Tag Archives: HIV

Sacrilege: Living HIV Outside The Square!

“Sacrilege” may seem like a strange word to use in relationship to ones life. Its religious connotation is “the violation or profanation of anything sacred or held sacred” thus by a very loose expansion of the meaning – a human life, as it is, in many respects, regarded as sacred. Stretching definitions even further – and many would not be surprised that I don’t take it literally – infecting it with HIV could be considered a sacrilege, be it intentional or unintentional. The sacred has been violated! Also, as a HIV+ man, it is expected that I will follow a set of “rules” as dictated by various community groups, doctors and specialists! To totally ignore the expected, and go off down your own path would be considered by many to be sacrilege!

I can’t contemplate continuing to live with HIV without viewing it within the framework of my life! No war is without its battles, without its dark times, yet still seeing the light at the end of the tunnel! If I had to use a word to describe myself, belligerant comes straight to mind – but then I think to myself “That’s a bit harsh!”. Okay…cantankerous is one that has been used by those close to me, so that’s sort of acceptable, and it’s true! Curmudgeonly… a word I love, but I’m not really surly enough! So I’ll just stick with stubborn! I could claim that it’s a Capricornian trait, but it goes deeper than that.

At 12-years-of-age, my stubborn streak was already settling in. Though unrecognised by me at the time, it was a survival mechanism that was to serve me well for most of my life. It is only when I look back to 1965, that I realise what a testing ground it was: my mother left my father; a bitch of a housekeeper who was to forever change our family dynamics; and my father jumping over The Gap with Kevin, my brother – resulting in my brothers death – would have sent a less resilient person into dark depths that they may never have risen from! Considering the lack of psychological & emotional support available at that time, to have come out of that year relatively unscathed had to show a stoicism way beyond that normally expected from one so young. By digging my heels in, ignoring all the negativity around me, and just “getting on with it” – a philosophy I still embrace – I was to set in place a mental tenacity that was to impact my life for decades to come!

There was no love lost between my father & myself! Even prior to Kevin’s death, I had seen – and felt –  a violent streak in his nature; almost a need to punish those who had a life contrary to his. He could be a right royal cunt! The only way I could establish my own independence – which had flowered rapidly after Kev’s death – was open defiance! He told me not to smoke…so I smoked; not to drink…so I drank; to get a trade…I went in every direction but; and to get my hair cut…I left it to grow – despite a threat, after an argument about it, to “knock my block off”! He even denied me a 21st birthday celebration, because he had been at war when his fell due…I organised it myself. My grandmother left me a small inheritance, and just after my 21st, I moved out of home, into my own apartment. After he remarried and moved to Vincentia (on the south coast of NSW), we had little contact. After his suicide via carbon monoxide poisoning in his car in 1978, I never cried a single tear – but just let out a massive sigh of relief! I was free! As the ultimate act of a true prick, he left me nothing in his will – it all went to my step-family! Just to show that they were all tarred with the same brush, directly after his death his sisters indulged themselves in a game of telephone harrassment against my step-mother. I was glad to walk away from them all!

As soon as the old man died, I came out! It is the one time my usual defiance was kept capped. I had seen what he wss capable of with my brother, and my survival instinct whispered to me to be  quiet about this issue. Again, I had witnessed him & his mates yelling “poofter” out of the car window to some poor guy who did nothing more than wear a pink shirt! As I said – they were pricks! Stubbornness does not necessarily equal a death wish! Then, having stepped out of the closet, I megaphoned my life choice to all and sundry, including my employees. No one seemed particularly surprised! There were some in my workplace who were not impressed with my sexual preferences, and made no secret of it! My pure indifference to them was reward enough. My decision to desert the security of a regular job had nothing to do with my detractors…it was based purely on a desire to break free of a life I wanted to leave behind. But the curve balls were to keep coming, with no inkling at that time of the odd parallel path that both being gay, and being HIV+ were going to lead me down!


Even as I was coming out in Melbourne in 1980, snippets about a lethal cancer, that was killing gay men who frequented the saunas in the USA, were appearing in the local press here. I read them, and like many others, though not panicking, was left with a feeling of unease. That unease turned to immense consternation over the next couple of years, as the reports became more alarmist, and HIV crossed the ocean to our shores. By the time they developed a test in 1985, I for one was already stacking the odds – and not in my favour! In retrospect, this may have been a defence mechanism against coming up HIV+…that if I did, I was already prepared for it, and if I didn’t I could just breath a sigh of relief. The former proved to be true!

Back in the day, there was a severe lack of counselling, and given the sheer volume of testing results coming in at that time, was cursory at its best. When I went to get my result – and I don’t know why I made the presumption I did – the positive result was not a shock. These were strange (ethereal?) times, and for those of us admitting to our – then – death sentence, it was almost like belonging to a select club.

There was a two year window given at that time, between diagnosis and the advent of AIDS, leading, so they thought, to an inevitable death. Some didn’t make it to the window period, and my first friend, Andrew Todd, died at the end of 1986. I made it to the two year point…and was still very healthy. By then, the window for those diagnosed in 1985 had been expanded to five years, so the waiting game for many of us continued.  Up to 1990 is a very convoluted journey, and I don’t want to rehash history that has already been covered in many writings, and is really outside the parameters of this article. I decided to make this a useful period, and did a number of trials. It was better than just sitting around and waiting. This was a time when I made my one bad decision regarding my healthcare – I allowed my doctor to – after a najor ethical battle with her – to put me onto AZT! There has been much written about AZT, and its history as a drug…which was not exclusively formulated for use with HIV. I am not a conspiracy theorist, but my thinking on HIV has always been a bit radical, and I, along with others, gravitate to the thinking that HIV and AIDS – despite our use of them as co-joined conditions – are separate illnesses, and HIV doesn’t necessarily lead to AIDS, but AIDS as an independent condition, brought about by the deterioration of the immune system. 

So, I had a diagnosis of HIV, with no related conditions that would have rated a diagnosis of AIDS. Even with a CD4 count on the decline, I still had good health – which admittedly may have been a lot better if I wasn’t knocking myself around by chain-smoking, and chronic abuse of alcohol – until…I started AZT! Many of those still around from that time will acknowledge that the decline in their health status is directly parallel to starting AZT. It wasn’t nicknamed “human Rat-Sac”for nothing. It’s negative affects from then up until now are also well documented. Damaged nerves, liver & kidney problems, the leaching of calcium from bones, and other neurological problems can all be traced back to AZT usage. I wish I had stuck by my guns, and refused to use it! There is no evidence that it saved one single life. I wouldn’t have refused trestment with other drugs that came along shortly after – I didn’t have a suicide wish – but I have no doubt that if I had refused AZT, some ongoing problems I have now would not have happened. I have an undisguised hate of Big Pharma, and its tactics, and lack of ethics where it comes to flogging a drug, and how they went about flogging this incredibly toxic drug to a desperate and unsuspecting demographic is truly horrifying – more on this shortly.

So, dispite heavy smoking, alcohol abuse, long work hours, and a shit diet…I made it to 1990, and with my health still okay. I won’t say I was unscathed, as the relentless list of those who died over this time, with many more to come, was physically, mentally, and emotionally destructive. I am by nature – and experience – a stoic in the face of death. I accept the reality, and inevitability of it – but any sign of the existance of God in this obliteration was missing – no just, loving God would ever allow this! My conversion to Atheism was complete. However, the combination of all that was happening was starting to wear me down, and encountering on-the-job bullying by an Area Manager brought about my decision to leave the workforce in 1993, and go onto disability, and get a housing subsidy. It was a forgone conclusion back then that this was the road to take because – after all – none of us would survive for all that long. At this stage, under the most positive of thinking, I gave myself two more years. 

I actually got to mid-1996 before it all started to come undone. I have written about the circumstances surrounding all the events that happened at this stage, so won’t repeat them here, but will give you an intimate insight into my thinking on my situation when I was finally admitted to Prince Henry Hospital in June, 1996. Given that I was already close to death when admitted, with a plethora of conditions that really should have killed me earlier, and that I really thought I would never leave there any other way than via a wooden box gives a good indication of how serious things were. It was in Mark’s Pavilion there that my stoicism, my acceptance of reality, possibly should have been tested, but instead gave me a calmness, an acceptance of my own potential death that I had pondered about prior to this. I was chronically ill, I was tired and in some respects, if other factors hadn’t intervened, death just seemed like such a pleasant, restful reality, leaving all that was happening behind, joining all those that I had loved and lost over the last 10 years. It was an acceptance of death that I wasn’t expecting to be quite so complete, so easy, so without fear. 

But I picked my moment, didn’t I! Big changes were happening in the treatment of AIDS, and shortly after being admitted, not going down the road of death, that I expected to go down, I walked – well, taxied – out of Prince Henry. I exited that taxi into a world that was in no way prepared for the living dead of HIV. If I ever thought my battles were behind me, I could not have been more wrong. The next couple of years – a long period of recuperation – were intense. There was a seemingly neverending period of specialists, doctors, clinics, pharmacy, counselling, peer support groups, drug compliance groups, massive – and I mean massive – amounts of medication, side effects, dental work, anxiety and panic attacks, and drug trials. It was a time where one wanted to initiate great change in the direction of ones life  – with no one there to assist. Change had to be fought for, had to be forced. All these community groups gathering money and prestige, sitting in meetings and forums, listening to the likes of me yelling about what we needed…and just turning deaf ears! It was a frusteating period where everything was years behind where it needed to be, and if you wanted to get on with your life without being trapped in the system, you had to do it under your own steam! So I did!

Some volunterr work, some work in the community sector, a flowering writing career that demanded and exposed…when I eas “allowed” as one didn’t question the system – led to a brief period of full-time work – that didn’t help my health at all – then onto university & TAFE to experience at last that which gad been denied me in my youth. This led to an interesting period of experiences, from spending 12 years talking about the HIV experience through the Posituve Speakers Bureau, to 15 years writing for “Taljabout” magazine and various other publications, starting several businesses – the most recent of which was destroyed by the GFC, to where I am now – happy, balanced, and reasonably fulfilled.

However, the last few years haven’t been without its challenges, and my mental tenacity, combined with a fairly laud-back approach to life, have seen me get through things without any apparent negativity. I do health care on my own terms these days, because if one just relies on mrdico’s, one would rattle like a pill bottle. I want less pills, not more! About 15 years ago, I halved my HIV medications. I have been waiting for some red-faced, fuming doctor to lecture me about it (has no one realised how rarely I get scripts?) but no one ever has. In the interim, my blood readings get better and better, with CD4s on the rise, and an ongoing undetectable viral load. Okay, I no longer smoke – gave that up in ‘96, drink bugger all, have turned vegetarian, and exercise daily, but nothing else. Big Pharma be fucked! Your drug resistance tests – a farce! You just don’t want people on old drugs! Over-prescribing? You bet you do…big time! I wouldn’t trust you as far as ai could kick you! 

Have I mentioned my shit vision? Whoops…overlooked that. Blind in one eye thanks to CMV (also covered in articles on my blog), and almost blind in the other. The most major decision over the last couple of years? Having my blind eye removed voluntarily, and replaced with a prosthetic. Does it stop me getting around? Not fucking likely! I might be slow, but I get there! I have a white cane (laughingly called my whacking stick), but rarely use it. I walk the dogs, do the shopping, get to gym! It might be done with a slight feeling of nervousness, but it gets done.

I don’t hold any grudges. What has been, has been! In a way, I thank my father for the rough younger years. It gave me a set of survival tools that have served ne well – and still do – throughout my life. Maybe I was born in an auspicious astrological period, or maybe my natural survival instincts are genetic, endowing me with stoicism and mental tenacity! Whatever it is, it has seen me through nicely! Life is to be enjoyed, and despite the occasional downs, it should be lived to its fullest. Just step outside that square, and do it on your own terms!

Tim Alderman (©2017)

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Media Pig! From The Prophetic To The Mundane!

I have always believed in having a voice, and be it right, wrong or indifferent I think people should speak up, and one of the best ways to do that is through  either letter writing, or being included in written conversations on specific issues. There is a lot of stupidity, injustice, prejudice and misinformation going on around us, and it is always important to speak out against these issues.

I have been involving myself in letters and articles since the mid-70s, and have pretty well kept the full record of my involvement. As a way of posting something a bit different, and covering, where possible, the scenario’s that provoked the letters and articles, here is a rundown of my social involvements over time. Funny how circumstances provide the fodder for letters! In my early days, it was always about gay issues – but then you settle down with someone, move to the ‘burbs, and all of a sudden it’s about your local council, or the idiots who inflict their opinions on us through the local rags! Keeps life interesting!

Published in the Catholic Weekly around 1976. I was the store manager for Pellegrini & Co Pty Ltd, in York St, Sydney. A woman had eritren to the Catholic Weekly that Australia had no patron saints, which was inaccurate, as Our Lady Help Of Christians actually was. This is under my old name of Robert Phillips.

Also from around 1976, this article is an interview with the Catholic Weekly regarding the actual Pellegrini store itself. It was sround this time that we had moved the store from its original site in George St, Sydney (in Roma House) to York St.

Around 1978 I left Pellegrini to work for my local menswear store, P&S Michael, who were branching out from the store in Granville, to MacArthur Square in Campbelltown. However, they employed pressure salesmanship – my pet retail hate – so it was a short-lived relationship. I returned to Pellegrini a couple of months later. This is me, modeling clothes for an advert in the local paper.


“Campaign” November, 1981. I was working for Pellegrini in Melbourne, and had just come out. I lived in West Brunswick. The gay clone phenomena had just started, and because of its “macho” imagery, a lot of old queens were whinging about how it was selling out the gay community by adopting “straight” stereotypes. I got fed up with it. My only letter from my Melbourne days.


Two-in-one! Both the smsll photo of myself (right) and Barty Carter taken at the Midnight Shift, and the letter regarding ACON Safe Sex campaigns not hitting the mark would be from circa 1984. Both published probably in Sydney Star Observer.


Beresford Hotel 1985. Christmas function. Photographed with Tony Kelly (right), my partner at the time. More than likely in the Sydney Star Observer.

Article in “Outrage”, October 1985 by Adam Carr under his pseudonym Miles Walker. Adam had visited myself and my partner at the time, Damian, in our flat in Kellett Way, King’s Cross. He was on hus way to a street party. He decided to write a tongue-in-cheek piece about the visit. In the article, substitute Damian for Shane, and Tim for Tony. Notoriety comes in strange ways!

Star Observer circa 1985/86. A politician had made a rather stupid statement that gay men didn’t work in retail! Considering the retail sector relied heavily on gay staff, it just showed his general ignorance.

Star Observer Issue No.30, 20 June 1986. Cleo, my gutter drag persona, makes the front cover, along with Ruby Pollock (front right), and Andrew Carter. We had been to a Queens Birthday party at Geoff Smith & Steve Thompson’s home in Glebe. This photo was raken in The Oxford.

Cleo making it real in an advertising campaign for “Numbers” Bookshop in 1987. This was Cleo’s 1986 Sleaze Ball costume.

Green With Envy party, 31 August, 1986 at 38 Mona Rd, Darling Point. An annual party, put on by Sydney DJ Gareth Paull, who played regularly at The Oxford. A friend, Andrew Todd, asked me to go with him in drag, as he had never done drag before. Andrew had AIDS, and had spent most of the yesr in and out of hospital. He had a great night, and died on Boxing Day that year. I went wigless, and on the far right of this Star Observer photo.

Star Observer August 1987. Montage from The Oxford’s 5th birthday party on 23 August 1987. That is Cleo’s white wig on the top left corner.

Outrage Magazine 1988. Mardi Gras photo, taken at the Art Gallery of NSW. Darby Wilcox (left) and myself about to scatter the ashes (mixed with glitter) of Don Tickle, who had died from stomach cancer earlier that year. His ashes were scattered along the parade route.

Star Observer June 1988. Montage from ANZAC Day at The Oxford, 1987. Don & I, in army drag, at bottom of photo, right hand side.


“The Bulletin” August 1987. An interview in The Oxford regarding how we felt about living with HIV. Being still early days in the history of the pandemic, this all sounds a bit naive now.

Though labelled “Locker Room”, this was actually taken in the Midnight Shift circa 1997. Tony Kelly to the right.

Circa 1986. The premier, Neville Wran, commented on cinema’s banning condom advertising due to them being perceived as not “family friendly”. Nothing like sticking your head in the sand, as far as I was concerned. Evidently I was allowed to see it on television, but not in the cinema?


A series of photographs taken by the Sydney Star Observer circa 1987. We had a Nuns, Priests & Prostitutes party to celebrate my flatmates birthday. The patty was an afternoon affair held at our apartment in Bourke St, Darlinghurst. A group of us went out to the Oxford Hotel after the patty, where these were taken.

My backside, in leather chaps & thong, makes an appearance in – of all things – a lesbian magazine – LOTL (Lesbians On The Loose), at a Sleaze Ball. Also circa 1987.

Outrage No.63, August 1988. Someone from Adelaide was laying shit on Mardi Gras…obviously decided not to have a great time…and succeeded! The tone of the letter will give you some indication of his gripes.

Poster for “Dancing Through the Decade”, New Years Eve 1989, at the Wentworth Function Centre, University of Sydney. Put on by the Bobby Goldsmith Foundation (BGF), DJs were Rob Davis & myself.

2 articles from local papers (names unknown) who reported on the opening party for “Expectations”. Expectations was a fetish store I managed for a short while, situated on the second floor of 159 Oxford St, Darlinghurst. Owned by Paul Jones, as was Numbers Bookshop, and the Den Club. In the first article I am in the top right photo, and in the second article the left side photo.

All I can remember about this photo was that it was taken in the Midnight Shift, and probably sometime between 1990-1993. I think I was in it due to my DJ work. It was published in the Star Observer.

Star Observer May 1990? (Date very difficult to read). Oxford DJ roster for what would seem to be Mardi Gras week, seeing as a Recovery Party is listed.


The Star Observer, 5 October 1990. The Oxford Hotel DJ Roster. I was a resident DJ at The Oxford from 1990-1996. This is probably the first roster I was on.

Star Observer, January 1991. Australia Day week DJ roster at The Oxford.

“Wentworth Courier” 22 September 1994. As usual, Oxford St as a shopping strip is going to hell on a hot rail, and everyone just seems to argue about what needs doing. The need for a retail plan for Oxford St should have been a council priority.

Star Observer, 31 January 1995. Myself & Marcus Craig (right) at the opening of his mixed-media gallery exhibition “Odyssey”. The air brush painting in the oicture was donated to the Luncheon Club.

Capital Q – 6 April 1995. People having a bash at HIV people because they are not relying more on alternative therapies.

The Daily Telegraph, 6 February 1997. Having attended the opening of a gorilla exhibit at Taronga Park zoo, all I could really see everywhere was McDonald’s – the exhibits sponsor – advertising. Way over the top!

Sun Herald, 16 March 1997. Someone whinging about forms of address to customers in retail stores.

Positive Living, June 1997. My response to an article they ran on CMV Retinitis, something I was well & truly knowledgeable about.

Capital Q 1997. My one attempt to jeet a potential friend or partner through the gay classifieds. I opted for the fully out there, warts and all approach. All those that I met were either serial classifieds users, or just plain nut cases. I met Michael, from Rose Bay, who I had a brief “thing” with just proor to meeting David. I still have the letters from guys who responded…more than I expected.

Star Observer January 1998. Dawn O’Donnell’s 70th Birthday Party at Paddington Town Hall. My self & Phillip Metcalf attended as representatives of PLWHA. Photo is not clear as enlarged from a very tiny shot. I am in the rear, far tight.

Capital Q 23 January 1998. A letter in support of my friend Marcus Craig, regarding the closure o a gym in the Pride Centre.

Capital Q 30 January 1997. The response of the gym owner to my and amarcus’s letter regarding its closure.

Wentworth Courier 1997. My gripes about life in Bondi! A true nightmare of a place to live in, esprcially in regards to transport & infrastructure.

Star Observer 30 October 1997. A letter expressing my thanks HIV services.


Star Observer 1998 – Myself (left) and David st the 1998 Mardi Gras Party. We had been in the parade, and are photographed here in the PLWHA Time-Out Room…a dpace set aside for guts with HIV to have a break during the party.

Star Observer 1998. Mardi Gras Fair Day 1998, probably the last I attended. I am to the far left of the photo in 3/4 shorts.

“Talkabout” July 1998. Alex Crystal had sent a letter to the editor critisizing an article I had written. Not only had this person not ever been as seriously ill as I had been in 1996, he had no empathy for the long recovery process, the psychological implications of surviving AIDS, nor coping with ongoing life with disabilities.

Probably Star Observer 1998. Mardi Grad parade entry for PLWHA – Dick Van Dykes on Bikes.
Sydney Morning Herald, 22 October 1998. A letter responding to the mass closures of banks – a trend that was soon to reverse.

“Talkabout” No.91, Octoger 1998. A esponse to a letter critisizing my friend Marcus Craig for representing gay men with pisitive body images in his art work. Some people need to get a life!.

Sydney Morning Herald 10 November 1998. A letter regarding the fifficulties of obtaining work after serious illness, and when you are older.
“Net” Magazine, April 1999.,The mire everyday aspects of life, and dealing with technology.

Sydney Star Observer 8 July 1999. A letter of thanks to The Oxford for awarding me a special prize for having entries in the BGF Bake-Off since its instigation.

Sydney Star Observer 3 August 2000. The Oxford had undergone yet ANOTHER renovation, but this time a whole lot of poker machines had been added. Holding a charity auction in a place where money was being fed into machines was a bit ironic.

Good Weekend Magazine, 29 October 2000. A letter regarding an article they did on Stephen King, after his quite serious accident.

Wentworth Courier, February 2001. Letter regarding back-packers dumping inloved furniture etc on the footpath when they move on.

“Internet” Magazine, Issue 69, July 2002. Yet more mundane technology problems.

“Delicious” Magazine, February 2002. A great food magazine, if you enjoyed a LOT of tunning around to grt all the ingredients together for a recipe.


“DNA” Magazine, No.26, March 2002. A response to an article regarding gays, and religiiys dogma.

Sydney Star Observer 27 June 2002. Photographed at Arq with my winning entry in the Condiments & Preserves category, at the annual BGF Bake-Off. in 2002.

“DNA” Magazine, March 2003. A letter regarding an article in their Februarybissue regarding workplace bullying. The very start of the letter is missing.

“Sunday Life” Magazine, December 2003. My response to a fery touching article on coming out as gay to ones parents.

“DNA” Magazine, February 2004. A tongue-in-cheek lettet regarding their very sexy photo shoots.

Sydney Star Observer, 28 April 2005. My having yet ANOTHER dig at the Student Services Union at UTS. I had bern at loggerheads with them for years over compulsory inion fees. Unfortunately, my original oetter regarding this is missing.

Daily Telegraph, 28 April 2005. The impossibility of getting work, even part-time, as you get older.

Daily Telegraph, 1 June 2005. Response to a ketter regarding the absence of small birds in our gardens.


Sydney Star Observer, 5 October 2006. David had, in a drunken moment at that years BGF Bake-Off, won an auction bid on a cake (bloody awful) and 2 Sleaze Ball tickets. We attended the party, and had an absolute ball, not at least helped along by some Ecstacy.


“The Glebe” 12 July, 2007. I take issue with people who are just unpleasant individuals. No wonder the dogs nipped him!

“The Glebe” April 17, 2007. After some demolition work in New Canterbury Rd, Dulwich Hill, some old painted shop signage appeared on the side of a remaining huilding, which had originally been hidden. I contacted the local paper, and they did a piece about it. The signage can be vaguely seen in the background.

“The Glebe” 1 May, 2007. My involvement in a local protest about removing a small park at the topnof Marrickville Rd that had historical significance as a tram turning-circle. I’m in the background, dark glasses & cap to right of picture. I’m holding Benji, my dog.

“Good Weekend” Magazine, 18 August 2007. A letter regarding the joys of childhood, which won me “Letter of the Week”, and the prize attached ton it – a weekend for 2 at Pepper’s Convent, in the Hunter Valley.

“Inner West Courier” 16 March, 2010. Local Treens rep is trying to thwart a much-needed recamp and extension to Marrickville Metro, and has obviously never shopped in our area.

“DNA” Magazine No.121, 2010. In praise of a redhead make-over! Yum!

“DNA” Magazine No.124, 2010. A dig at a VERY boring Mardi Gras parade.

Inner West Courier, 2 November 2010. A whinge about cuts to mowing services that sre leaving yhe areas looking like jungles.


Sydney Star Observer, 23 March, 2011. A dig at a columnist who accused fit, healthy older guys of being posers.
A note to the Sydney Mirning Heralds “Column 8” about something locally amusing.

Rumination of the Day (2nd December 2016)

WORLD AIDS DAY

It’s the day after WAD, and as usual, I’m ruminating! For many years now I have been looking at how I now view HIV/AIDS – through the lense of objectivity. Emotion only muddles the issue, and history has a trail of misinformation, mixed objectives, venom and misunderstanding! 

Even recently I have encountered those who, for reasons known only to themselves, have never been able to move on! The hate is still alive, the dragons still circling. I could be one of these, who still feel that the experiences of the 80s & 90s are still alive, an uncompromising hard line that leaves me stranded in a time that has passed by. Fuck knows there is a lot in my past that I have never fully moved on from – family business that could, at any time in the past, have left me sitting in a gutter, needle dangling…or in a bar, in an alcoholic stupor – and fuck knows I flew very close to the latter at one stage! More so than many, I have reason enough to be bitter, to be a victim. My experience with AIDS has left me close to blind, and there are many who would agree that that is reason enough. But, as in my latter teens, with full knowledge of my families dysfunctionality, living with a solitary knowledge of my younger brothers horrendous death, of violence and unspoken secrets, of my being gay, I made a quiet vow to myself that I was not going to let it get the better of me, to smother me, to stop me being who I would be! So to with AIDS – my survival alone was an unexpected surprise – and blindness! To buckke under, to attribute blame, to become a victim, to allow it to hold me back, swallow me up, would be saying…I do not have the strength for this, the self-empowerment whereby I would become someone who even I didn’t recognise! 

To move on, one has to acknowledge that the past is just that – the past! Yes, what happened was dreadful – the hatred, the discrimination, the accusations, the blame, the misinformation, the segregation, the fear! We need to acknowledge – 40 years along now – that we were all scared shitless. Straight, gay, male, female, religious, non-religious, politicians, doctors, journalists, activists…ad infinitum…were all scared. Perhaps not since the scourges of the Black Death have we encountered something we all knew absolutely nothing about – not even those who, perhaps, should have known! And what does human nature do when it is faced with an unknown that can just kill at will, shows no mercy, is no respecter of life at all – it looks for scapegoats, attributes blame, hands out punishment! It just so happens that the scapegoat was the gay community, and given what was happening at that time, it perhaps should not have been surprising. Minority groups have a long history of misunderstanding, stigma, discrimination, hate and ignominy! I am not defending the direction it took…I’m not going to shoot myself in the foot…but the point is, it was quite a while back now, and as awful and relentless as it was, as a community we not only survived it, but we fought back with the tools to hand – knowledge, facts, patience and dogged determination. 

One can’t deny that some of the negatives from that era live on. There is still prejudice, discrimination, stigma and musunderstanding! But it is also true that we don’t have it on our own – just ask any person with Down Syndrome. To hang onto the hate, and all the other negatives from that period in our history is to hold no one back but yourself! You know, we all walked in the footsteps of those that suffered, those that died! But by walking in their footsteps, when their footsteps stopped…ours continued on! To live with the negativity is to deny that a lot of good, positive, beautiful things were still going on. The community still lived, loved, and laughed. We supported each other, we were staunch in the face of adversity, we celebrated the lives of those who died with a gusto that was ever born of love. If ever there was a time I was proud to be a member of the gay community, it was through the 20 years of that horror!

Okay, it damaged me! As a fanatical reader & writer, it chose to attack perhaps the most important assets I had – my eyes! But it also presented me with new opportunities, new roads to venture down, new challenges to tackle. I can’t carty the hate because, despite everything, my life has not stopped, nor my humour, my inquisitiveness, my talents, nor my ability to just get on with it. I no longer go to candlelight vigils, or other AIDS memorials. It is too raw, too emotion charged, to ready to rip open healed wounds. I don’t forget – those who died are too entrenched in my memories for that – but now I choose to remember in more gentle ways. What every single one of my dead friends would have wanted is for me to get on with my life. Once a year their ghosts are going to waft around, to cajole me to tears, to invoke memories of wonderful times that will stay with me forever. 

But I’ll wake up tomorrow, and the ghosts will be gone. And just as they wanted, my life goes on. Who am I to argue with them!

Tim Alderman (2016)

Daily (Or When The Mood Tales Me) Gripe: Has HIV Inc. Run Out of Steam!

This year marks, for me, 34 years of living with HIV/AIDS…though now it is just HIV. I consider it a landmark, as back in 1996 I was admitted to Prince Henry hospital with chronic CMV retinitis, chronic candida, chronic anaemia, wasting syndrome (48 kg and going down), 10 CD 4 cells, and no immune system, and was not supposed to leave…at least not under my own steam. That  I did was only due to advances in medications at that particular time, very aggressive treatment, some great doctors and nurses –  and a lot of will power. I don’t give a fuck how negative many HIV+ guys are about life with HIV. For me, this was the great singular event of my life, a pivotal point that resulted in life-altering decisions, a mental overhaul, and the knowledge that there was a hell of a lot more to life THAN HIV. It altered the course of my life, and for better or worse I have never looked back. 

I was a speaker for the Positive Speakers Bureau for 12 years before realising that when you continually tell a story you start doing it by rote. Time to get out before it became totally meaningless. I have also written for “Talkabout” magazine (the flag ship publication of Positive Life NSW – formally PLWHA NSW Inc) for 15 years, both as a features writer and a columnist. As a writer I see my role to be not just to inform people, but to provoke debate, at times to be opinionated, to raise questions, to address abuses and unfairness and to be, when required, controversial. Unfortunately, my time with “Talkabout” taught me that to get published in a HIV publication you need to walk the safe road. To be controversial is to be tolling your own death knell. Mind you, this censorship has nothing to do with the editors who, in my experience, have been nothing but supportive. Community Health and a certain AIDS council provide funding to the magazine, so to poke your nose into sensitive areas will ensure your censure and non-publication. As a HIV+ person writing about HIV issues I have always found my hands tied. I have written two extremely controversial articles on HIV issues over the years. One, on Options Employment Services using HIV clients as a free work force, in the guise of “work experience”, was so watered down by the editor after threats of suing PLWHA, the editor and myself (I truly wish they had) that by the time of publication it was a mere shadow of its original fiery tirade…despite the fact that I had evidence of this going on. The manager of “Options”even took me aside and “suggested” that I quieten down my opinions as they were providing a service to the HIV community. Shortly after this fiasco, they went broke and disappeared. The second article was amongst the best pieces I have ever written, and covered the controversial area of bug-chasing (HIV- guys who deliberately have unprotected sex with HIV+ guys in the hope of contracting HIV). The magazines working group deemed that by writing about bug-chasing I may have been promoting it amongst a certain sector of the community. Considering that the practice is well documented, is acknowledged and exists, I failed to see how being informative about it was in any way promoting it…oh shit! I forgot that community health and certain HIV organisations wanted to keep their heads buried in the sand about such unpleasant issues…and they held the purse-strings. Censorship is alive and well within the HIV community and always has been. Want to tell the truth about what is going on or want to expose something? Not on their watch!

But despite this I continue to write, though I keep it to the more nondescript these days, and publish them on my blog. I have around 100 followers – not bad for an unknown.. I do enjoy being published! When I moved to Brisbane I began phasing out my writing for “Talkabout” (which after 15 years of being published in pretty well every issue, has gone unacknowledged by the organisation itself, though not by the editors), and had started writing for QPP “Alive”, the magazine of Queensland Positive People. Same story, different place as far as funding goes, I’m afraid. Nothing controversial would be coming out of there either. Nor did I get paid anymore – one advantage of “Talkabout”.

34 years ago at the start of the HIV shit fight, people never questioned anything about treatments, definitions, philosophies, or courses-of-action. We were in crisis mode and anything was better than nothing. We let a lot happen that in more sane, accountable times would never have been allowed to happen. This far down the line it is time to start asking questions, time to demand investigations and redefinition into many aspects of treatment, time to look back at some of the historical record and say “we were wrong”, and set the record straight. I no longer allow my doctor, or the HIV establishment, nor the drug companiesi in particular, to dictate my path to positive health outcomes. I follow my own path, which is dictated to by knowledge and experience. 12 years ago I made a decision to halve my daily medications, and dose myself once a day only. Considering the negative impacts of huge amounts of HIV medication on the body I decided to take a risk. Well, this far down the line my health has never been better (though diet and exercise also contribute to that), my viral load has remained at undetectable, and not only has my CD4 count remained stable, it has in fact risen substantially. Considering the recent emphasis on drug regime “compliance”, and considering my own circumstances, I am forced to ask – controversially, naturally – if the compliance issue is being driven by HIV specialists, or by the drug companies who stand to make a fortune out of HIV drugs. In the same way, I question resistance testing. I will leave that question in the air for you to mull over and answer for yourself. This is a personal opinion, and one I am entitled to.

I started “withdrawing” from the HIV community – in a generalised way – a number of years ago. It was starting to irk me, and was bogged down in academia, and a narrow mind-set. As stated earlier, the fact that something comes from the upper echelons of HIV Inc, doesn’t necessarily mean I believe or accept it. You tend to get a reputation for being obstreperous when you adopt this philosophy, and question everything that is thrown your way. There is little doubt that anyone from HIV Inc…or its sycophants (those who blindly follow and agree with every word from the mouth of) who reads this opinion piece will accuse me of negativity, and not being supportive or a believer in the end of HIV. This is not correct. It is a big step from negativity to a position of voicing reality!

I have written on several occasions about my distrust of drug companies…though it is an area that many are now accepting. These multi-billion dollar corporations are as corrupt as – despite much denial from health practitioners, community groups, and the drug companies themselves. As long as there are stakeholders salivating at the stock price, this will never change. That we are over-dosed – a now acknowledged stand – is all to thebenefit  of the drug companies, who are, at the end of the day, just research, manufacturing & distribution companies, with no stakes in public health other than shoveling their massively over-priced medications down our gullible throats. Now that community pharmacies are handling HIV meds, I went to my local, and was probably the first to get my meds through them. They nearly had conniptions when they saw the price of them! Considering how many years some of these drugs gave been on the market for, the price has never come down. HIV was a regular little money spinner for the drug companies!

Our larger HIV community groups have also been very good at wasting money over the years, and still continue to. I have seen so many ineffective campaigns churned out by them over the years that I’ve lost track. Nothing like churning out the same messages year after year, targeting the converted, and the blasé. When you are given advertising targets, you…well…spend it! The community groups themselves will tell you that no campaign is launched without the blessings of a focus group. What they don’t tell you is that it is pretty well a hard core group of people who attend these focys groups and forums, so in actual fact it is the same people – irrespective of the organisation arranging things – castings their blessings on every campaign that is tested. No wonder they all look the same!

And don’t ever think you can rely on the same groups to be able to assist and support you as needs change, despite however much notice is given of situations changing. By the time they catch up with what is happening, hundreds will have fallen through the cracks, and others will have just given up, and end up fighting their own battles. At the time of the introduction of the then-named combination therapies, there were two major issues raised. One was assisting those who were resurrected from a porential death sentence, being cast back into a world ill-prepared for them, or their needs. The second issue was handling the massive volume of drugs being rammed down the throats of basically every HIV+ people at that time. At the height of new treatment regimes, I was shoveling 358 pills per week down my throat – antivirals, prophylactics,  and pills for side-effects. Wasn’t that fun, with the added value of time & dietary restrictions! The only group committed to the problem of compliance was “Caleo”, which had its funding withdrawn after 2 years – just when it was needed. HIV Inc. prioritising, .as usual. Bet there was plenty of money for yet ANOTHER wasted campaign on condom use! While they were throwing yet more money away, many like ne were negotiating unprotected sex with like-minded – usually other HIV+ – guys. Money would have been better spent advusing guys on this at that time, not years down the line…then treating it like it was a great revelation from the powers that be.

Likewise when I worked for the Positively Working Project. Sonia Lawless & myself spent 12 months putting together a needs assessment for guys returning to the workforce after being returned to reasonable health via HAART. Nothing truly innovative was actioned after this very important report was released. Guys were basically given no assistance at all to help in the transition from DSP to a form of “work” that was beneficial to them in the long run. I was a speaker for the “Reconstruction” program for quite some time, and the most obvious negative from these programs was that many guys got recycled from one program into another. How many times can you be shown how to write a resume, or how to approach an intervuew before it becomes a lost cause? Considering the recycle rate, one would have thought that it clicked with someone that the approach was wrong, that maybe the guys were looking for inspiration and support to direct their lives in new directions – one of the key outcomes of the Positively Working report was that guys did not want to return to their old professions, but wanted to go off in new directions. No one listened!

HIV Inc. has a bad habit of being dogmatic, of only expressing the narrow, popularist view! You only have to go to any HIV web site, or forum to see how prolific this attitude is. If you want help and support, then ensure you walk in the safe zone, looking neither left nor right. Don’t problem solve yourself, don’t question the status quo! Over the 23 years I have been on DSP, I have – perhaps to my detriment – never used many of the services and financial assistance available. I hate the victim mentality, and have always liked my independence and financial freedom, and have always managed to get by. If I truly needed the help, I would have gone for it. I always remember my anger at guys who used to attend the Luncheon Club. They would be given cheap meals, and access to cheap food through the Larder – yet after the lunch, you would see them in yhe pub drinking till all hours, and all smoking! Seems they weren’t willing to sacrifice anything at all – the more you gave, the more they took. I always thought it was wrong, that their priorities were skewed. I still think that. Add in bill assistance from BGF, and housing subsidies…and these guys had it a lot better than many pensioners in the general community.

Anyway, times moved on. Now we have PrEP, and “Ending HIV”! According to HIV Inc, implementing the former will create the latter. According to a comment on a recent post placed on a FB HIV group page, during a discussion on PrEP, “if you have raw sex and take PrEP, no more HIV transmission, so no more HIV”. As simple as that! I was so angry at the naivety of it all Inever  returned to the post. The “Ending HIV” campaign is just ANOTHER example of HIV Inc. wasting precious money. There are several big problems here. One is the emphasis on sexual practice, and the assumption that because testing kits, and PrEP are available, that everyone is going to use them…another assumption being that everyone prepares for sex. Yeah, we all know about that! The only realistic fact I’ve read so far is that guys are sick of using condoms – are, in fact, not using them! I could have told them this 20 years ago!  The general discussion seems to be around eradicating HIV in Australia (no man is an island…) but logic decrees that is never going to happen. We have to account for the tyranny of distance often making both kits and PrEP difficult to obtain, people who are heavy drug users, bisexuality, guys who want to remain anonymous, cultural differences, worldwide travel, religious beliefs – these are just some of the obstacles. And as one guy pointed out, why should we be exposing perfectly healthy guys to the toxic effects of HIV drugs! It’s a good point. Most of us who take the drugs regularly are concerned about the long term side effects of same. I wouldn’t be taking them if I didn’t have to! It was also pointed out that new classes and alternate antibiotics are currently geing tested, and that these, along with PrEP will not only eliminate HIV, but STI’s in general. Evidently we are heading towards the perfect world. My immediate thought was…oh, new antibiotics…so, how long until STI’s make us resistant to these as well! Worth thinking about. This seems to be all HIV is about now – at least that’s all I seem to read about, and encounter through HIV groups. There is a lot of philosophising around both issues – good luck with that!

There was a time about 10 years ago when I thought that a changing of the guard from the older to the younger generation would bring about new thinking and ideas. It may have worked, but the old guard hovered in the background, never really wanting to relinquish their hold. The new guard just became copies of the old guard, and nothing seems to have progressed. There is a certain degree of internalised discrimination towards some sectors of the HIV community, and that hasn’t helped things. Also a certain degreebof self-stigmatisation, and being a victim amongst a group of guys fairly recently converted who will, in all probability, never get ill. A current trend to outing their HIV status to employers – who rarely receive the news gratefully – then leads to a string of posts on what to do. I don’t quite get why there is a need to advertise you status to all and sundry. Even in pre-HIV days, if you contracted an STI, the only people you informed were sexual partners. In my 34 years of living with HIV, I have only ever informed one company of my status – and that was for OH&S reasons. It’s not like the 80s & 90s when people with AIDS looked very obviously ill, and there was no hiding it. That doesn’t happen anymore. Maybe I’m just old-fashioned, and don’t believe in making a rod for my own back. I acknowledge that it is their lives to do with as they see fit, but common sense should decree that if you are going to travel that road, you should ask yourself – what can go wrong here! And if the worstcase  scenario presents, are you prepared to deal with the backlash. 

So, right here and now, I’m an ageing HIV+ man. I see a lot of HIV funding been spent on a lot of things – but nothing that is of any use to me! I don’t see the funding assisting with an actual cure, or giving me a place to go should my current pathway be diverted! As someone with a disability brought about by AIDS, no one has ever asked me…what would you really like? What can we do to assist and support you? There was much to-do about a Long-Term Survivors Day earlier this year. I remember thinking at the time – Why? Nothing will come out of it! As usual, we will be left to fight our own battles! It was a nice bit of tokenism, I guess. We like to think that we are thought about occasionally, even as just a passing thought. You see, we are seen as HIV past, not as HIV present. No one really understands us, as few walk in our shoes. It’s a lonely path at times, and frequently alienating. But we have defied the odds, and will probably continue to. HIV Inc. doesn’t have us in their sights any more…but then…

Maybe that’s just how we want it. It’s a no-bullshit world for most of us!

Tim Alderman (C) 2016

PS The following article appeared in the Sydney Morning Herald on the 22nd May 2017. It would seem to discount both using PrEP, and Ending HIV! http://www.smh.com.au/national/health/melbourne-man-tests-positive-to-hiv-while-taking-preventative-drug-20170522-gwaavh.html 

Daily (Or When the Mood Takes Me) Gripe: After More Than 30 Years of HIV Knowledge and Experience We STILL Have Stigma!

Please view this video first

https://m.youtube.com/watch?utm_source=GayAussie.co&v=UV5uv0589Ec&utm_term=HIV+Queensland&utm_medium=ga-social-ads&utm_campaign=HIV+FQ+GAY+AUSSIE

I can’t believe stigmatisation and internalised homophobia like this still goes on, and we need to have a dialogue about it! However, my own experiences as a 61 year-old with HIV, and a disability who used (note tense) gay dating sites tells me we do! We no longer have the shared experience of the 80s & 90s, so ignorance keeps on rearing it’s ugly head! Both the gay and HIV communities should be ashamed of themselves. The lessons of the past have quickly been forgotten!

This year I “celebrate” 33 years of being HIV+ (yeah, cheers, thanks). It doesn’t take a brilliant mathematician to work out the percentages – I have spent over half my life with this dubious honour. This is not braggodocio, me looking for a chest to pin a medal on, or leaning my head forward for a pat. This has also included a brush with AIDS – not to be confused with HIV, despite the still incorrectly used AIDS misnomer to describe someone with HIV. For those who think that just because I am walking around it has been an easy road, or similarly think that now, thanks to drugs, my life is a dream…think again. Every single day is a challenge, not so much something I dwell on daily, but certainly live daily.

Over those years I have seen stigma and discrimination of pretty well every variety – reluctance of governments to fund in the early day; religious intolerance, including a call for segregation and for internment camps; hospital staff refusing service to those with HIV; the incident with young Eve van Grafhorst (if you don’t know of it, look it up); social stigma; advertising scare campaigns; HIV denialists (while thousands drop dead around them); the deathly silence of many world leaders (mainly US presidents); ignorance and misinformation on every level. Personally, I have experienced workplace discrimination and bullying both as a gay and a HIV+ man. As the mother in the above video states, if this was cancer you would receive nothing but sympathy and support. But as soon as you say HIV, people back off, and the implication is that you are dirty, a sexual deviant. After all this time, and the misnomer that it is a “gay”disease with its prominent creep into the straight world at about the same time – can’t have them as scapegoats, can we! – one would have thought that all the misconceptions about HIV would have been pretty well eliminated. Well, I’m afraid not!

Even now, on Gay dating sites you eill encounter many instances of people adding labels like “clean” to both their profiles, and sexualpartner  requests! The insinuation is that if you have HIV, uou are domehow “unclean” or “dirty” – and it has nothing to do with me having a shower! Ironically, the profiles making this request don’t seem to think that the same language applies to them. Let’s face it, if I don’t disclose my status, you are going to be none the wiser…no I, for that matter! I have to take your word for it as much as you have to take mine! You haven’t really made any sort of a point, have you!

But apart from the degrading insult, it shows a huge gap in the education of the person posting – almost criminal, if they are Gay! For at keast the last decade or more, it has been pretty well acknowledged that if you are HIV, taking meds, and have an undetectable viral load, you are not going tomoass HIV on. The latest research http://mobile.aidsmap.com/No-one-with-an-undetectable-viral-load-gay-or-heterosexual-transmits-HIV-in-first-two-years-of-PARTNER-study/page/2832748 indicates that after two years into yhe latest study, chances of transmission are, to date, zero!

I hate condoms, and haven’t worn one for decades. Back in my pick- up days, I deliberately seeked other HIV+ guys, as within that circle unprotected sex was a norm, of more recent times I have used sites like BBRT – a barebacking site – for sex. At least on this site there is no foubt about what you get. If I had to ge honest – and the same would apply to the HIVphobes from the other sites – you have a getter chance of picking up a garden-variety STD than HIV…something that is conveniently overlooked! 

Perhaps rather than education – which to-date has got us absolutely nowhere – people just heed to get some manners…and a life!

Tim Alderman (C) 2015

  

Living with HIV – 1987 Style.

This is an interview on “life” with HIV that I did back in 1987 with “The Bulletin”. When I read it now, I cringe, as it seems so naive. The reporter, whose name I can’t remember now, knew absolutely nothing about HIV…or the gay lifestyle! As you can tell, his grasp of it was no better after talking to us, and editorial license is in full bloom, with distortions, misrepresentations, and fact twisting the order-of-the-day. However, the thinking of the time is evident if you read between the lines. At two years after official testing was introduced, none of us really expected to survive. It was party, party, party! At this time, I had already lost several friends. It was very scary times. Just part of my lived history now.
   
   
Tim Alderman (C) 2015

An Outsiders Overview of the HIV “Industry”

This year marks, for me, 33 years of living with HIV/AIDS…though now it is just HIV. I consider it a landmark, as back in 1996 I was admitted to Prince Henry hospital with chronic CMV retinitis, chronic candida, chronic anaemia, wasting syndrome (48 kg and going down), 10 CD 4 cells, and no immune system, and was not supposed to leave…at least not under my own steam. I did, thanks to advances in medications at that time, very aggressive treatment and a lot of will power. I don’t give a fuck how negative many HIV+ guys are about life with HIV. For me, this was the great singular event of my life, a pivotal point that resulted in life-altering decisions, a mental overhaul, and the knowledge that there was a hell of a lot more to life than HIV. It altered the course of my life, and for better or worse I have never looked back.

I was a speaker for the Positive Speakers Bureau for 12 years before realising that when you continually tell a story you start doing it by rote. The time came to opt out before it becomes totally meaningless. I have also written for “Talkabout” magazine (the flag ship publication of Positive Life NSW – formally PLWHA NSW Inc) for 15 years, as a features writer and a columnist. I also spent many years on the Publications Working Group. As a writer I see my role as not only to inform people, but to provoke debate, at times to be opinionated, to raise questions, to address abuses and unfairness and to be, when required, controversial. Unfortunately, my time with “Talkabout” taught me that to get published in a HIV publication you need to walk the safe road. To be controversial is to be tolling your own death knell. Mind you, this censorship has nothing to do with the editors who, in my experience, have been nothing but supportive. Community Health and a certain AIDS council provide funding to the magazine, so to poke your nose into sensitive areas will ensure your censure and non-publication.

As a HIV+ person writing about HIV issues I have always found my hands tied. I have written two extremely controversial articles on HIV Issues over the years. One, on Options Employment Services using HIV clients as a free work force in the guise of “work experience” was so watered down after threats of suing PLWHA, the editor and myself (I truly wish they had) that by the time of publication was a mere shadow of its original fiery tirade…despite the fact that I had evidence of this going on.The manager even took me aside and “suggested” that I quieten down my opinions as they were providing a service to the HIV community. Shortly after, they went broke and disappeared. The second article was amongst the best pieces I have ever written, and covered the controversial area of bug-chasing (HIV- guys who deliberately have unprotected sex with HIV+ guys in the hope of contracting HIV). The magazines working group deemed that by writing about bug-chasing I may have been promoting it amongst a certain sector of the community. Considering that the practice is well documented, is acknowledged and exists I failed to see how being informative about it was in any way promoting it…oh shit! I forgot that community health and certain HIV organisations wanted to keep their heads buried in the sand about the issue…and they held the purse-strings. Censorship is alive and well within the HIV community and always has been. Want to tell the truth about what is going on or want to expose something? Not on their watch!

But despite this I continue to write, though I keep it to the more nondescript these days. I do enjoy being published! Since moving to Brisbane I have been phasing out my writing for “Talkabout” (which after 15 years of being published in pretty well every issue, has gone unacknowledged by the organisation itself, though not by the editors), and have started writing for QPP “Alive”, the magazine of Queensland Positive People. Same story, different place as far as funding goes, I’m afraid. Nothing controversial will be coming out of here either.

33 years ago at the start of the HIV shit fight, people never questioned anything about treatments, definitions, philosophies, or courses-of-action. We were in crisis mode and anything was better than nothing. We let a lot happen that in more sane times, in more accountable times, would never have been allowed to happen. This far down the line it is time to start asking questions, time to demand investigations and redefinition into many aspects of treatment, time to look back at some of the historical record and say “we were wrong”, and set the record straight. I no longer allow my doctor, or the HIV establishment, or the drug companies to dictate my path to health for me. I follow my own path, which is dictated to by knowledge and experience. 11 years ago I made a decision to halve my daily medications, and dose myself once a day only. Considering the negative impacts of huge amounts of HIV medication on the body I decided to take a risk. Well, this far down the line my health has never been better (though diet and exercise also contribute to that), my viral load has remained at undetectable, and not only has my CD4 count remained stable, it has in fact risen considerably. In fact, on my blood tests all other readings – except CD4/CD8 – are within range. Considering the recent emphasis on drug regime “compliance”, and considering my own circumstances, I am forced to ask – controversially, naturally – if the compliance issue is being driven by HIV specialists, or by the drug companies who stand to make a fortune out of HIV drugs. I will leave that question in the air for you to mull over and answer for yourself. This is a personal opinion, and one I am entitled to.

With the release of the brilliant “Dallas Buyers Club” the truth about AZT is finally out there. Pressured by my doctor to go on it in the latter part of the 80s, it is the one decision of my HIV care that I regret. I had read the report from the “Concorde” study in France, I knew it was described as “Human Ratsac”, yet I still finally gave in, and witnessed the immediate decline of my health as it bashed my immune system into submission. Needless to say, the long-term affects are disabling, and were not worth the risk. I still hear those who work in the HIV “Industry” – as indeed it was and still is – banging on about how it kept the wolf from the door – it didn’t! It poisoned and destroyed our immune systems, and left us vulnerable to opportunistic infection! It effectively killed many of us. As a drug to assist with maintaining CD4 counts it was a total and complete failure! And I am not the only one to say so! Ask any one who survived AIDS their opinion on AZT! Minor control of HIV did not start AZT situation. How the FDA in America handled the AZT situation and allowed wed the drug companies to dictate treatment options, block other drugs put out by rival companies, and chose to ignore or acknowledge research from overseas was a disgrace.

Even now in 2014 ignorance lives on. I continually hear, read and see HIV being described as AIDS! It is NOT AIDS – it Is HIV or HIV+! For fuck sake get your facts right! HIV is a viral infection, and AIDS are as the initials infer – Acquired IMMUNE Deficiency Syndrome! They are infections contracted by a breakdown of the immune system! The two do not necessarily go hand in hand, and you can have one without having the other. People undergoing aggressive cancer treatments which knock the immune system around are left vulnerable to the same infections triggered by AIDS in the plague years. Drug addicts also.

There are – and I am not being unkind nor ungrateful – those who have worked in the HIV Industry for too long. They are burnt out, and out of touch. If you only wander in HIV circles, you will only know that singular perspective. These people are indoctrinated, lacking in vision, and single-minded in their approaches to HIV and its management. They are blinkered, and only ever spiel forth statistics and the same information that we have heard for the last 30-odd years. They seem incapable of acknowledging different perspectives, new ideas, or revisiting and re-evaluating the old philosophies and education. Without an insurgence of new blood, HIV is in danger of stagnating and just at a dead end. Their current publicity of “Ending HIV” is a fantasy, and they know it. As long as HIV is in Africa, and in countries like Russia and China where education is almost non-existent or played down, HIV will never end. Empty words to seem to appear to be doing something, is just a waste of money. The HIV Industry seems to be very good at this. Always about 2-years behind actual need – just look at the employment needs of AIDS survivors in 1997/98 – when services were introduced they were way off course. You can only have so many programs that teach you how to write a resume, or attend an employment interview. Every single return-to-work session I went to do talks at had the same people in them. They just moved from one group to another, never putting the teaching into action. Where was the advice for people who wanted to be re-educated, or start a business, or upgrade a hobby,or buy into a franchise? It was non-existent. These people were the ones who fell through the cracks for lack of support and services. This has always been an ongoing problem. Naturally, the lack of funding is always blamed – though enough money to pay huge salaries – when really it is a lack of foresight, and imagination. Of course, everything is now wrapped up under the umbrella of Community Health, so any hope of imaginative thinking is now out the window. Those who hold the purse-strings control everything. It is a sad state of affairs. Groups like “Positive Life” no longer acknowledge their roots, nor do they move in the directions set down by the original founders. They are out of touch with their memberships, are indeed losing them. In the race to save money they are dropping resources that keep everyone active within the group. Even Positive Speakers Bureau inductees are now told what to talk about, and bang on about the same old messages and sprout the same old statistics. The trouble is…no one gets sick any more, so there is nothing to talk about for an hour. Perhaps it has outlived its use.

If one has to be totally frank, service delivery, information and services are no better now than they were 20 years ago! In many cases, they are worse. One friend of mine complains of the lack if easy access to HIV meds, and he has to spend a lot of time travelling to obtain them. He also comments on how he and his partner feel isolated and-reclusive due to no social groups to mingle with, and the constant heed to continually go through your medical record every time you change providers. Pretty sad state of affairs considering he only lives in Canberra.

Being my 33rd anniversary of life with HIV, and with World AIDS Day approaching I have written a personal retrospective of that period hopefully for publication around that time. It is 2,500 words long…not a lot of words for 33 years. If you are interested, follow the link. Not quite as controversial as this!

https://timalderman.com/2013/06/05/getting-on-with-it-a-31-year-retrospective-of-life-with-hivaids/

For information on the Concorde Trial – http://aidsinfo.nih.gov/news/5/concorde-trial
Tim Alderman
(C) 2014

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Seeing In Time

This article – now edited – was written in 2001. I intended to sue St Vincent’s for causing my loss of sight by not testing me for CMV in 1996. I had been given a list if solicitors by HALC (HIV/AIDS Legal Centre), and had picked one out. It was pro bono, and I had several discussions with him. However, charges such as searches and photocopying etc were my responsibility and when the first bill for $1500 came in, I just had to drop it. 13 years on, the predicted retinal detachment has happened and a lot if other shit besides. I am now contemplating having my left, totally blind eye, removed and replaced with a prosthetic. What happened here was just an introduction!

I have come to realise, perhaps a bit late in life, that you spend far too much time bending in the general direction of things instead of sticking up for yourself and saying no, this is not what I want, or the way I want things to go!

I have decided to sue a local hospital. That I have chosen to do this has come as a tremendous shock to me, though those around me seem to have been waiting for me rectify what has been, for me, a life changing event.

By 1996 I had accepted that sooner or later, AIDS was going to get me. What I hadn’t counted on was that St. Vincent’s hospital was going to assist in my chances of survival! – and in the one ward they had where I always felt I would be safe – Ward 17, the dedicated HIV/AIDS ward.

It was a sudden change in health status that delivered me to the A&E department. I had collapsed outside my apartment building, gasping for breath, clutching my chest, thinking that a heart attack was going to beat AIDS to the crunch, or that PCP had finally caught up to me, as it seemed to do to all in my state. It turned out to be neither – I had a collapsed left lung, though being HIV, they moved me into Ward 17 after inserting a tube to keep the lung inflated. Most of us assume that we go into hospital to be cured of health problems, or at least receive a better standard of medical care to assist you to a slightly higher standard of health than you have when you enter. Well…I have to tell you it doesn’t always happen that way!

I firmly believe that some people go into health care because they truly believe in what they are doing. They truly believe they can make a difference, that they can benefit people who are ill or are disabled. These people are not professors of medicine, do not have a fancy examination room with a prestigious address, and are not heads of departments. The well-heeled medico’s who share these attribute have strings of initials after their names. They do ward rounds with a string of nose-in-the-air arse lickers and sycophants. St Vincent’s at this time had more than its fair share of the latter, and unfortunately, some of them were in HIV medicine!

Now, I don’t want to give the impression that I was just in hospital with a collapsed lung – it was more complicated than that. I was in the midst of changing doctors, so didn’t actually have a GP when I was admitted to Ward 17. My scripts for AZT had just run out, I had chronic anaemia, chronic Candida, and weighed in at about 50-something kilos. In other words, I was a very sick boy. Now, under normal circumstances, with a CD4 count of about 10, they would test and examine you for ALL AIDS related illnesses – PCP, CMV, MAC, neurological and psychological problems. For some unknown reason. Sure, they treated – and eventually repaired – the collapsed lung. They tested me for PCP – negative result – and gave me a blood transfusion, but that was it. No eye examination, no dietician, no occupational therapist – no, that’s a lie, I did have one session with an OT, and though she promised other sessions – she never quite madeit back.

So I lay there for 10 days, drifting in and out of sleep, as you tend to do when you are in this bad a condition, suffering in silence the daily ward rounds with a
professor who seemed more interested in prestige than care, with his little band of sycophants, who seemed to assume that this was what was expected of theM. No one seemed to particularly care, so I was thankful for friends, for without them I think I would have gone mad.

Death seemed pre-ordained at this time I felt I had outlived everyone else anyway, and that my time was drawing to a close. I had predicted 2 years when I quit work to go on the pension in 1993, and had managed 3, so in many respects I felt I had survived beyond expectation, and short of a miracle, I was going through the final stage of my life. I was, to all intended purposes, fulfilling expectation.

So, with a repaired lung, a couple of pints of fresh blood, and some Candida medication, I was discharged 10 days later. No HIV medications, no doctor. I had my discharge papers sent to a local HIV GP, who I didn’t know from a bar of soap, hoping that she would feel sorry for me, and rush me through the waiting list. Thankfully, she did just that!

Two days out of hospital, and her receptionist rang to say my discharge papers had arrived, and that even though they didn’y know who I was, the doctor wanted to see me. I would like to think, in hindsight, that this was almost like some sort of sign, as having my hospital discharge sent to her was an act of providence that probably saved my life.
As soon as I mentioned to her that my vision had been ‘greying over’ for a couple of weeks, she was immediately on the phone to the Prince of Wale’s Hospital Eye Clinic at Randwick. They promised that somebody would stay back at the end of clinic until I arrived to have my eyes checked. They thought at that stage that I had CMV retinitis, but could not be certain enough to confirm the diagnosis. I had to travel to Hurstville the next day to see a leading ophthalmologist, an expert in CMV. He confirmed the diagnosis, and by the time I arrived home that afternoon, their was a message to ring the doctor. She wanted me admitted to Prince Henry Hospital straight away.

Prince Henry added other health items to the list St Vincent’s had. On top of chronic anaemia and Candida, and my 10 CD4 cells, they added chronic bilateral CMV retinitis, and Wasting Syndrome. Pandemonium was about to strike, but at least this time I felt as though people cared. Prince Henry was much more grounded in reality than St Vincent’s, and whatever my prognosis may have been – mortality was never discussed – they went out of their way to help me. Sure, I had a drip in both arms, was being transported to Prince of Wales twice a week for intraocular injections of ganciclovir, and I was a bit of a guinea pig because of my condition – medical students must love people like me, as we become a living text book – but they did care. I had a dietician who planned meals and snacks for me, and nurses on hand to help me during my night sweats. I even had a reporter from Japan interview and photograph me, as he was doing a piece to be published in Japan. After seeing me, he was concerned that the Japanses ‘head-in-the-sand’ attitude to HIV/AIDS was something to be seriously concerned about.

To be honest, the two weeks in Prince Henry gave me a different perspective on many aspects of life. There was the guy in the room next to mine – I had a huge room to myself in Marks Pavilion, and the windows looked out over Beauty Bay – who had terminal cancer. Not once, despite whatever he may have been going through, did I hear him complain or whinge about his lot. He virtually lived in the hospital, and even had his own stereo moved in with him. And the young guy who was at the opposite end of the ward to me. He also had CMV, but fuck, he was so young, so innocent! We sat together in the eye clinic one day, and he grasp[ed my hand, cuddled up to me, and cried. I wanted to give him some hope, but I would have felt like such a hypocrite. I didn’t know if their was hope for me at that stage, let alone try to give it to someone else who I knew was worse off than I was.

Well, they saved my sight – sort of! The injections, and eventually $10,000 worth of ‘Vitrasert’ ganciclovir implants managed to save the sight in my left eye. As for my right eye, the optic nerve was damaged by the CMV, and despite efforts on everyones part, I lost 80% of the vision in it, and the impact on my life has been…disconcerting. I have regular checks every few months now, and I have to be careful not to bump my head hard on anything. The scar tissue in the left eye is so dense that they are concerned now about me ending up with a detached retina. I’ve also had two operations to remove cataracts caused by the implants. They originally estimated a 4% chance of cataracts from the implants, but 12 months later this prediction was upgraded to a 100% chance. Some odds you can’t beat.

But this has been the least of my worries. Sure, my right eye has, in some respects, compensated for the loss of vision in my left, but not entirely. It took me twelve months to adjust, but that twelve months was not without incidents, such as tripping over some tree roots in Crown Street, and landing flat on my face in front of some people coming in the opposite direction. I also tripped and stumbled a great deal as my vision tried to compensate for a change in everything, including perspective. Stairs with contrasting edging strips became ramps – at least from my perspective – and ‘I’m sorry!’ became part of my everyday vocabulary as I bumped and staggered my way around. That is something that even 5 years down the line, I have never quite gotten used to. This would not be the first time I have stated that in some respects, it would have been easier to have ended up completely blind. At least that way, I would have a white cane, or a dog, and people would know I was definitely blind, and not give me condescending looks every time I run into someone. For some unknown reason, it has always ended up my fault. I just accept.

Rules of our household – don’t leave anything sitting low on the floor, or hanging to my left when I don’t know it is there. When walking down the street, keep to my right. If you don’t keep to that side, expect me to keep moving to ensure you are there. Go into the city? Not on my own these days. As much as I love the city, and love to watch it grow, it is a place for people in a rush, not a place for people who are visually impaired. Too many people, too many doorways for them to rush out of, and too many people crushing into confined spaces. I miss it very much, but it is not a place for me anymore. I shop locally, and that is hazardous enough for me. Do anything during the peak hour rush? Not likely these days. I had to meet David at 6.00 at the Entertainment Centre, to attend a couple of concerts. I actually mapped out a way to get there that would have a minimum of people that I would have to avoid. I go to daytime lectures and tutorials at UTS to avoid travelling too and fro during peak hours. I’m also trying to get them to contrast edge-strip the black granite stairs in the Tower Building, so that visually impaired people can see where the stair edges are. That is one fight I may yet win. Oh, and I shouldn’t forget that I kick small children.
David, who is my partner, and I went for a walk down Hall Street, leading to Bondi Beach, for one reason or another – we were probably looking for somewhere to eat breakfast. Sure enough, for a split second, I wasn’t watching where I was going and the next thing I knew, this kid had run straight onto my foot as I took a step forward. He just came out of nowhere, as kids do, and I managed to literally lift him into the air with the forward motion of my step, and launched him off to the side of the footpath. Thankfully, he landed in the grassed area around some trees growing on the footpath. I would hate to think what may have happened if he had landed on the footpath itself. I don’t know who got the biggest fright – the kid, myself, the kid’s father, or David. The father came running as I picked the kid up to make sure he was okay, but the look on the father’s face said it all – It was my fault, and I should have been watching where I was going. Even an explanation that I was
partially blind, and hadn’t seen the kid coming didn’t seem to sit well with him, nor did a multitude of apologies. Now, I dare say the kid probably forgot the incident 10 minutes after it happened, but It is still a nightmare with me. Whenever I think about the state of my eyes, that is the one instant that comes straight to mind. It’s not just the incident with the kid – I’m aware of that. It is that in some way, these sorts of things happen to me everyday, though fortunately with larger adults, not small kids. Despite all my precautions, despite taking my time getting around, despite walking metres up a street to use crossings or lights, despite great care at intersections I feel it is only a matter of time before I either seriously hurt somebody, or they seriously hurt me.

So I’m not just going to sit back and cop it sour anymore. Somewhere along the line, in a hospital, on a particular time on a particular day, somebody, for whatever reason, decided not to do something, and now I’m paying the price. Well, it’s time for someone to pay for their oversight, and the time to pay is NOW! My health is as good as it’s going to get at the moment, and with it being unlikely that I will ever return to full-time work, or to any job that requires me to get stressed, it is time to take action. I’m not going to ignore it anymore, or pretend that it just didn’t happen. It did, and my life has never been the same since.

Personally, I think that they, like Prince Henry, and certainly me, never expected me to live, so just doing a minimum of care in 1996 may have been acceptable practise, especially in an area of medicine that has always been cash strapped. But I didn’t die! I am well and truly alive, and the time for revenge is at hand. I hope that at the end of the day, they will learn several lessons. Never assume anything; never underestimate the strength of the human will, and mind; and never think people are just going to forget about it! We Don’t!

Tim Alderman
Copyright ©2001

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Bullied

Bullying is the use of force or coercion to abuse or intimidate others
Wkipedia

Bullying has become the new social curse, and no one is exempt from its venom. Hardly a week goes by without it rearing its ugly head in the news, or on a current affairs program. Bullying is infecting school yards, work places, committees, sports fields, political arenas . It is anywhere that people, who think it is right to degrade and demean those who can’t or won’t fight back. It is insidious and hateful, performed in dark mould-ridden spaces where it can’t be witnessed by others, it is in a whisper, a slap, a push, a word. The spiteful miscreants delude themselves that they are the strong preying on the weak, when in truth the strength lies with those who bear the brunt of it – at least until pushed too far. This hateful, soul-destroying disease must be wiped out.


As a male who has always been, at least to my way of thinking, obviously gay, I’m surprised I have never encountered much bullying in my lifetime. I was always a popular student in most of the s schools I attended, on deed was often voted in a a class captain or vice-captain. The one time in boarding school when a rather largish – in girth – school bully attempted to take something off me by grabbing and holding onto it, one of the strapping country lads, who fortunately hung out with my circle, took him on and put him in his place. He never harassed me again. The other occasion is outlined below, and was a situation I would not allow to happen again. There is a misconception that bullying only goes on in school yards. Think again! It gies on all around us every day. And adults are not exempt from it. One only has to look at what has been going on in the Australian political landscape in recent times to know that. it is time for it to stop, but that will only happen if good men – and women – step in and say ENOUGH!

This is a brief tale of subtle bullying, revenge of a sorts, and deferred regrets.

As I have often mentioned to friends, as far as being bullied as a gay man goes – and God knows it is obvious enough that I am gay – I have had little more than the occasional ‘poofter’ thrown at me from a passing car’s window over the years. However, when I did encounter the evil beast in its true disguise, it left an indelible mark.

In 1993 I was managing a ‘Liquorland’ store in Darlinghurst. I had started there in 1990 as a senior shop assistant, after managing “Numbers” bookshop for 7 years – just up[stairs from the ‘Liquorland’ store – and badly needing both a change of scenery and a job that was not as monotonous as running a sex shop. It was known when I started at ‘Liquorland’ that I was gay, and HIV+. I made my HIV status known because I worked on a daily basis with glass. Serious accidents are part and parcel of working in that retail environment, and I wanted to ensure workmates were cautious when dealing with severe cuts etc.

The Manager at that time was gay-friendly, as was the Area Manager. In fact, they had a lesbian working as the Assistant Manager, so there were no problems at all…at least at that time. Six months after starting, Diane left and I progressed to Assistant Manager. Then when the Manager was transferred to another store I became Manager. Now, it always seemed an obvious thing to me that the best person to have managing a business in the gay ghetto of Darlinghurst was someone gay, someone who knew the local clientele and could deal with them on a personal basis. Well, obvious to everyone except the new Area Manager who came on board just after my promotion to Manager. I should point out that being a Manager in the Coles/Myer Group at that time held very little in the way of privileges – you were only paid $40 a week more than your Aaistant Manager. Being under contract you lost most of your time off, and were expected to work long, hard hours. Because bonuses were based on store profits you were ridden hard by your Area Manager to get results.

My health was going through one of its tough periods at this time. I was on high levels of what antivirals were available at that time. Not having recovered from a very serious bout of viral pneumonia earlier that year I found myself working long on top of a dreadful diet, and abusing both cigarettes and alcohol. One might say I had the perfect recipe for a health disaster. Add to that a new Area Manager who was not only homophobic but also HIV phobic, and you have real problems. At that time I thought I had about two years of work left in me before departing this mortal coil from something HIV-related – you have to remember that combination therapy was not a option at this time, and wasn’t until 1996. I was seriously starting weighing up my options – did I take a demotion at work back to Assistant Manager – lets face it, the stress would be a lot less – or did I leave and take the Disability Support Pension option. It was a decision that was soon made for me!

I was due to take a fortnights leave in early November of that year, and had given a months notice of taking it. I had also decided to take a demotion, and the Area Manager had coffee with me at this time, ostensibly to discuss my options. I told him that for health reasons, I wished to go back to the position if Assistant Manager, and could it ge arranged at either Darlinghurst or one of the other Eastern Suburbs stores. His suggestion was that if I was going to start having serious health problems, I should consider leaving the organisation altogether, especially considering that I had an illness with a almost pre-determined end result! Not an suspicious attitude! I suggested that my health issues would be resolved by less stress, thus my request for a voluntary demotion. He appeared displeased, but said he would organise things, again reiterating that it was probably time I left the company. I went back to the store feeling that things were not going to get any easier for me, and as it turned out, I was right.

Let the games begin!!

This particular Area Manager had bullied me in subtle ways ever since he started with the the company. It is a difficult situation, as it is always done out of earshot of other staff, and knowing that their is no way for me to back up complaints to head office, he was free to get away with anything. This is typically how bullies operate in the workplace.

The below scenario was prefaced by an event that was to bring home to me just how demeaning and demoralising the tactics of a bully can be. The sister of a Head Office executive was organising a work function at a restaurant in a back street nearby. The wine order,, address and delivery instructions had been entered up in the shop diary for my attention on the day of the function. The morning of the function started with a nightmare in the shop. Arriving to open, I found that the Assistant Manager, who had locked up the night before, had forgotten to hand the keys over to the staff on with him. This meant I had to ring him, then wait outside the shop until he turned up with the keys. On finally opening the store there were deliveries waiting to be unloaded, the float to be put into the register, the previous days takings to be rung through to Head Office, and customers served. It wasn’t until I received a phone call from the restaurant to say the wine hadn’t been delivered that I realised I hadn’t checked the diary, and the wine delivery had been forgotten! As compensation, we invited the entire party to the store to select the same quantity of wine, but with no restriction on price. They appeared happy with that. I apologised to the woman, rang her brother in Head Office, explained what had happened and apologised to him. That should have been the end of it, but no! The Area Manager had to get involved. He must have rung me a dizen times over the next couple of days to berate and belittle me about the mistake, then made me ring the woman again and apologise a second time, then the following day I had to buy her a bunch of flowers, which gad to ge personally delivered to her at her workplace, then I had to ring her a third time to apologise. I don’t know who was more embarrassed by the whole grovelling scenario – myself, or the poor woman. I have no doubt the Area Manager loved every minute of it. I was reminded of the event on every possible future occasion.

So, to my final month with Liquorland.

The first thing the Area Manager did was bring in to the store another staff member to be trained up to my position. I could never quite work this one out, as I already had a very good Assistant Manager who was more than able to take over from me – and in fact deserved the promotion. Not only was a new guy brought in, he was placed on the same pay level as me, despite not actually being a Manager. This, of course, effectively undermined my authority. Because he was on an equal footing with me, staff were answerable to both of us, but as I was about to be moved to another store I was told that he was to have the managerial authority. So, for the next three weeks while training him to take over as manager, he controlled the store and I was left twiddling my thumbs behind the cash register. This was very demoralising, though as I was to find out shortly, there was a method in the Area Managers vindictiveness..

My holidays eventually rolled around, and off I went, thinking that in two weeks I would be starting in a new store as an Assistant Manager. There was an Assistant Manager position available in the Surry Hills Mall store, and I was informed I would be filling tat position. A week before returning to work I still had not had the position confirmed, so rang the Surry Hills store to find out if they had any confirmation of my appointment, and to find out what roster I would be on. The store Manager knew nothing about my being transferred there. He told me he would look into it, and get back to me. By the Thursday of that week I still had heard nothing, and started leaving messages with the Area Manager to contact me so that I knew what I was doing on the Monday when I was due to return to work. Nothing! The Surry Hills Manager still had not heard from him, and had no idea what was going on. I decided to pay a visit to the Darlinghurst store and see if I could pin the Area Manager down. The new guy who was now Manager asked me to come out the back with him for a chat. He told me he felt really badly about the shabby way I had been treated. He had been told by the Area Manager when he started to make my life as uncomfortable as possible in the hopes that I would resign. This hadn’t happened, though he (the area manager) was sure that in the course of my holidays I would resign. The store Manager, in an about face, told me to hang on, as if I resigned, the Area Manager would get a great amount of satisfaction. Also, if I resigned before I returned to work, he could pay me out in lieu of notice,and get me out of his hair. The plan was for me not to return to work from my holidays.

I decided to dig in my heels – after all, he didn’t know that I now knew what he was up to. I kept ringing the Surry Hills store manager, and late on the Friday he got back to me to say that I was to start work there at 8.30am on the following Monday as Assistant Manager. I now had my position confirmed, and a plan in place. At no time did the Area Manager contact me to confirm any of this. At 8.30am on the Monday morning I turned up for work as confirmed – and gave two weeks notice. I believe the Area Manager was furious, but I can’t confirm that, as he totally ignored me for the next two weeks, despite regular visits to the store, and didn’t even bother to wish me luck on the day I left. At least I felt that I had a hand in my own demise – in the end it hadn’t been determined by him. I was talking to another gay Manager from another store in the area just after this, and found out he was encountering the exact same harrassment from the same Area Manager

After several weeks of tossing backwards and forwards whether I should report his conduct to the company or not, I decided to let it drop. My health wasn’t the best at the time, and I had no witnesses to the discrimination. The Darlinghurst store Manager – despite telling me what was going on – wasn’t going to back me up, as it would have put
his job on the line. He had, in fact, asked me not to divulge the information he had given me, and despite the fact that he had treated me like shit, I sort of felt sorry for him. After all, he was stuck with the Area Manager, and I no longer was.

In retrospect now, I regret that decision. It still plays on my mind from time to time, especially when I hear of others encountering bullying, harassment and discrimination in their workplace. I regret not mentioning it to my other staff members at Darlinghurst – none of whom had any issue with a Manager who was gay and HIV+ – and I especially regret not taking it further with the company and possibly onto the Anti-Discrimination Board. As I have mentioned to others, despite having no witnesses, and being in a his-word-against-mine situation (with the odds being stacked on his side, as he was a ‘company man’), at least there would have been a report about it, and I would have, at least, sewn the seeds of doubt. Even back in those days Coles/Myer had anti-discrimination policies, and he may – or may not- have been dragged over the coals. It is a regret that I now have to live with.

If you are suffering any kind of harrassment or discrimination in your workplace,report it! Your workplace should be somewhere you look forward to going to every day, not somewhere that you sneak to with trepidation, wondering what is in store for you to make your life difficult. Even if you have no witnesses to what is being done to you – the people making life difficult for you will make sure there is none to back up your side of the story (like my being taken out of the store and to a cafe to be told he thought I should get out of the company). It is important both for your confidence and self-respect to ensure that there is at least a report written up about it, and that it goes into the company records, probably through the HR department. There are also community and government organisations who can advise and direct you as to what actions can be taken.

Bullying, harassment, discrimination and prejudice are NEVER to be tolerated – anywhere! By anyone!

ThIs youngster who hit back made headlines. You can only be pushed so far, for so long.

Tim Alderman
Copyright 2013

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Bug Chasing – A HIV Phenomenon

Bug Chaser: A person who seeks to become infected with HIV.
Bug Chasing: Actively engaging in sexual activity with the goal of acquiring HIV.
Gift: HIV.
Gift Giver: A person who gives the gift of HIV to an HIV negative person.

In February 2003, Gregory A Freeman wrote an article on bug chasing for “Rolling Stone” magazine. It was a highly controversial article, and any Googling of the term “bug chasing” will bring up endless results from the piece. So I will not rehash old ground, especially 3-year-old ground. “Carlos”, the gay guy he uses as his interview subject is a self-obsessed, hedonistic guy who truly needs to get a life, as distinct from trying to destroy it, which he seems hell-bent on doing. The article appears, at least to me, to be a bit dodgy, both in its emphasis on the opinions of one extremist, and its ability to distort the statistics of experts. However, it does raise some interesting issues.

For starters, are we to make the assumption that “bug chasing” is going on? I dare say that if it was happening in 2003, it is happening now. If we admit that barebacking is a reality, then we have to admit also for “bug chasing”. In Andrew Barkers article “Bug Chasing” (1), he states that “Not surprisingly, the stigma and fringe quality of bug chasing is something that very few people would admit to doing. Of course, people were saying the same thing about bareback sex a few years ago, and now the term – and the activity itself to a lesser extent – has become a normalised, if not accepted, part of gay culture”.

So, if we accept that it is happening, we have to ask why! Not for one single moment, as a HIV+ man, could I ever condone the practice of bug chasing. However, having said that, when I read these articles I can sort of understand where these people were coming from. I was amongst the first people officially diagnosed with HIV in Sydney back in the early 80s. At that time, I had a HIV- partner, and though our relationship broke up shortly after this, we remained as flat mates further down the track for 10 years. These were the bad years in HIV, when just about everyone in our group of friends was infected, and many died. My flat mate remained negative through all this time, and still is. However, he stated to me on one occasion that he wished he was HIV+, as it would be easier for him to deal with the situation, and he would not always feel so “left-out”. Needless to say, he never turned into a bug chaser, but you can see the thinking behind it. Other underlying causes for people to take up this fetish – and I use the word loosely – are various forms of abuse like drug and alcohol use, poverty, lack of social supports, homophobia, low self-esteem, poor mental health, perceived invincibility and survivor guilt. In his article “Bug Chasing:
Why Some Men Want to Become HIV Positive” (2), Ashley Shaffier says “Those who seek HIV are called “bug chasers” and like most people they want to be involved in something that separates them from the rest of humanity. A few find something special by becoming infected with HIV – Not everyone has the virus, which makes those who are positive different. They are also not alone. “They see those living with HIV as a cohesive group that welcomes its new members and receives vast support” (Freeman). Freeman goes on to say that “The sense of being my brother’s keeper is never discussed in the gay community because we’ve gone to the extreme of saying gay men with HIV can do no wrong. They’re poor victims, and we can’t ever criticise them.” Another reasoning behind bug chasing is that some do it for the thrill of it, getting their kicks from the danger element, the “will I get it this time, or do I get to try again” attitude. “Many people engage in socially acceptable extreme sports for the rush, knowing that they’re risking their lives jumping from planes or free-climbing a rock face. And many do lose their lives. They are heralded by some as adventurous. One could argue that bug chasers are seeking a similar risky thrill” (Barker).

Another reasoning behind bug chasing is safe-sex fatigue some 24 years after AIDS first emerged in American cities. Many who have practiced safe sex for this long a period of time crave to have sex “the old fashioned way”, without the use of condoms, good old skin-to-skin sex. Normal sex is seen as being almost unattainable, something from the past that will never be revisited.

Whatever the reasoning behind it, it remains a very scary phenomenon. Some of the statements made by “Carlos” in the “Rolling Stone” article send a chill down your spine: “I know what the risks are, and I know that putting myself in this situation is like putting a gun to my head”; “When I have sex, I always like to make it special, a really good time, something nice and memorable in case that is the one that gives it to me”. Carlos feels that living with HIV will be a minor annoyance, that HIV is not such a big deal anymore. “It’s like living with diabetes. You take a few pills and get on with your life”. I think quite a few of us may have something to say about that. I also feel that there is a general lack of empathy for many HIV+ people, and a lack of acknowledgement that many of us were infected in the very early days of the epidemic when very little was known about it. I don’t like to use terminology like “innocently infected”, but for some of us, that is the fact. Given a greater scope of information, and an acknowledgement of just how deadly HIV was going to be would have been a wake-up call to many of us. The playing-down of information in the early days was a bad move, a disservice really, though that cannot be used as an excuse today. Given the amount of available information, and given the anecdotal stories of those who survived to now, one has to wonder how they come to the conclusion that bug chasing is a good thing.

Even the language itself is scary, the use of words like “gift”, “gift giver”, “bug chaser”, “conversion (from negative to positive)”,and “bug juice”. Doug Hitzel, a former bug chaser who is now HIV+ says, in Freeman’s article “Bug chasing sounds like a group of kindergartners running around chasing grasshoppers and butterflies…a beautiful thing. And gift giving? What the hell is that? I just wish the terms would put some real context into what’s going on. Why did I want to say that I was deliberately infecting myself? Because saying the word infect sounds bad and gross and germy. I wanted it to be sexualised”.

The internet itself has helped in the spread of bug chasing, with sites dedicated to it and its followers. I have to admit to not being able to find any to aid in my research, though I’m sure they are there, possibly linked into barebacking sites.

Freeman interviewed Dr Bob Cabaj, a public official working in San Francisco in psychiatry. Cabaj admitted that statistics were hard to come by, and he estimated that at least twenty-five percent of all newly infected gay men fall into the bug chasing category. Naturally, “Rolling Stone” took this figure literally, and on-board, and calculated that of the then 40,000 new infections in the United States every year, around 10,000 were attributable to the more liberal definition of bug chasing. This figure caused such a huge furore that Cabaj denied giving Freeman any specific percentages, and he wrote a letter to “Rolling Stone” asking for a clarification to be printed, which then stated that only a “certain percentage” of new HIV infections may be deliberate – but that this figure was “probably more than people wanted to think”. I think common sense would say that the figure wasn’t accurate, despite a lack of actual data on the subject.

Naturally, the religious right then had to get into the picture – no show without Punch – and have their two cents worth. Of course, they didn’t come up with anything original. The Rev. Louis B Sheldon, Chairman of the “Traditional Values Coalition” stated on traditionalvalues.org that “With bug chasing, barebacking and Russian Roulette parties (3) was part of the homosexual lifestyle (sic), it is not surprising that HIV infections are on the rise. And with sexually depraved individuals like Keith Folger and Vince Gaither (4) overseeing how Centre of Disease Control AIDS dollars are being spent, it is unlikely that this epidemic will decline any time soon…”. On altermedia.info David Mullenax informs us that “My wife and I discussed the issue of “bug chasing” at length over freshly brewed coffee and Italian biscotti. Each of us had difficulty in describing exactly how we felt about such insanity and madness…Homosexuality would not be a trendy alternative if it weren’t for a Jewish-controlled media that glamorises and insists that gays are the same as everybody else. To be gay is to be exotic, and thus revered. The many stories of death, some by infection and others by suicide, are never told on MTV…As the media promotes homosexuality as a hip and fashionable lifestyle, the anger is reserved for them….This is why gays should be pitied, and the anger reserved for the alien minority who run the majority of our news and entertainment outlets…Recruitment and outreach programs prey on the weaknesses of many of our young ones…Without (that) mental preparation, the gay lifestyle would be rejected by many vibrant and innocent White (sic) children who have become victims to this scheming…” etc etc, I’m sure you get the message.

A video was made of the phenomenon, called “The Gift”, and has been shown over here at one of the Queer film fests. In it, a young redheaded San Franciscan man tells the tale of how, at 19 he set out to become infected with HIV. “I thought being positive was a positive thing”, he says. “I thought I was just going to have a lot of promiscuous, unsafe sex. I didn’t know I was going to change (to HIV+) so fast. No one told me”.

In January this year, British editor Mary Wakefield, writing in the Sunday telegraph (5) describes her shock at discovering the underworld of bug chasing among homosexual males. Her investigation was fuelled by the funeral of a young man who recently died after deliberately becoming infected with HIV. The young man had invited his HIV+ boyfriend to live with him, and though being aware of the dangers of HIV, soon developed the disease and brain cancer. His HIV+ friend had also infected a previous partner and that man had died not long ago. After reading the article in “Rolling Stone”, Wakefield stated that “I remember being skeptical at the time – it seemed too creepy. After tens of millions have died of AIDS worldwide, after billions spent on medications, how could anyone seek it out?” This in turn led her to seek out the bug chasing underground on the internet. She observed “…there was a darker side, the romanticising of AIDS itself. Google led me underground, to gay clubbers with ‘HIV Neg’ tattooed on their biceps as an invitation to others to infect them, to online chats about HIV-spreading sex parties, talk of ‘conceiving’ the virus like a pregnancy and the intense intimacy of infecting a partner. “It offers a kind of permanent partnership, a connection outside time” stated the editor of a gay newspaper.”

So, it would seem that we cannot bury our heads in the sand and pretend that bug chasing doesn’t happen. I would like to think it was not widely practiced in Australia, but if time has proved anything, if it is happening on the gay/HIV scene in America, it is happening here. This article was prompted by an article I received last week from queerplanet.com.au, by Charlie Parker. He states in his article “Bug Parties” that “The Russian Roulette bug party. This is where a group of gay men have ‘no condoms allowed’, unprotected sex and no one’s HIV status is revealed. This type of party is treated like a game by the participants. The guy who becomes infected is the winner.”

I felt that if he thought it still relevant, then perhaps we needed to revisit the subject, rather than pretending it doesn’t exist, then in twelve months time or so, it will suddenly raise it’s ugly head again, possibly due to someone being infected this way, or someone dying, then with people saying “Oh, I always knew that was going on”.

Perhaps I should leave the last word to Carlos. As sad and pathetic as he appears, you can’t help but hope he wakes up to himself. When asked what would he do if he found out he was HIV+, he says he would move on to become a gift giver. “If I know that he’s negative and I’m fucking him, it sort of gets me off. I’m murdering him in a sense, killing him slowly, and that’s sort of, as sick as it sounds, exciting to me.”

I have goose bumps crawling up my arms.

Tim Alderman
Copyright 2007

References

1 Living + Magazine, November/December 2002
2 AssociatedContent.com
3 AUTHOR’S NOTE parties specifically intended to assist people get infected with HIV
4 AUTHOR’S NOTE San Francisco AIDS activists
5 15/1/2006

FOOTNOTEs:

  • CNN interview on Bug Chasing movie, July 2007 https://youtu.be/Bo_n0IPsC7g
  • Article in Sydney Morning Herald April 21, 2007 ‘HIV chasing’ a trend in gay communityApril 21, 2007 – 6:09AMA Melbourne man who fantasised about contracting HIV before actually being infected by the virus has spoken of a gay subculture in which infection is seen as “desirable”.The 20-year-old man, who does not want to be named, told Fairfax newspapers both complacency about the virus and the wish to have unprotected sex with an HIV-positive man he was in love with led him to become infected.”I wasn’t actively seeking it, but maybe there were parts of me, dark corners, that wanted it, that were thinking, ‘Let’s just do it and get it over and done with and then it won’t be an issue’,” he said.The young professional is the first to speak out about “bug chasing”, a behaviour in the gay community in which men seek to become infected with HIV.The phenomenon was highlighted at the recent committal hearing for Melbourne man Michael Neal. Mr Neal was accused of deliberately spreading the virus.A HIV-positive man said in court that “bug chasing” was “a big thing out there” and that he had been pursued on the internet by a man wanting the bug.”I just kept reminding him that it was not glamorous,” a witness told the court.Dawn Wilcock, of Positive Women Victoria, a support group for HIV-positive women, said the reaction showed a need for Melbourne’s gay community leaders to stop dismissing claims of the subculture as an urban myth.”There’s a lot of defensive and protective behaviour going on that is not addressing the potential repercussions of this,” Ms Wilcock said.”It’s a real problem. We know that 75 per cent of Victorian women infected with HIV are contracting the virus from long-term male partners, so the health campaigns targeting gay men need to target others in the community who would never publicly identify themselves as being gay, too.”The HIV-positive man said some men going to group-sex parties with HIV-positive men might want to “join the club” and have unprotected sex more freely.”I have had an extremely intoxicated person claim that he wanted it once,” he said. “I fobbed him off and he never came asking for it again.”
  • © 2007 AAPArticle in The Age 21 July 2007 “Gay subculture in ‘bug chase’ sees HIV as desirable Julia Medew and Karen Kissane

April 21, 2007
Dance with death
A MELBOURNE man who fantasised about catching HIV before he contracted the virus has spoken out about a gay subculture in which infection is seen as desirable.The young professional, who does not want to be named, told The Age a combination of complacency about the virus and the wish to have unprotected sex with an HIV-positive man he loved led him to become infected.”I wasn’t actively seeking it, but maybe there were parts of me, dark corners, that wanted it, that were thinking, ‘Let’s just do it and get it over and done with and then it won’t be an issue’,” said the man, who is his 20s.He is the first to speak publicly about taking part in behaviour that is known in the gay community as “bug chasing” — seeking to become infected with HIV. The phenomenon was described by witnesses at the recent committal hearing for Melbourne man Michael Neal, who was accused of deliberately spreading the virus.One HIV-positive man told the hearing “bug chasing” was “a big thing out there” and that he had been pursued on the internet by a man who wanted to catch the virus from him.”I just kept reminding him that it was not glamorous,” the witness told the court.Dawn Wilcock, the director of Positive Women Victoria, a support and lobby group for HIV-positive women, said yesterday that such accounts confirmed the need for leaders of Melbourne’s gay community to stop dismissing claims of the subculture as an urban myth.”There’s a lot of defensive and protective behaviour going on that is not addressing the potential repercussions of this,” Ms Wilcock said.Her organisation was extremely concerned about other kinds of HIV recklessness, including the behaviour of heterosexual men who have sex with other men and do not tell the women in their lives. Such men do not think of themselves as gay or even as bisexual.”It’s a real problem. We know that 75 per cent of Victorian women infected with HIV are contracting the virus from long-term male partners, so the health campaigns targeting gay men need to target others in the community who would never publicly identify themselves as being gay, too,” she said.The HIV-positive man said that some negative men who attended group-sex parties with positive men might want to “join the club” so they could have unprotected sex more freely. His own intermittent desire to catch the virus was more about wanting intimacy with his partner than a “tribal membership or a rites of passage sort of thing”.life for HIV-positive people was now reasonably good, and that contracting the virus “wouldn’t be as catastrophic as it might have been 10 years ago”.While it was difficult to tell how many men who fantasised about the virus actually tried to get it, he said, some men certainly advertised for it on the internet and asked for it during sexual encounters.”I have had an extremely intoxicated person claim that he wanted it once,” he said. “I fobbed him off and he never came asking for it again.”Many gay community leaders and spokespeople for HIV and AIDS lobby groups last month dismissed claims of “bug chasing” and “conversion parties” — group-sex parties where positive men have unprotected sex with negative men to give them the virus — after the concepts were aired during Neal’s court case.Mike Kennedy, the executive director of the Victorian AIDS Council — the peak body representing gay men living with HIV and AIDS — this week again told The Age it was an urban myth.”You will find one of everything you look for,” Mr Kennedy said. “But the notion that this is a big scene, absolutely not. The language of ‘gift givers’, ‘bug chasers’ and ‘conversion parties’ — it’s something that’s come off the internet.”An HIV worker who did not want to be named said there was a party line offered to the outside world on the issue of reckless HIV behaviour in Melbourne’s gay community.”The party line is that it’s not happening — ‘What? Us?’ ” the worker said.The worker agreed with Ms Wilcock that heterosexual men who had illicit sex with gays were the conduit for the virus into the wider community. The worker said that when such men were diagnosed with the virus, they rarely started using condoms with their long-term female partners, “because she’s going to say, ‘What’s this?’ “Ms Wilcock said that gay male organisations were not doing enough to confront this and the “bug-chasing” issue

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