreaking articles about people living with AIDS.
“Jeffrey who?” people often asked. Out of those encounters has come Freedman’s eighth book, Dying Words: The AIDS Reporting of Jeff Schmalz and How it Transformed The New York Times.
Produced as an oral history of dozens of Schmalz’s colleagues and friends, the book and an accompanying radio documentary focus on how journalism responded to the AIDS crisis in the 1980s and early ’90s, when many gay and lesbian journalists felt tremendous professional pressure to remain closeted, and discrimination against them was widespread. It also recounts the moment AIDS became a full-fledged health crisis, breaking out of the gay and IV-drug communities into the larger population.
“Jeff’s reporting played a real role in starting to turn opinion, certainly within The Times, but also within the broader public, from fear, suspicion, finger-pointing and blaming gays, to empathy and acceptance,” said Freedman. The 60-minute radio program will be broadcast on some two dozen public radio stations as part of events marking World AIDS Day on December 1. That same day, Freedman will host a panel on Dying Words at 6 p.m. at the Journalism School.
Schmalz was a rising star at the Times in the 1980s, a consummate journalist and skilled newsroom politician and mentor to younger journalists. When Freedman arrived at the paper in 1981, he soon was among those taken under Schmalz’s wing.
Though out of the closet to close friends at the paper, Schmalz kept his orientation hidden from higher-ups such as Abe Rosenthal, its executive editor from 1977 to 1986, and then-publisher Arthur Sulzberger.
“Abe Rosenthal hired me and promoted me, and I owe him a lot, but in doing this research I became very aware of his antipathy toward gay staffers at The Times,” said Freedman. “And it also became apparent that, in a less visible way, Punch Sulzberger also had a blind spot about gays.”
Critics inside and outside the newsroom accused the paper of being late to cover the AIDS crisis.
In December 1990, Schmalz, then deputy national editor, suffered a seizure in the newsroom. The diagnosis was full-blown AIDS, then a death sentence. For Schmalz, the closet was no longer an option. “Jeff commanded tremendous authority at the Times. So for him to come out had a tremendously sensitizing effect on the paper,” recalled Freedman.
When Schmalz returned to the paper in mid-1992, he was sick but determined to report on AIDS. By then, the paper had a new editor and publisher and, Freedman said, was more accepting of its gay and lesbian employees.
Over the next 15 months, Schmalz captured the many faces of AIDS, gay and straight, in some three dozen articles. He profiled Magic Johnson, the Los Angeles Lakers forward who quit basketball when he was diagnosed as HIV-positive, and AIDS activists Mary Fisher and Larry Kramer. “In a weird way, the diagnosis set him free,” recalled his sister, Wendy Schmalz Wilde. “He found a new empathy for other people who were sick and dying.”
Schmalz’s reporting took AIDS “from a medical story, a public health story, a science story, and made it a deeply human story,” said Freedman. “He got on the beat right when this was a disease crossing the lines of race, class and sexual orientation.” His articles also raised the bar on the paper’s AIDS coverage, setting a standard for other news organizations. His last story, which decried growing public complacency, appeared several weeks after his death in November 1993.
Freedman teamed with veteran radio producer Kerry Donahue to produce the radio documentary, which will be distributed by the Public Radio Exchange. Funds came from the Journalism School and a Kickstarter campaign that raised $28,000. A significant backer was current New York Times publisher Arthur Sulzberger Jr., who contributed his own reminiscences to Dying Words.
Schmalz’s death still haunts Freedman. “Jeff was an example of a supremely talented person who died at 39,” he said. “The world is still losing incredibly talented people at young ages. It’s a reminder of the continuing need to do the research that will cure the disease and of the role that journalists need to play.”

In December 1990, Schmalz, then deputy national editor, suffered a seizure in the newsroom. The diagnosis was full-blown AIDS, then a death sentence. For Schmalz, the closet was no longer an option. “Jeff commanded tremendous authority at the Times. So for him to come out had a tremendously sensitizing effect on the paper,” recalled Freedman.

When Schmalz returned to the paper in mid-1992, he was sick but determined to report on AIDS. By then, the paper had a new editor and publisher and, Freedman said, was more accepting of its gay and lesbian employees.

Over the next 15 months, Schmalz captured the many faces of AIDS, gay and straight, in some three dozen articles. He profiled Magic Johnson, the Los Angeles Lakers forward who quit basketball when he was diagnosed as HIV-positive, and AIDS activists Mary Fisher and Larry Kramer. “In a weird way, the diagnosis set him free,” recalled his sister, Wendy Schmalz Wilde. “He found a new empathy for other people who were sick and dying.”

Schmalz’s reporting took AIDS “from a medical story, a public health story, a science story, and made it a deeply human story,” said Freedman. “He got on the beat right when this was a disease crossing the lines of race, class and sexual orientation.” His articles also raised the bar on the paper’s AIDS coverage, setting a standard for other news organizations. His last story, which decried growing public complacency, appeared several weeks after his death in November 1993.

Freedman teamed with veteran radio producer Kerry Donahue to produce the radio documentary, which will be distributed by the Public Radio Exchange. Funds came from the Journalism School and a Kickstarter campaign that raised $28,000. A significant backer was current New York Times publisher Arthur Sulzberger Jr., who contributed his own reminiscences to Dying Words.

Schmalz’s death still haunts Freedman. “Jeff was an example of a supremely talented person who died at 39,” he said. “The world is still losing incredibly talented people at young ages. It’s a reminder of the continuing need to do the research that will cure the disease and of the role that journalists need to play.”

Reference

Gay History: Lex Watson: Leading Gay Rights Activist and Trailblazer.

LEX WATSON, 1943-2014

For many of his generation and beyond, Lex Watson was the face of gay activism in Sydney.

For many of his generation and beyond, Lex Watson was the face of gay activism in Sydney. He was a foundation member of the Campaign Against Moral Persecution (CAMP), the organiser of the first gay rights demonstration in Australia, a longtime passionate advocate of homosexual law reform and of anti-discrimination legislation, a pioneer AIDS activist, and in later years, a keen advocate for the preservation of gay community history.

Lex Watson addressing gay rights activists setting up their ‘Gay Embassy’ opposite former NSW premier Neville Wran’s home in Woollahra to protest against Club 80 arrests in 1983.

CREDIT: ADRIAN SHORT

Alexander Watson was born in Perth on January 29, 1943, the son of Alec Watson, a medical practitioner in Geraldton, and his wife, Margaret (nee Newnham), a nurse. Lex started his education in Geraldton, then the family settled in Perth, where Alec became a well-known surgeon.

Despite his parents’ wish to place him at Geelong Grammar, or the King’s School in Parramatta, Lex was determined to go to Perth Modern. There he developed a lifelong love of languages, particularly German, and music, again particularly German, from Beethoven to the present day. At school he acted in Gilbert & Sullivan productions, directed by a teacher who remarked that he was ‘‘rather self-confident and arrogant’’, an observation often to be made of him throughout his life.

Lex Watson (left) and Robert French signing statutory declarations in 1983.

At puberty, Watson’s parents gave him a booklet on sex that contained a small non-judgmental paragraph on homosexuality. ‘‘So that’s what it is called,’’ he thought. He then looked up homosexuality in the school library, but all the texts he consulted talked of disease and perversion. Watson’s response was, ‘‘Why, they’ve got it wrong!’’ but it was a defining moment in his life.

Watson won a scholarship to the University of Western Australia, where he started in 1960. He did an arts degree and studied history and philosophy He read John Stuart Mill, whose classic liberalism became the touchstone of his life and later activism. He later became a supporter of the Council of Civil Liberties.

For his honours year, Watson transferred to the government department at the University of Sydney. It was there that he worked for the remainder of his academic life, teaching Australian politics to hundreds of students, many of whom became academics and political activists themselves.

The homosexual law reforms in Britain in 1967 sparked Watson’s interest and he became involved with reform in Australia because ‘‘it was needed and therefore you did it’’. He was in Canberra in 1970 on the weekend of the formation of the ACT Homosexual Law Reform Society and joined up. He then attended a public meeting in Sydney, organised by the Humanist Society, which formed a HLR sub-committee, which he became a member of.

Lex Watson as the Empress of Sydney in 1982.

These moves, however, were ‘‘wiped off the table’’ by the announcement by John Ware and Christabel Poll in September 1970 of the formation of the Campaign Against Moral Persecution (CAMP), the first openly homosexual group in Australia. Watson became a foundation member, and in early 1972, along with Sue Wills, became a co-president.

Ware credited Watson with making the organisation political, and it was Watson who organised the first gay demonstration, outside the Liberal Party headquarters in Ash Street, Sydney in October 1971.

Watson, as an academic, had contacts in the Liberal Party and got to hear of the challenge that conservative Jim Cameron was to bring against the federal pre-selection of Tom Hughes, after Hughes as federal attorney-general had raised the issue of homosexual law reform.

One of the major achievements of CAMP under Watson and Wills was highlighting the dangers of aversion therapy and psycho-surgery as then practised against women and homosexuals. That homosexual people then began to cease consulting practitioners for a ‘‘cure’’ for their sexual orientation was a triumph for CAMP.

Watson and Wills resigned from CAMP in October 1974 as the organisation concentrated more on its phone-counselling services.

Watson continued his activism and advocacy through newspaper articles in the gay press. In 1976 he, memorably and courageously, appeared on the ABC’s Monday Conference program in Mt Isa. Some of the audience were hostile, one member even pouring a bottle of sewage over his head. Watson maintained his composure throughout and won over the audience.

With the assistance of fellow academic and activist Craig Johnston in 1980, Watson approached Barrie Unsworth of the NSW Trades & Labor Council after the University of Sydney staff union had passed an anti-discrimination motion in relation to gays and lesbians. Unsworth was receptive and had a similar motion passed in the council. The move was the beginning of Gay Rights Lobby (GRL) and a new push for homosexual law reform in NSW, as well as support for a bill to incorporate homosexuality under the terms of the Anti-Discrimination Act.

Watson, in a dispute over tactics and his administrative style, fell out with GRL but that did not stop him and his fellow activists continuing to work together. After the police raid on Club 80 in 1983, it was Watson who suggested that the activists sign statutory declarations admitting to having committed buggery and to present them to the vice squad, seeking arrest. Watson was one of the first to present but the police had been forewarned and refused to make arrests.

He was a member of a delegation to premier Neville Wran in May 1984 on the morning of the introduction of his Private Members Bill to repeal the ‘‘buggery’’ provisions of the NSW Crimes Act. Watson attempted to persuade the premier to introduce an equal age of consent clause and when Wran refused, he argued for the inclusion of protections for persons between the ages of 16 and 18 years, which Wran enthusiastically agreed to. A new clause had been typed onto the bill when it reached the floor of the Legislative Assembly that day.

In 1982, the Chameleons social group had crowned Watson ‘‘Empress of Sydney’’, the first time for someone from outside the ‘‘drag’’ industry. He was proud of his only appearance in ‘‘drag’’, sporting a black velvet strapless gown. He wore the gown to the ‘‘Gay Embassy’’, a caravan that had been set up in front of the premier’s house in late 1983 as another move to push the law reform agenda. The embassy had been Watson’s idea.

Watson became aware of the problem of HIV/AIDS in 1982. He later became involved in the disputes with the Blood Bank, pointing out that the only solution to the implementation of sound public health policy relating to HIV was for the medical profession to engage in a dialogue with the gay community. He, and others, set up the AIDS Action Committee which, following federal government funding, morphed into the AIDS Council of NSW, of which Watson became the first president.

Watson later stepped down as president although he stayed on the committee. Truth to tell, he was not the greatest of administrators. He operated best as an individual activist, always sharp and on-message.

For many years Watson was also a block captain of marshals at Mardi Gras parades. In 2010, ACON awarded Watson and Wills their GLBTI Community Hero Award marking the 40th anniversary of the formal foundation of CAMP, and they were thrilled to ride up front in the 2011 Sydney parade.

After retirement from the University of Sydney, Watson became involved in the Pride History Group, Sydney’s gay and lesbian history group. He was president at the time that he died, assisting in the organisation of a history conference, set for November, on homosexual law reforms, his major life’s work. The conference will be dedicated to his memory.

Lex Watson is survived by his sister Wendy, brother-in-law Richard and nephews Nicholas and Ben and their families.

Reference

Gay History: Here are 51 more weird and cool facts from LGBTI history.

Did you know the pope in the 1400s legalized gay sex during the summer months? Discover more here

1 Some of the world’s oldest rock paintings which were discovered in Sicily, made about 10,000 years ago, showed two male phallic figures having sex.

2 Ancient Roman historian Plutarch wrote about The Great Mother, an intersex deity depicted with both sets of genitals. Her sacred priestesses, as found in the earliest civilizations in Babylonia and Akkad, were eunuchs and trans women.

3 In ancient Assyrian society, if a man were to have sex with another man of equal status, it was thought that trouble would leave him and he would have good fortune.

4 A Hindu medical text dating back to at least 600 BC made several explicit references to gay people; kumbhika – men who bottom during anal sex; asekya – men who swallow semen; and sandha – men who speak and act like women. The text also claimed it was possible for two women to create a child together but said it would end up being ‘boneless’.

The Hindu god Shiva is often represented as Ardhanarisvara, a unified entity of him with his consort Parvati. This sculpture is from the Elephanta Caves near Mumbai.

5 In Egypt 1503 BC, Hatshepsut became the second woman to rule and chose to take the title of king. She donned male clothing and wore a false beard.

Statue of Hatshepsut on display at the Metropolitan Museum of Art

6 Julius Caesar and Claudius were considered ‘abnormal’ for refusing to take male lovers. Julius had, at least, an affair with Nicomedes, the king of Bithymia, as a youth.

7 Ancient Celtic men openly preferred male lovers. According to Diodorus in the 1st century BC, he wrote ‘young men will offer themselves to strangers and are insulted if the offer is refused’. Sex between men was very likely an important ‘bonding ritual’.

8 One of the first Roman emperors, Elagabalus, could have been transgender. Before dying at the age of 18, it was reported the emperor had married a male athlete and would go out disguised as a prostitute.

9 Wales had a gay king. King Maelgwn of Gwynedd of the sixth century was described as ‘addicted very much to the detestable vice of sodomy’.

10 St Thomas Aquinas, a priest from the 1200s, is considered the father of homophobia. At a time when homosexuality was often treated as an ‘open secret’, he preached widely that it was ‘unnatural’, similar to bestiality, and argued sodomy is second only to murder in the ranking of sins.

11 Pope Sixtus IV, of the 1400s, was reported to have legalized sodomy during the summer months.

Posthumous portrait of Pope Sixtus IV by Titian

12 In the Klementi tribe of Albania, first observed in the 1400s, if a virgin swore before 12 witnesses that she would not marry, she was then recognized as male, carried weapons and herded flocks.

13 The French called homosexuality the ‘Italian vice’ in the 16th and 17th centuries, the ‘English vice’ in the 18th century, the ‘Oriental vice’ in the 19th century, and the ‘German vice’ starting from 1870 and into the 20th century.

14 Most people know the origins of the word ‘gay’, but the word ‘lesbian’ was first used from around 1590 to mean a tool – a stick made of lead (from the isle of Lesbos) used by stonemasons. It was flexible so it could be used to measure or mold objects to irregular shapes. A ‘lesbian rule’ was also used to mean being flexible with the law.

15 Julie D’Aubigny was a 17th century bisexual French opera singer and fencing master who fought and won at least 10 life-or-death duels, performed nightly shows on the biggest opera stage in the world and once took the Holy Orders just so she could sneak into a convent and have sex with a nun.

16 An 18th century English term for sex between women was the ‘Game of Flats’.

17 A molly house was an 18th century English term for a room or bar where gay men would meet. Patrons of the molly house would enact mock weddings and children being born.

Molly-houses were often considered as brothels in legal proceedings.[1] A male brothel, illustration by Léon Choubrac (known also as Hope), included in Léo Taxil’s book La prostitution contemporaine, 1884, pg. 384, Plate VII

18 Trans man Albert Cashier fought for the Union in the American Civil War. At one point, he was captured by the Confederates but managed to escape by overpowering a prison guard.

(November, 1864)[1]

19 A Boston marriage, in the 19th century, referred to two women living together financially independent of a man.

Sarah Ponsoby and Lady Eleanor Butler, also known as the Ladies of Llangollen, lived together in a Boston marriage.

20 The word ‘homosexual’ (coined in 1869) is older than the word ‘heterosexual’ (1892).

21 Edward White Benson, the Archbishop of Canterbury from 1883 to 1896, was thought to have been repressing his homosexuality. His wife, brother-in-law and five of his six children were also gay.

22 Dude used to be a homophobic slur.

23 UK Prime Minister Winston Churchill, when he was 21, was accused of ‘gross immorality of the Oscar Wilde type’.

24 Doctors in the early 1900s thought bicycles would turn women gay.

25 Wings, the first Oscar-winning film in 1920, featured a man-on-man kiss.

Richard Arlen in Wings

26 In the 1930s, a Disney comic strip showed Mickey Mouse as a violent homophobic thug. In the strip, he beats up an effeminate cat and called him a ‘cream puff inhaler’.

27 The British secret intelligence service tried to spike Hitler’s carrots with female hormones to ‘turn’ him into a woman.

28 Sister Rosetta Thorpe, a bisexual black woman, is credited with inventing rock n roll.

29 World War 2 genius and cryptographer Alan Turing said he had lost a mystery box of treasure in Bletchley Park but could no longer find it as he couldn’t crack his own code.

30 The 1948-53 Kinsey study found a third of men had a homosexual experience.

31 A drag queen was the first openly gay candidate to run for US public office. José Sarria won 6,000 votes in his 1961 campaign for the San Francisco Board of Supervisors.

Jose Sarria dines in Kenmore Square during 2010 visit to Boston

32 The death and funeral of Judy Garland is credited with inspiring the Stonewall Riots.

33 Pride in New York City was never really ‘Gay Pride’. The first was mainly organized by bisexual woman Brenda Howard.

34 The original name for Pride was ‘Gay Power’. Other suggested names included ‘Gay Freedom’, ‘Gay Liberation’ and ‘Christopher Street Liberation Day’.

The Stonewall Inn located in Greenwich Village was the site of the June 1969 Stonewall riots. That event in New York City’s queer history has served as a touchstone for various social movements, as well as the catalyst for Pride parades around the world.

35 Dracula author Bram Stoker married Oscar Wilde’s first girlfriend.

36 One of the first openly gay athletes was Dodgers outfielder Glenn Burke in the late 1970s. He told his teammates, who apparently didn’t care, and was officially outed in 1982. He is also credited with creating the high-five.

37 A man who saved President Ford from assassination had his life ruined when the media outed him as gay.

38 L Ron Hubbard, the founder of Scientology, had a son Quintin who was tasked to take over from the Church of Scientology. When Quintin came out as gay, he died of an ‘apparent suicide’ in 1976.

Geoffrey Quentin McCaully Hubbard

39 Mel Boozer, the African American human rights activist, became the first openly gay person ever nominated for the office of Vice President of the United States in 1980.

Melvin “Mel” Boozer

40 Sally Ride was the first American woman to go into space. She was also the first LGBTI astronaut and remains the youngest American to have traveled to space at the age of 32.

41 In the 1980s, religious groups tried to ban Dungeons and Dragons for being satanic as it ‘promoted homosexuality’.

42 In 1987, Delta Airlines apologized for arguing in plane crash litigation that it should pay less in compensation for the life of a gay passenger than for a heterosexual one because he may have had AIDS.

43 Princess Diana went to a London gay bar, accompanied by Freddie Mercury, disguised as a man.

44 The Etoro tribe in Papua New Guinea is where homosexuality is the norm and heterosexuals are excluded. They believe young men only become adults if they have a daily intake of semen to ‘properly mature’.

45 Queen’s The Show Must Go On was recorded as Freddie Mercury was dying due to complications from AIDS. According to Brian May, Mercury said: ‘I’ll fucking do it, darling’ – vodka down – and went in and delivered the incredible vocal.

46 When Ellen DeGeneres came out on her sitcom, Birmingham in Alabama refused to show it. A local LGBTI group sold out a 5,000-seat theatre so people could watch it via satellite.

Ellen DeGeneres, an Emmy winner, came out, as well as her fictional counterpart.

47 Stephen Hillenburg, one of the creators of Spongebob Squarepants, revealed in 2002 that Spongebob is asexual.

48 The couple in Lawrence vs Texas, the case that stopped sodomy being punishable in the US in 2003, didn’t actually have sex. They weren’t even a couple.

49 The country that watches the most gay porn is Kenya, a 2013 study found. In a recent poll, 92% of Kenyans claimed they thought homosexuality should be illegal.

50 Fun Home, the award-winning, lesbian musical, is the first in the history of the Tonys to be written entirely by women.

51 In 2015, it was announced a crater on Pluto’s moon will be named after George Takei’s Star Trek character, Sulu.

An area of Charon will named Sulu

Reference

Gay History: The Photo That Changed The Face Of HIV/AIDS!

By Savannah Cox

Published August 1, 2015

Updated July 18, 2017

Source: Time

Nearly 25 years ago, David Kirby lay on the cusp of death. Kirby, 32, had nearly reached the end of his fatal fight against HIV/AIDS when journalism student Therese Frare took the photo seen above.

In the photo, Kirby’s gaze appears vacant; he is a man resigned to a fate that his family–also broken by HIV/AIDS–just cannot bring itself to see. For many, the raw anguish radiating from this photo exemplified the tragedy of the HIV/AIDS epidemic, which at this point in time had struck millions around the world.

The photo, which was later published in Life and then used by clothing company United Colors of Benetton in an advertising campaign, is said to have changed the face of AIDS.

When published, public understanding of HIV/AIDS was minimal. Many thought the disease confined its victims to those who identified as homosexual; few considered the damage it inevitably inflicted on an AIDS victim’s family. This photo helped change that.

Frare recently sat down with Time to discuss the photo, and her memories of living through–and documenting–a span of years that devastated countless families. We provide an excerpt below:

“I started grad school at Ohio University in Athens in January 1990. Right away, I began volunteering at the Pater Noster House, an AIDS hospice in Columbus. In March I started taking photos there and got to know the staff — and one volunteer, in particular, named Peta — who were caring for David and the other patients.

On the day David died, I was visiting Peta. Some of the staff came in to get Peta so he could be with David, and he took me with him. I stayed outside David’s room, minding my own business, when David’s mom came out and told me that the family wanted me to photograph people saying their final goodbyes.

I went in and stood quietly in the corner, barely moving, watching and photographing the scene. Afterwards I knew, I absolutely knew, that something truly incredible had unfolded in that room, right in front of me.

Early on, I asked David if he minded me taking pictures, and he said, ‘That’s fine, as long as it’s not for personal profit.’ To this day I don’t take any money for the picture.

But David was an activist, and he wanted to get the word out there David Kirby was born and raised in a small town in Ohio. A gay activist in the 1980s, he learned in the late Eighties — while he was living in California and estranged from his family — that he had contracted HIV. He got in touch with his parents and asked if he could come home; he wanted, he said, to die with his family around him. The Kirbys welcomed their son back.about how devastating AIDS was to families and communities. Honestly, I think he was a lot more in tune with how important these photos might become.”

David Kirby was born and raised in a small town in Ohio. A gay activist in the 1980s, he learned in the late Eighties — while he was living in California and estranged from his family — that he had contracted HIV. He got in touch with his parents and asked if he could come home; he wanted, he said, to die with his family around him. The Kirbys welcomed their son back.

Peta, for his part, was an extraordinary (and sometimes extraordinarily difficult) character. Born Patrick Church, Peta was “half-Native American and half-White,” Frare says, “a caregiver and a client at Pater Noster, a person who rode the line between genders and one of the most amazing people I’ve ever met.”

“On the day David died, I was visiting Peta,” Frare, who today lives and works in Seattle, told LIFE. “Some of the staff came in to get Peta so he could be with David, and he took me with him. I stayed outside David’s room, minding my own business, when David’s mom came out and told me that the family wanted me to photograph people saying their final goodbyes. I went in and stood quietly in the corner, barely moving, watching and photographing the scene. Afterwards I knew, I absolutely knew, that something truly incredible had unfolded in that room, right in front of me.”

“Early on,” Frare says of her time at Pater Noster House, “I asked David if he minded me taking pictures, and he said, ‘That’s fine, as long as it’s not for personal profit.’ To this day I don’t take any money for the picture. But David was an activist, and he wanted to get the word out there about how devastating AIDS was to families and communities. Honestly, I think he was a lot more in tune with how important these photos might become.”

Frare pauses, and laughs. “At the time, I was like, Besides, who’s going to see these pictures, anyway?”

Over the past 20 years, by some estimates, as many as one billion people have seen the now-iconic Frare photograph that appeared in LIFE, as it was reproduced in hundreds of newspaper, magazine and TV stories — all over the world — focusing on the photo itself and (increasingly) on the controversies that surrounded it.

Frare’s photograph of David’s family comforting him in the hour of his death earned accolades, including a World Press Photo Award, when published in LIFE, but it became positively notorious two years later when Benetton used a colorized version of the photo in a provocative ad campaign. Individuals and groups ranging from Roman Catholics (who felt the picture mocked classical imagery of Mary cradling Christ after his crucifixion) to AIDS activists (furious at what they saw as corporate exploitation of death in order to sell T-shirts) voiced outrage. England’s high-profile AIDS charity, the Terrence Higgins Trust, called for a ban of the ad, labeling it offensive and unethical, while powerhouse fashion magazines like Elle, Vogue and Marie Claire refused to run it. Calling for a boycott of Benetton, London’s Sunday Times argued that “the only way to stop this madness is to vote with our cash.”

“We never had any reservations about allowing Benetton to use Therese’s photograph in that ad,” David Kirby’s mother, Kay, told LIFE.com. “What I objected to was everybody who put their two cents in about how outrageous they thought it was, when nobody knew anything about us, or about David. My son more or less starved to death at the end,” she said, bluntly, describing one of the grisly side effects of the disease. “We just felt it was time that people saw the truth about AIDS, and if Benetton could help in that effort, fine. That ad was the last chance for people to see David — a marker, to show that he was once here, among us.”

David Kirby passed away in April 1990, at the age of 32, not long after Frare began shooting at the hospice. But in an odd and ultimately revelatory twist, it turned out that she spent much more time with Peta, who himself was HIV-positive while caring for David, than she did with David himself. She gained renown for her devastating, compassionate picture of one young man dying of AIDS, but the photographs she made after David Kirby’s death revealed an even more complex and compelling tale.

Frare photographed Peta over the course of two years, until he, too, died of AIDS in the fall of 1992.

“Peta was an incredible person,” Frare says. Twenty years on, the affection in her voice is palpable. “He was dealing with all sorts of dualities in his life — he was half-Native American and half-White, a caregiver and a client at Pater Noster, a person who rode the line between genders, all of that — but he was also very, very strong.”

As Peta’s health deteriorated in early 1992 — as his HIV-positive status transitioned to AIDS — the Kirbys began to care for him, in much the same way that Peta had cared for their son in the final months of his life. Peta had comforted David; spoken to him; held him; tried to relieve his pain and loneliness through simple human contact — and the Kirbys resolved to do the same for Peta, to be there for him as his strength and his vitality faded.

Kay Kirby told LIFE.com that she “made up my mind when David was dying and Peta was helping to care for him, that when Peta’s time came — and we all knew it would come — that we would care for him. There was never any question. We were going to take care of Peta. That was that.

“For a while there,” Kay remembers, “I took care of Peta as often as I could. It was hard, because we couldn’t afford to be there all the time. But Bill would come in on weekends and we did the best we could in the short time we had.”

Kay describes Peta, as his condition worsened in late 1991 and 1992, as a “very difficult patient. He was very clear and vocal about what he wanted, and when he wanted it. But during all the time we cared for him, I can only recall once when he yelled at me. I yelled right back at him — he knew I was not going to let him get away with that sort of behavior — and we went on from there.”

Bill and Kay Kirby were, in effect, the house parents for the home where Peta spent his last months.

“My husband and I were hurt by the way David was treated in the small country hospital near our home where he spent time after coming back to Ohio,” Kay Kirby said. “Even the person who handed out menus refused to let David hold one [for fear of infection]. She would read out the meals to him from the doorway. We told ourselves that we would help other people with AIDS avoid all that, and we tried to make sure that Peta never went through it.”

“I had worked for newspapers for about 12 years already when I went to grad school,” Therese Frare says, “and was very interested in covering AIDS by the time I got to Columbus. Of course, it was difficult to find a community of people with HIV and AIDS willing to be photographed back then, but when I was given the okay to take pictures at Pater Noster I knew I was doing something that was important — important to me, at least. I never believed that it would lead to being published in LIFE, or winning awards, or being involved in anything controversial — certainly nothing as epic as the Benetton controversy. In the end, the picture of David became the one image that was seen around the world, but there was so much more that I had tried to document with Peta, and the Kirbys and the other people at Pater Noster. And all of that sort of got lost, and forgotten.”

Lost and forgotten — or, at the very least, utterly overshadowed — until LIFE.com contacted Frare, and asked her where the photo of David Kirby came from.

“You know, at the time the Benetton ad was running, and the controversy over their use of my picture of David was really raging, I was falling apart,” Frare says. “I was falling to pieces. But Bill Kirby told me something I never forgot. He said, ‘Listen, Therese. Benetton didn’t use us, or exploit us. We used them. Because of them, your photo was seen all over the world, and that’s exactly what David wanted.’ And I just held on to that.”

After the Benetton controversy finally subsided, Therese Frare went on to other work, other photography, freelancing from Seattle for the New York Times, major magazines and other outlets. While the world has become more familiar with HIV and AIDS in the intervening years, Frare’s photograph went a long way toward dispelling some of the fear and, at times, willful ignorance that had accompanied any mention of the disease. Barb Cordle, volunteer director at Pater Noster when David Kirby was there, once said that Frare’s famous photo “has done more to soften people’s hearts on AIDS than any other I have ever seen. You can’t look at that picture and hate a person with AIDS. You just can’t.”

References