Category Archives: HIV/AIDS

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