"...The fact is HIV is now a part of who I am, and as such, a part of my barebacking journey"

Such a simple statement it seemed, written on my blog in response to a reader who had emailed me to say that he was no longer logging on to read what I had to write, as I was now writing about HIV issues, despite himself being HIV+. 

It could have fallen into the archives of the blog, like so many of the postings I have made in the 6 years of writing Confessions Of...except that it caught the attention of others.  What's more, as a result of my commenting on an article on PositiveLite.com, it caught the attention of Bob Leahy, the Editor, and after a couple of emails back and forth between us, I had agreed to justify my statement from the perspective of both pre- and post- HIV diagnosis.  Whilst I knew what I meant when I wrote the words above, I had never sat down and thought long and hard about what exactly my "barebacking journey" was. Not for many years anyway.

My journey began aged 18 years. I was fresh out of 6th form college, not heading to university, finally coming to terms with my sexuality and in the process of coming out to all and sundry.  Temptation was all around me, each day brought new sexual encounters, new guys to be adventurous with. My libido was at its peak.  It was around this time, that I became aware with condoms, I was unable to get an erection, or maintain one once a condom was applied. I also knew that as someone who liked to get fucked, I wasn't happy with the sexual experience.  I somehow felt cheated, that the sex hadn't been fullfilling or as rewarding as it might otherwise have been had condoms been forsaken.

Of course I was aware of the risks, sort of.  The sexual education I had received at secondary school wasn't what one could call extensive. But somehow I knew that sex without protection exposed oneself to a whole miriad of STI's, some of which could be treated with a quick trip to the local GUM (sexual health clinic), others, such as HIV/AIDS, carried with them a "death sentence", as I'd been told to beleive, growing up in the late 80's and 90's with the tombstone adverts extolling "don't die of ignorance".

As time went by I took the decision not to use condoms, and in doing so, my exploits led me to the GUM clinic on various occasions to get the odd itch or spot treated.  With my early 20's, came a slightly increased level of maturity.  I took the time to look further into the risks associated with fucking without condoms.  I educated myself in the areas that the State had left me lacking.  What exactly was HIV? Was it a death sentence? What were the real life odds of being infected?  I knew what CD4 meant, what the phrase Viral Load indicated.  I knew that there were various medications available to treat HIV, that the arrival of HAART (Highly Active Anti-Retroviral Treatments) in the mid 90's had drastically increased the prognosis for those diagnosed with HIV from a death penalty to what is today coined a "chronic managable disease". 

With this level of awareness, also came a level of self questioning.  Was I truly happy with the risks I was taking?  Did a rewarding sex life, truly mean that I had to expose myself to the risks of HIV in the future?  It was a difficult time for me.  On the one hand, I wanted a rewarding, fulfilling sex life.  On the other, I didn't want to willingly contract a disease which would lead to a life time of complications and medication dependancy.   My desires and logic were at odds with one another.  A war raged in my mind.  It took a good year or so to reconcile the risks with myself.   

At first, I asked people their status, I'd only sleep with those who said they were negative.  I now know, that this is essencially sero-sorting - matching partners of the same HIV status together, in a bid to reduce the risk of transmission. But it didn't always work.  Many of my encounters took place in anonymous settings; bath houses, bar dark rooms, public restrooms etc.  Places where discussion about each others status just didn't occur.

During this conflicted period, I continued engaging in condomless sex, but each encounter would leave me concerned that I'd broken the camel's back. I'd stress and worry right the way through to my next HIV test.  Each time, the test would come back negative.  The negative tests, together with my risk-taking behaviour, combined to create a mild feeling of invicibility.  I guess a simple analogy would be that of Russian Roulette.  Except in my case, the barrel didn't have 5 empty chambers, it had hundreds, if not thousands.  Each sexual encounter put me at risk, but time and time again, the tests came back negative.

Eventually, the inevitable happened.  A guy I had just had sex with explained that he had lied about his status.  He wasn't negative, he was positive. I paniced.  I waited nervously until my next HIV test, where despite being convinced that it would be a positive result... once again, it came back negative. This all reinforced the (misguided and incorrect) conclusions that I was coming to in my own mind.  That whilst it was indeed a risk, it was a low risk.  More importantly, it was a risk that I as an individual was more than prepared to take.  Condomless sex was more rewarding, more intimate, more satisfying. It was also more spontaneous, more "heat of the moment" stuff... it was the sex that I was looking for. The risks, whilst very real, had over time been reduced in my mind by a continued negative test result.  

 In 2006, a close friend broke the news that he had been diagnosed HIV-positive after only 10 or so sexual partners.  Over the following couple of years, more of my friends who also engaged in unprotected sex tested positive. However my results constantly came back negative.  I was being open and honest to the test centre about the sexl I was engaged in.  They tried to change my behaviour, but the warnings were pointless, as I already knew the risks.  I wasn't doing what I was doing because I didn't know the dangers, I was doing it because I knew the dangers, and accepted them.  To many this is sheer wrecklessness. And I agree, to a point.   

To better understand my acceptance of the risks, it's important to look at the sort of person I am.  I've always been a risk-taker.  Aged 16 I got into rock climbing and hanggliding.  Aged 21, despite my parents' pleads for sanity, I got myself a sports motorcycle, racing around the roads of my native Yorkshire with wreckless abandon. Where most people see danger and instinctively retreat from it, I, like a moth drawn to the flickering backyard light, have always been attracted towards risky things.  Thus it was somewhat inevitable that as soon as I discovered risky sexual behaviour, I took an attraction towards it.

The clinic considered it strange that despite my continued encounters with people of unknown and positive serostatus, my tests always came back negative.  They began to talk about a natural resistance, a possible level of immunity to the virus.  One such avenue they wanted to explore was the CCR5 Delta 32 mutation. There has been much research done into this gene, and those with certain characteristics of i, have demonstrated a natural resistance to the HIV virus.  They wanted to perform tests for this; unfortunately funding wasn't available at the time.  It would have proved somewhat fruitless anyway.

 On a cold September day in 2011, I went for what had become a routine HIV test. I knew the workers there on first name terms.  Entering the room, we talked small talk while they prepared the test.  We skipped past the usual pre-talk of councelling, what you expect from the results etc. A small prick later, my blood was on the test, and we had gone outside for a cup of tea and a cigarette whilst the reaction took place. Twenty mins later we returned to the room, and the worker came in.  His face looked a ghostly white.  Straight away I knew that it had happened.  He looked choked as he explained that it had been a reactive test, and talked me through what the lines meant.  At 130pm on the 21st September 2011, I tested positive for HIV.

I had thought about this moment for years.  How I would react, had I really accepted the risks entirely in my mind, or was I kidding myself?  It seems that I had indeed adjusted to the reality I was living, and when the news was broken to me, I seemed to take it in my stride.  The poor worker was more upset than I.  An appointment was made at the local hospital for confirmatory blood tests to be carried out, and they came back a week or two later.  I had indeed contacted HIV.  My viral load was 105,000 and my CD4 was 971.  Quite a high number on both counts, but the consultant at the hospital was pleased with the CD4.

Over the next few days and weeks, I carried on as normal.  Until one day, walking through town during my lunch break, the reality of what had happened suddenly dawned on me.  The world I was living in, suddenly seemed a lot larger, a lot lonelier.  The people around me going about their daily business, oblivious to me.  I stopped dead in the street, and sat on a bench.  I didn't cry.  I wasn't scared.  But my mind was suddenly racing with the truth of what living with HIV now meant.  What about drug resistance? What about medication adherence? Who do I tell? Do I need to tell anyone? So many questions, so few answers.  The busker across the road carried on playing his set, the shoppers milled by, yet I sat there.  Motionless, quiet. Staring into space, a million miles away from where I was.  

That night I sent a close friend a text saying I wanted to meet up with him, and had something to tell him.  He's considerably older than me, and, having lived in London during the 80's, I figured he was a safe person to tell my news to.  I just felt that I needed to tell someone.  We had a few beers in the local gay bar, before moving away from listening ears, and finding a secluded corner of a real ale pub in the center of town.  It was the hardest thing I've ever had to do.  Remarkably, he took it as I'd hoped he would, and has been the most amazing support since.  In a world full of gossip merchants, where people enjoy trading in salatious tit-bits, this friend has demonstrated his worth in gold, and not told a soul. I've no idea how I'll ever repay his kindness, generosity and trust.  

Time went by, Christmas 2011 came and went, and my desire to live as normal a life as possible grew.  I decided I didn't want to hide my status.  Sure, the manner in which I caught it may leave much to be desired, but, as Josh Robbins puts it so well, I'm still Josh. If people ask me, I'll tell them.  There have been great improvements in HIV medication over the last 30 years, but the stigma of HIV still remains, perhaps as a result of, not despite of, the AIDS awareness campaigns I talked about earlier on.  I personally beleive that by talking openly and honestly about living with HIV, what it means to us as individuals, then we can collectively go some way in dispelling the myths and stigma of this virus. Thats why sites such as PositiveLite.com are so invaluable. 

They say that every journey begins with the first few steps, and my journey began all those years ago in deciding not to practise safer sex. The path I've trodden so far now has a fork in it.  Do I start using condoms, or do I continue on the journey as it began?  I've already made that decision, and it continues in the direction it began.  The painful truth is that condoms and I just do not get along.  I've tried in the past, and I've tried again recently... but it just isn't to be.  Many reading this will no doubt be aghast to read this.  Mine is a barebacking journey.  

I do however, now inform every sexual partner of my status.  I have no intention of lying or mis-guiding anyone about having HIV.  I have added sections to my website where I discuss HIV openly and honestly, I've added links to the main organisations which provide HIV and other sexual health awareness.  

As my condition progresses, I'll write more about living with the condition.  I'll write about my first medication experiences, I'll write about the side effects (this particularly is a worry of mine already). I'll write about rejection, as a result of being HIV+.  I'm aware, as I was of the risk of HIV in the first instance, that there is now a risk as a HIV positive person, of re-infection with a different strain, or of superinfection with a drug resistant strain.  I also understand that whilst I am not on medication, and my viral load remains unchecked, there is a real risk of passing the virus onto other people.  This latter point is something that sticks with me the most.  I have thought long and hard about it, before moving fowards in my journey. The circles I move in, the people that I have sexual relations with, are themselves other people of my nature.  People who are HIV positive, who have also accepted the risks of continued unprotected sex.  

Unprotected sex is risky, it is dangerous, and in most cases it will lead to HIV infection.  For me the risks were and continue to be acceptable, However for many they are not.  The work that organisations the world over are doing to raise awareness of HIV, to spread the message that condoms are the single most effective prevention of the onward transmission of HIV are to be commended. I support their work entirely.  I also follow with interest the current debate which is raging regarding the possible use of anti-retroviral medication in HIV positive people as a form of preventative treatment. Perhaps I'll expand on this in another posting, If PositiveLite.com will have me back.  

I personally beleive that if people are aware of the risks they are taking, they should be allowed to make the decisions they wish without hate, fear or attack from anyone else.  If someone is truly, totally and wholly aware of the risks of unprotected sex, then who are we to enforce upon them the use of a condom? Who are we as a society to belittle them, to make them feel badly for their choice of sexual practise?  

I understand that mine is a challenging and controversial view which many will take issue with. I don't write to upset, or anger anyone.  I write merely to explain that there are people like me out there. Other people starting out on a journey, many of whom are also taking the decisions not to use condoms.  Some of them are aware of the risks they're taking, others are painfully unaware.  We can not however pretend that people like me do not exist.  I think it is important that we ALL get a voice, and help to raise awareness of HIV and reduce the stigma of living with it regardless of our sexual practises so that people can make informed, educated decisions about the sex that they have. 

Many people write blogs about having HIV, many more people like to pretend that despite getting HIV from unprotected sex, if they don't say as much, it some how goes away, somehow makes it less "sinister", less controversial. 

The fact is, HIV is now a part of who I am, and as such, a part of my barebacking journey.  

Josh Landale is a 29yo blog writer from Yorkshire, England. Writing openly and frankly about bareback sex and issues affecting that community, he was diagnosed HIV+ in September 2011. He now also writes about his living with the virus, and how it impacts his life.

You can follow Josh on twitter @JoshLandaleXXX (NSFW)

It’s that time of year again! It’s the time when community organizations prove just how accountable we are to the public… even if it kills us.

For those of you who may not be “in the know” or in the thick of it, the fiscal year is over and all (Canadian) AIDS organizations must complete a rather daunting reporting process to the federal government known as PERT through an online application called PDCAS. My motivation for taking a break from this very process to write about this seemingly boring subject is two-fold:

1. I want the world to know just how hard publicly-funded community organizations have to work in order to be able to provide the programs and services that improve our society and enhance public health and;

2. I want to share the process AIDS New Brunswick uses to track our activities throughout the year with our comrades on the front-lines in hopes that we can collectively reduce the burden of such stringent reporting requirements and get back to the important work we do more quickly.

First: an introduction

All AIDS Organizations are required to report all activities and outcomes to the Public Health Agency of Canada each year. Accountability to public dollars is absolutely crucial and in theory the reporting process is great; the practice and reality that many organizations will attest to is cumbersome, time-consuming and frustrating. Boo hoo right? The issue here is that when an organization is engaged in this process, it can cost thousands of dollars in labour. The actual reporting is the tip of the iceberg. These details need to be tracked throughout the year. Activities need to be evaluated. Clients and the public need to be surveyed. Demographics need to be drilled-down. Cash-flow needs to be reported. Forms need to be processed. And this all has to be rolled-up and described in a report to the Federal government. This is besides the application process that we have to go through every one or two years (an article for another time perhaps). So in a nutshell, A LOT goes into these reports, making these agencies some of the most accountable but overly bureaucratized in the country.

HELP DOROTHY! WE’RE BEING TEXTUALLY MEDIATED!

We want publicly funded projects to be accountable to the public. Absolutely. Heck! we want to brag about all the great things we are able to accomplish with very limited resources. Community organizations however do not have the budgets to develop and maintain sophisticated databases that can feed into the indicators established by our federal funders. Don’t forget, we have to report to ALL of our funders, as well as promote our success to the public, not just the federal government.

At the end of the day, monitoring, tracking, analyzing and reporting is extremely taxing on an agency. The upside is that we are provided an excellent basis for measuring our success. The downside is that agencies aren’t provided the resources, training or tools to efficiently track and analyze the data and are given 30 days out of the year to input the data into the PHAC database. There has got to be a better way!

How do we do it?

I’m not sure how other agencies do it but historically AIDS New Brunswick would track every activity we did in individual binders. Basically we were the equivalent of the guy in the Heritage commercial who climbed the ladder to retrieve the ball after each basket. “Why don’t we cut the bottom out of the basket”? “But I need these baskets back”. Every six months staff and volunteers would go through their binders and calendars and try to ensure everything was captured. Every time our InfoLine rings - record it. Every time we set up an Information Kiosk – record it. Every time we do a workshop, presentation, community event, hand out a pamphlet or condom – record it…in detail: who did it, when did it happen, number of people reached, their demographic make up, evaluations received, will they change their behaviour, did they learn anything, do they care more now, etc. All of this. On paper. All over the office. It was a nightmare to track, let alone roll-up the data.

In early 2010 we developed a makeshift database through Google forms and using the PDCAS system as our framework. It wasn’t perfect but we were able to input information as it happened, centrally. The roll-up at reporting time was less painful. It saved time and was more accurate. It’s free and relatively easy to setup. What it did lack was the ability to connect related records and produce reports. For example we couldn’t connect a teacher or facilitator’s contact with an outreach record, or a journalist with a media record.

Everything is connected, everything is social

While using the makeshift database powered by Google Apps we were searching for tools that would enhance our ability to track our work and collaborate across program areas. After exploring a number of open source or free options and a failed attempt at developing a Microsoft Access database from scratch (it was just too time consuming), we were introduced to Salesforce.com. With a small amount of scratch from the Public Health Agency and a donation from the Salesforce Foundation we were able to develop and deploy a relational database for the 2011-2012 fiscal year. This system has allowed us to monitor and measure all of our activities in a very collaborative and social way. We have developed reports based on our reporting requirements that are now generated with the click of a button. Everything is tracked as it happens and stored in one central location. It can be viewed at anytime from anywhere.

Value of and beyond reporting

So it’s easier to report. That saves us at least a week of torment trying to fulfill our reporting requirements. That translates into thousands of dollars in labour costs, which in and of itself is a major coup. But there is more.

Anyone who has worked in a community organization or a social movement knows how easy it is to become burnt out by it all. Our goals are massive, lofty, long-range, difficult to measure and rarely do we see the results of our efforts. It can easily feel like we have accomplished nothing. All of our efforts and resources thrown into the big black abyss of “The FIght Against HIV”, “Gender Equality”, “Environmentalism”, etc. We know our activities are contributing to our bottom-line. Research tells us they will. But we don’t see those results for years or sometimes generations.

In our world, we don’t do it for the money. We do it for the intrinsic reward. The reward is in knowing we are making a positive difference in someone’s life or in our world. It’s hard to stay motivated when you don’t see it. With Saesforce.com we are able to see results in real time. We establish goals, set the success indicator and watch our progress, as we all contribute to the end result of reducing the spread of HIV and STIs in New Brunswick. We have real numbers to brag about. We have less anxiety about capturing our work. We can justify our existence and evaluate our activities. We stay in touch and share through Chatter. It has improved our ability to work where and when we are most productive.

For us, Salesforce is equal parts reporting tool and motivational tool. Now if we could only feed our data directly into the Public Health Agency’s reporting tool…

How does your agency manage its reporting requirements? Do you have any helpful tips for other #HIVCan agencies out there? 

This article first appeared in the blog of AIDS new Brunswick. Learn more about them here.  

Enjoying the nice warm weather we had recently, a colleague and I headed out for an evening beer on a patio.  My colleague informed me that tonight she and her husband would be meeting their new neighbours. “What are you going to tell them you do for a living?” I asked.

It’s THE question to ask when you’re meeting someone new.  It is a difficult question for a lot of people to answer. When I was growing up, my father was an independent agricultural market analyst & strategist. Try explaining that to the kids at age 8.  I myself have rarely found myself in positions where my job is easy to explain. For example, when I was getting my Masters degree in Sociology, I often had to explain that no, Sociology is not psychology, no I am not secretly analyzing you, and no, being a graduate student does mean I am an unemployed recent graduate. 

But being in the HIV & AIDS field is a whole other ballgame, because people are really ignorant on the issues, and where ignorance looms, so does stigma.  You’re never quite sure when it’s going to make an appearance.

When I was signing the lease to my new house, I received the inevitable question from my landlord - “what do you do for a living?” I knew it was coming and I had been worrying about how to answer this question. I feared that my landlord would be totally ignorant of HIV transmission methods and would have concerns that I could potentially infect him through using the toilet or you know, breathing in his house.

Even if you don’t encounter stigma, educating people can be plain exhausting. Usually you get one of two responses: complete silence, or a barrage of questions. Sometimes silence, although annoying, can be somewhat relieving. You may remember from my post Living in Two Worlds what it’s like when you’re trying to have a beer but end up lecturing someone on the difference between HIV and AIDS: 

"I am happy to educate people and hope that it does some good. I’m a patient person. But I usually end up secretly wanting to smack someone, especially when their queries have subtle or not-so-subtle undertones of a judgemental attitude - or are just plain stupid. And I often end up wishing for an opportunity to drink my beer without having to explain how HIV is transmitted, or what the difference is between HIV & AIDS, or, as was in the case last week, that my – or anyone else’s - sero-status is none of their business."

I know some people who lie outright about what they do. At a vicarious trauma workshop I heard of one woman who tells people she works in “manufacturing.” Another said she calls herself a dog groomer.

So, my colleague and I hatched a plan to help her avoid having to talk about injection drug use over cocktails. Mostly it involved being honest but vague, by using broad terms like “youth” “outreach” “education” and “blood-borne diseases”.

I deduced my own plan of what to say, too. Borrowing from terms I used when I worked in a hospital, I have now prepared the following script:  I’m in health care. What field? Psycho-social. Where? At a private clinic. 

Okay. So it’s not really the truth but frankly, it’s close enough.

I actually used this on the weekend. When my teardrop-tattooed, 6ft 6”, all-muscle mover asked me what I did for a living, I used the “I work in health care in a private clinic” line. No further questions. Done. Believe me, I did not want to get into the HIV transmission discussion in that moment.

Am I contributing to stigma by not telling people what I do?  Maybe. But in the defence of myself and others who may lie, we talk about the issues all day long and almost ceaselessly put ourselves in the role of advocates and educators. Our work doesn’t end at 5:00; it continues at the salon, the hairdresser, the dentist’s office, the auto-body shop (yeah, that one was a doozy), the bar and at the gym, and on Facebook, Facebook, Facebook.

When you work in an ASO, you don’t have to have HIV to be the recipient of stigma. Sure, many times people make assumptions that I am HIV negative because I’m a young woman, but they may easily assume I am HIV positive, and thanks to the aforementioned ignorance and stigma, that makes me fear discrimination in housing and other areas. So between fearing discrimination and simply needing a break from the role of an educator, maybe a little white lie once in a while doesn’t hurt.

Miss Universe, Miss USA, Miss Photogenic, Miss Congeniality (and you thought it was just a movie?)  - all around the globe there exists contests in which women fight to be crowned the winner. While all of them certainly include questions about goals, education, and passions it’s alarmingly evident that it’s still a beauty contest when you watch their swimsuit and evening-wear segments.  Particularly in the televised pageants, there is, at best, a cursory examination of a contestant’s educational and humanitarian qualifications.  In fact, when you look at the categories, there is one-thing that stands out, over two thirds of a contestant’s score is appearance driven.

The trans community as a whole struggles against society’s narrow definition of what is acceptable and what is beautiful. Particularly in North America, the trans community is very vocal in saying that acceptance of one’s gender does not depend on one’s body and how it looks. Why then, is our community rallying around and supporting the inclusion of a trans woman in a contest in which two thirds of the contestant’s score is appearance based; a contest that enforces a narrow and generally unobtainable standard of beauty.

From bleaching one’s hair to obtain that perfect platinum blonde shade all the way to the ravages of anorexia and bulimia, it’s hard to argue that society’s obsession with beauty and the attainment of it, for some women, has become an unhealthy and dangerous obsession.  Reports in the news and scientific journals of girls as young as 11 years of age dieting in order to maintain an appearance they believe men want; the kind of appearance that leads to an average industry weight somewhere around 120lbs for a woman approximately 5’8”. While the Body Mass Index scale has been said to be of limited value, a woman who is of the weight and height stated here has a BMI scale of 18.2, a number that would mark her as underweight.

Why does this concern me; you may ask. After all, haven’t I walked away entirely from the pressures put on me by the beauty industry? Indeed, since my transition, I’ve been fortunate to be able to not have to worry if my makeup is on right, if my hair and breasts are displayed just so or if I’m slim enough to be noticed. That said, I still have female bodied, female identified friends who have to contend with the images they are bombarded with every day about what kind of appearance is acceptable from women and what is not. These kinds of standards are driven by the beauty industry and reinforced using beauty pageants. Standards that I believe are harmful to women of all biological configurations.

Historically the transgender community has fought not just for acceptance, but acceptance based on more than just physical appearance. Whether you have transwomen who should be accepted as women regardless of their physiology or transmen who should not be classed as lesbians simply because of how they dress, one of the primary messages the trans community wants heard is that looks aren’t everything.  A message that seems to be the very antithesis of the appearance based message that these pageants promote.

While no one should be denied entry into something based solely on their birth sex, I have to wonder what kind of message our community is sending out when we blindly support the kind of activities in which looks are the chief reason for its existence.