Category Archives: HIV/AIDS

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

Article, Gay Interest, Health Information, HIV/AIDS, Opinion Piece, , , , ,

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!

Gay Interest, Health Information, HIV/AIDS, , , , ,

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

  

World AIDS  Day

biography, HIV/AIDS

I remember these lost friends and acquaintences today.

“They sparkle like jewels in my mind, like stars at night”.

Steven Breeze

Andrew Todd

Trevor Eyden

Gavin Murdoch

Mark Silcock AKA Marcus Craig

Kenneth John Smith

Mark ‘Davo’ Davies

Geoffrey Gordon Smith

Michael Fletcher

Michael Lavis

Peter Greentree

Leslie Albert Heathfield

Glen Evans

Gary Mayall

Stuart ‘Stella’ Law

Damien ‘Alexis’ Colby aka Damien Guy

John Doyle

Allen John Deith

Peter Bringolf

John ‘Goanna’ Ellison

Peter Vanzella

Frank Currie

Jonal Fenn

Jack Allen

Gareth Paull

Michael Bradley

Philip Boyd

Shane Pascoe

Graeme Baird

Vincent Dobbin

Peter Fehlberg

Gerald Lawrence

Peter Shepherd

Ray Hopkins

Paul Costello

Michael Beazley

Michael Gregory

David Edwards aka Sr Mary Daisychain OPI

Wayne

John ‘Sway’

Kevin Bailey

Gary Salton

Steve Allen

Philip Metcalf

  

Living with HIV – 1987 Style.

Autobiography, Gay Interest, Health Information, History, HIV/AIDS, , , , , , ,

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

Australian Gay Icons: Brian Patrick McGahen

Gay Interest, History, HIV/AIDS, Political, , , , ,

McGahen, Brian Patrick (1952–1990)
by Phillip Black
This article was published in Australian Dictionary of Biography, Volume 18, (MUP), 2012
Brian Patrick McGahen (1952-1990), city councillor, social worker, gay activist and social libertarian, was born on 3 March 1952 at Camperdown, Sydney, elder son of Patrick James McGahen (d.1963), hairdresser, and his wife Monica Marie Anderson, née Pettit, both born in New South Wales. Brian was educated at De La Salle College, Ashfield, and the University of Sydney (B.Soc.Stud., 1974). At the age of 17 he opposed the Vietnam War; he refused to register for conscription and was convicted of sedition for advocating draft resistance. He joined the Eureka Youth League of Australia, the Communist Party of Australia and the Draft Resisters’ Union.
In 1974-75 McGahen was employed as a social worker and drug counsellor in the methadone program of the Health Commission of New South Wales. When the Australian Social Welfare Union was created in 1976, he was a founding member. After travelling overseas that year, in 1977 he was an organiser for the Chile Solidarity Campaign. Over the next three years he worked on projects for the State Department of Youth and Community Services. With Social Research and Evaluation Ltd in the early 1980s, he reviewed the New South Wales Family Support Services Scheme.
Sexual politics had emerged as a social force worldwide by the mid-1970s. McGahen found like-minded activists in the Sydney Gay Liberation and subsequently in the Socialist Lesbians & Male Homosexuals. In 1978 he was part of a collective that organised the National Homosexual Conference on discrimination and employment. He was chairman (director) of the Sydney Gay Mardi Gras Association from 1981 to 1984, providing the young organisation with structure, direction and vision.
Remaining a member of the CPA until 1984, McGahen stood unsuccessfully in 1980 as its candidate in the election for the lord mayor of Sydney. In 1984, having campaigned as a leader of the gay community against the Australian Labor Party State government’s failure to repeal anti-homosexual laws, he was elected (as an Independent) to the Sydney City Council for the Flinders ward. A member of various council committees, he served from 14 April 1984 until the council was dismissed on 26 March 1987. Policies were implemented to prevent discrimination against homosexuals in council services.
McGahen became a director of a Sydney home care service in 1986, hoping to extend the service to people suffering from acquired immune deficiency syndrome. He was also concerned about immigration rights for the partners of gay men. Throughout the 1980s he was a consistent advocate for a permanent gay and lesbian community centre, preferably a registered club. In 1989 he joined the Pride steering committee, became treasurer, and soon gained support to set up such a club.
In 1987 McGahen was diagnosed positive for the human immunodeficiency virus. He decided to show that his carefully considered choice of voluntary euthanasia could be achieved in a dignified manner. Never married, he died on 3 April 1990 at his Elizabeth Bay home, accompanied by five close friends, and was cremated. He had fought with determination and enthusiasm for what he believed in, often against great opposition. In 1986 a homosexual social group, Knights of the Chameleons, had made him the Empress of Sydney, and in 1992 he was inducted into the Sydney Gay and Lesbian Mardi Gras Association Hall of Fame.
Select Bibliography

G. Wotherspoon, City of the Plain, 1991

R. Perdon (comp), Sydney’s Aldermen, 1995

Sydney Morning Herald, 17 September 1984, p 4

Sydney Star Observer, 6 April 1990, p 17

Sydney Morning Herald, 23 June 1990, p 69

McGahen papers (State Library of New South Wales)

Citation details

Phillip Black, ‘McGahen, Brian Patrick (1952–1990)’, Australian Dictionary of Biography, National Centre of Biography, Australian National University, http://adb.anu.edu.au/biography/mcgahen-brian-patrick-14206/text25218, published first in hardcopy 2012, accessed online 17 September 2015.

This article was first published in hardcopy in Australian Dictionary of Biography, Volume 18, (MUP), 2012

  

  

An Outsiders Overview of the HIV “Industry”

Article, Gay Interest, General Interest, Health Information, History, HIV/AIDS, , ,

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!

Getting On With It! A 33-Year Retrospective of Life with HIV/AIDS

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

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Have I Missed the Joke?

Article, biography, Gay Interest, General Interest, HIV/AIDS, , , , ,

This article was written in 2001, but the sad thing is that HIV quackery, cons and bogus inventions are still going on. There is no end to the lengths some low-life’s will go to to make money, and it is not just the HIV community they target. This is a few of the rorts going on back when this was written.

Type the query “HIV/AIDS+hoaxes” into the Yahoo search engine and see what comes back. You may be surprised to find that it will come back with 187 matches, and that is just for HIV/AIDS.

To follow all these links, or only to select a couple for investigation takes you into another world. You can look into fraud on a one-to-one basis by people who are simply unscrupulous, treatments and therapies that are on the verge of frightening, an underground antiretroviral drug trade, suspect complementary therapies, internet and email chain letter HIV/AIDS hoaxes, and urban myths.

The home page of the ‘Texas AIDS Health Fraud Information Network’ (TAHFIN(1)simply states that “The HIV epidemic has created business opportunities for many people. In many cases, people and companies pursue these opportunities with the sincere intention of helping while staying within the bounds of the law and maintaining fiscal integrity. The same motives can sometimes lead to harm even with the best of intentions. In some cases, the motive is to simply make a buck regardless of the consequences to those affected. The latter is what opens the door to fraud.” The Quackwatch site expands this further by saying that “The fact that HIV causes great suffering and is deadly has encouraged the marketing of hundreds of unproven remedies to AIDS victims. In addition, many companies in the ‘health food’ industry have produced concoctions claimed to ‘strengthen the immune system’ of healthy persons…many of the expert quacks in arthritis, cancer and heart disease have now shifted into AIDS” and that “…every quack remedy seems to have been converted into an AIDS treatment.”(2)

To explore all these areas, and the much vaunted question of ‘Does HIV cause AIDS?” debated on sites such as ‘Nexus’(3), ‘Is AIDS man-made?’ and the hoax of a new air-borne strain of HIV would require a lot more than the word allotment for this article.

The ‘cures’ observed on the Quackwatch site have included processed blue-green algae (pond scum), BHT (an antioxidant used as a food preservative), pills derived from mice given the AIDS virus, herbal capsules, bottles of “T-cells,” and thumping on the thymus gland. There is also Autohemotherapy – a worthless procedure in which a sample of the patient’s blood is withdrawn, exposed to hydrogen peroxide and then replaced. Add to this the entrepreneurs who have marketed covers for public toilets and telephone receivers with claims that this will prevent you from contracting the AIDS virus, and you have some idea of exactly what to expect.

Over at the “Educate-Yourself”(4) site, you will find yourself in for a real education. There are articles on ‘low voltage electricity’ to make HIV inactive. Dr Bob Beck designed the blood electrifier. The site claims to have seen laboratory reports and Institutional Review Board studies that seem to clearly support claims made by Dr Bob Beck that his blood electrification device has caused ‘complete spontaneous remission’ in literally thousands of AIDS patients, cancer patients, and chronic fatigue sufferers, to name just a few. There appears to be a lot of ‘claims’ and no documentation to support them. The two methods used to treat AIDS patients consist of either removing a small amount of blood, electrifying it then returning it to the body, or sewing a miniature electrifying power supply along with two tiny electrodes directly into the lumen of an artery. The small unit had to be moved every 30-45 days, as scar tissue and calcification occurred around the implant unit, and could lead to artery blockage. The site also reports that hundreds of HIV sero-positive patients have been converted to HIV sero-negative with the use of ‘Ozone Therapy’. “Help is available to AIDS patients right now but the medical establishment is ignoring it” the site informs us. It does state, however, that ‘no evidence for the claims exists in RELIABLE scientific literature.

On December 22, 2000 the FDA(5) issued a safety alert on unapproved ‘Goat Serum Treatment” for HIV/AIDS. This unapproved product, produced in goats as an antiserum against HIV/AIDS, was already the subject of a ‘clinical hold’ by FDA, prohibiting its use until previously existing safety questions are resolved. (Since researching this article, this hold has now been lifted, and the Goat Serum Treatment is undergoing clinical trials).

In 1999, the FTC (Federal Trade Commission)(6) issued a warning about bogus Home-Use Test Kits for HIV. The kits were advertised and sold on the Internet for self-diagnosis at home. The kits showed a negative result even when testing a positive sample. The kits could give someone who was actually HIV+ a false impression that he/she was not infected. Some of the ads stated that the World Health Organisation and the FDA had approved the kits for use.

As far as AIDS urban legends go, the one about ‘AIDS Mary’(7) is probably the most famous. The legend is that the morning after a one-night fling, a man walks into his bathroom and finds the words ‘WELCOME TO THE WORLD OF AIDS’ scrawled on the mirror in lipstick. The legend is also known as ‘AIDS Harry’ (obviously depending on who is telling the story), and it was begun back in 1986, and basically expressed the fears surrounding HIV/AIDS at the time. This legend was actually used as a defense in a criminal trial in 19908. Jeffrey Hengehold murdered Linda Hoberg after sleeping with her, then being told by her that she had AIDS. There was no evidence to support the allegation, as Hoberg had been cremated, and Hengehold had never tested positive. In a similar vein, a 1998 Internet urban legend stated that AIDS-infected blood is being injected into unsuspecting moviegoers and young people dancing in bars or at raves(9). Somebody’s (no name mentioned) co-worker went to sit in a seat at the cinema, felt a prick and found a needle poking up out of the chair with a note on it saying “Welcome to the real world, you’re HIV POSITIVE”. “It’s all false,” said Sgt.Jim Chandler, a Dallas police spokesman. “This has not happened, and we would ask people to stop forwarding this message to their friends because it’s creating situations where police departments and emergency personnel are having to respond to inquiries about this hoax.”(10) Other reports of needle sticks at bars and raves were investigated, and found to be false.

Even the seemingly innocuous world of email communication has not been spared its share of AIDS hoaxes. On the 7th December 1995, the following email chain-letter was sent to J.Beda(11) by several of his acquaintances. It had an email address at SYR.EDU, and in the SUBJECT: aids.
>For a class project, I was wondering if this could be passed on to prove
>a point. In my human sex class, we learned that if somebody has received
>the HIV disease, and they don’t know about it, they could pass it onto
>people who they don’t even know.
> Could you all pretend that I have HIV, and I gave it to you.
>Then could you pass it onto your friends? Let’s see if the entire
>email population could get infected by me alone.
> Please remember that this is a lab experiment. I have to say that I am not intending to offend any one in any way.
> By the way, don’t erase this or the forwards from your computer.
>
>Thank you
>Young Bradley
People pointed out the parallels between receiving this sort of email and having nonconsentual, unprotected sex with a knowingly infected partner. This is commonly known as rape, and potentially as murder. The recipient pointed out to the sender some of the faults of the project, not the least of which is that chain-letters are a BAD THING no matter what the cause. The project also had problems with its implementation in other areas. It never ends. When is the school project finished? It contains no instructions on where to look for more information. It contains nothing indicating who was responsible, or who to contact if there are problems. It does not offer any education on HIV/AIDS. Apart from anything else, sending out this sort of email is against the terms of service of every computer system ISP.
Generally, emails of this type take one of two forms: those that promise/threaten good/bad luck, and illegal pyramid-scheme letters that promise to make you lots of money.

The most recent scam is one to come out of Thailand, and notified to all TAHFIN(12) subscribers on 27th August 2001. It tells of 5,000 HIV-stricken people sitting a soccer stadium for several hours to collect a drug called V-1, a supposed cure for HIV/AIDS. Unlike conventional HIV/AIDS cures, it works on the digestive system instead of within the blood stream. The apparent food supplement is distributed free. There are a reported 755,000 AIDS patients in Thailand, which is one of the major reasons the scam has managed to succeed in a country where the average earnings are $2,000 per annum. Distributors are touting the cure as ‘an oral vaccine’. The Thai Ministry of Public Health tested the drug on 50 people, and found it to have no effect whatsoever, positive or negative. V-1s creators rebuffed Ministry officials who requested the drug be tested by the CDC in the USA. It is feared that soon V-1 will be marketed in other emerging nations who are being overwhelmed by AIDS, and have few resources. It is felt that if governments are put under pressure by the mass-hysteria these sorts of cures create, they will just allow nothing to be done to halt the distribution. Salag Bannag, the distributor of the little pink pill claims that over 100,000 people will have received the drug by the end of this year.

Now, we haven’t touched Low Frequency Sound, Induced Remission Therapy, Colloidal Silver, Bio-Engineering, T-Up or a plethora of other products available on the internet, and through quacks masquerading as practitioners. This article is not attempting to stop people trying alternative therapies. What it is saying is please be careful! Do not part with your precious money for anything unless you have investigated any claims thoroughly. Don’t be taken for a sucker. In Australia, any drug or item that is promoted for use by the general public must not only contain details about what the product actually does, but also what side-effects it can cause. The most blatant element of a lot of the products that are advertised on the Internet is that they only state the positive effects of the drug or devise, and that no side-effects are reported. This sort of situation should automatically make you think twice about the efficacy of a product.

In an attempt to tighten up legislation, and make people aware of their responsibilities when promoting drugs or gadgets, in 1998 the FDA proposed to issue new regulations pertaining to the dissemination of information on unapproved uses for marketed drugs, including biologics, and devices.

Of cause, this only becomes relevant if you are caught!

Tim Alderman
Copyright ©2001

1 http://www.tahfin.org
2 http://www.quackwatch.com
3 http://www.nexusmagazine.com
4 http://www.educate-yourself.org
5 http://www.fda.gov
6 http://www.ftc.gov
7 http://www.snopes.com/horrors/madmen/aidsmary.htm
8 Ibidem
9 Ibidem
10 Ibidem
11 http://pobox.com/~j-beda/chain-letter.htm
12 http://www.tahfin.org

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Seeing In Time

Gay Interest, Health Information, HIV/AIDS, , , , , ,

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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Daily (Or When The Mood Takes Me) Gripe: Gay Sex Sites

Gay Interest, HIV/AIDS, Opinion Piece, , ,

Fuck me! I must be close to 160yo in Gay Years…at least that is how old I feel by the time I’ve wondered around a couple of the gay sex apps that are available. We politely like to refer to them as gay “dating” apps but let’s keep it real! If you have a profile on one or more, you check them regularly for oinks, woofs or squeals…whatever, then you are either hunting for a fuck, or a good dose of rejection! More of the latter than the firmer if you are several centuries old, as I am!

The very first site I joined, the only thing I lied about in my profile stats was my age – I knocked 10 years off it, being deluded enough to think it would make a difference. Everything else I was upfront about…perhaps a bit too much! It must have taken me about 20 tweaks to get it right…though still no action. I oinked guys…all to no avail….they oinked me, then when you tried to get a little bit of action out of them….there was always an excuse…I’m too tired!…I’m turning in for the night…etc etc! I had subscribed to this group, so I was paying money to play silly-buggers with a group of guys who just didn’t seem to care. I made a sort-of-friend out of it…thought he’d be a goer originally when I started messaging him, but when I finally got him to visit, he had more hang-ups than a charity phone-in! I’m still not sure where it’s going. As for the site…I’ve moved on.

Oh…did I mention I have a disability? Yep! 60 AND disabled. Also HIV*.!I copped the fucking triple whammy there, didn’t I! Severely vision-impaired! Totally freaks people out so it seems. I don’t know why! Maybe they think they are going to have to help me get around! Or that I might need some sort of care! Or that I mightn’t be able to find their cock or arse! Or maybe I’ll look like a total freak! Though I am more inclined to think I am seen as damaged goods, and that they do, in reality, just discriminate! There! It’s said! Discrimination is rife on these sites. And it is not just against disabilities! It is ageist, racist, hiv-status, cock-size discrimination. WTF!

Gay men and they discriminate! It’s not all that fucking long ago that we were the ones yelling discrimination when they wouldn’t give us law reform! And gay men whO discriminate against HIV+ guys I just don’t get at all!

I have 4 apps on my iPad. The grand total of encounters to date is – i skittish non-event; one sexual encounter at 4am after a bottle of wine and which I choose to forget; 2 actual fulfilling sexual encounters with really nice guys; and one guy waiting for me to arrange to have a coffee with. This out of probably close to 60
profile checks over all the apps. And not including the twinks-having-a-wank-while-I-do-dirty-talk-chat with them.

But some guys deserve to get nothing, I have to say. If you are going to put a body shot up…don’t hold your breath or hold your hands above your head to try to look slimmer…you look like you are trying to look slimmer! Don’t NOT not put in a photo…I don’t care if you are bi or otherwise…no photo, no chat;; DON’T put photos of flowers, or trees, or your dog, or a beach in place of a profile picture; don’t lie about your age,or cock size; look up the word “defined” regarding body type, in a dictionary; say SOMETHING about yourself or what you are looking for as well as your stats; be honest and upfront. If you are going to put “Prefer not to say” in every field, you deserve to be ignored!

And for the guys who use them…stop being wankers! Develop some ethics; stop discriminating; learn some manners; treat others as you want to be treated; respect others beliefs, and feelings; stop being self-indulgent; and, for heaven’s sake….

Develop some humanity!

Tim Alderman
Copyright 2014

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Disclosure

Article, Gay Interest, HIV/AIDS, , ,

My first disclosure was probably the easiest.

It was just after testing positive to HIV in 1985, when testing begun. It was done anonymously through the Albin St Clinic, and took a nerve-wracking two weeks for results to come in. Despite saying I probably wasn’t positive, my mind was saying otherwise, and the latter proved correct. So, my first disclosure, along with a lot of others guys who were undergoing the same process was at the bar at “The Oxford”, and was to a group of friends, some of who were also HIV+, some HIV-, and some who either didn’t know or didn’t want to know. Disclosure was imnportant at that time, as with a two-year survival period dangling there like a sword of Damocles over ones head, it was important to let everyone know that the supposed death sentence had been passed, then move on. It gave time for it to sink in both with myself and the friends I was closest to. They now knew what to expect – we had already experienced the quick decline of other HIV+ friends, and knew that the future was not something to look forward to. So let’s party! It was, I have to say, easier than I thought it would be to disclose.

The most recent time I disclosed was to a gym buddy and friend when we weree out for dinnerv one night. He asked me what I was doing these days, and I replied that I was doing some freelance writing for a couple of HIV magazines, and had been doing it for some time. That then led on to a conversation about how things had changed and you rarely heard of anyone dying from HIV these days. There was really no reaction from him at all – it was just a friendly chat about what we were up to, and HIV didn’t seem to register as anything devious or insideous in any way whatsoever.

In the interim between the first disclosure and latest, things haven’t quite always been that easy. Generally when cruising the bars for trade, I used to disclose as a way of getting rid of guys who couldn’t handle it, thus getting rid of the dross. It was also a way of picking up other HIV+ guys so that use of condoms could be dropped. We both knew where we stood. Though there was one negative guy who said it wasn’t a problem – at least until we were home and the jeans were down, thankfully at my place. He baulked, started to throw a drama and found the front door being held open to hasten his exit. That is the one and only person I have ever thrown out of my home.

The second problem disclosure – at work – was a big problem. Not for me, not for my staff, not for most of upper management. However, for one area manager it was a big problem and he bullied and harrassed me until I decided it really wasn’t worth the hassle anymore. I gave in notice, but didn’t let him off the hook that easily. I ensured that I gave notice at the most inconvenient place, at the most inconvenient time that would cause him the most hassles and problems. He didn’t speak to me for the two weeks of my notice period, and he didn’t say goodbye. Yeah, I was really upset about that. Not! I still have no regrets about disclosing on that job – I did the right thing by my staff, and if it cost me my position and my job, perhaps I didn’t want to be there anyway.

I have disclosed mid-fuck, as nothing had been said about condoms (we were at his place), and at the moment the evil deed was to be consummated I yelled out at him that I was HIV+ – several times, and it didn’t even cause a glitch in the proceedings. He disclosed nothing, and to this day I have no knowledge of whether he was pos or neg, though I did assume he was positive. It was all a bit too casual and nonchalant for him not to be.

As far as my everyday life goes these days with neighbours and new friends and the ilk I tend not to say anything, nor do I see any need to. Like a lot of people with health issues I
consider it my business, and it’s not as if I look ill or anything. It doesn’t affect my diet, my pill taking is done in private, and I just want life to toddle on without any hassles. As far as my local community goes I am just Joe Blow from next door or over the road, and that’s how I want it to stay.

Tim Alderman
Copyright 2010.