Needless to say, I no longer work for the project in question, or indeed its creator.After careful consideration, I felt it appropriate to share with you exactly why I quit, and the events that followed.To understand it from my perspective, let me take you back to the day I was diagnosed.In the time that I had, which wasn’t long, to prepare myself for that, i went through 1001 different emotions. I tried to harden myself to it, and told myself, like the people around me that knew, there is treatment and its not the death sentence it used to be.
It wasn’t until I was walking home after I had been told I was positive, that it hit me.
The realisation that you are going to have to either, keep it like a dark secret that is festering to get out at any moment, you tell a few people that you feel ‘need’ to know, or, as I did, be open about it.
Either option you take, you have the fear of God inside you.
What is my mum going to say? What is my family going to think? What are my friends going to say?
I told very few people at the beginning, I needed time to get my own head around it. Unfortunately, the gossip machine that is the gay scene, took that time away from me. You assume you can trust someone, and then you get a call from your cousin to ask when you were going to tell her you had AIDS…you go out for a night out and you have people whispering and pointing.
Let’s not pretend I am as strong as I have had people think, because god knows, I was a wreck! I was drunk when i noticed people pointing and whispering, and there and then, in that moment, I decided that I had had enough! I refused to live like that, and my way of thinking about things is, if the source of information comes from you, they can’t gossip, things can’t be twisted…if i am as open as i possibly can be, i have protection from it.
So that’s what I did, and let me assure you, it hasn’t been easy! Being open, has left me to deal with nasty messages, rejection to my face in clubs and pubs, even people I go out with have things spread about them, even when its not true. I had to deal with a boyfriend being told, when i was standing right next to him “I think its wrong you can be with him, what if he gives it to you?!”
For me, its the mental impact HIV has, people reassure you about treatment, but they don’t think about the nights when you cry yourself to sleep because you will never feel like everyone else. They don’t think about the nights out when you see someone you like, and you cant even say hello, because you might end up liking him, and he will run a mile when he finds out. They don’t think about the fact that depression will hit you like a tonne of bricks in the face at random times and you feel like “what is the point” or “I just can’t do this any more, I am not strong enough!”
You think that is bad? Think again! I have had had it easy! People i have spoken to have been forced to move their life because of violence, abuse and people making their life hell. My first encounter with the virus was learning someone i had known nearly all my life committed suicide because of what he went through!
Don’t for a second think I tell you this for a sympathy vote. I tell you because that is the cold hard truth of it. I tell you because THAT is reality for most of the HIV people I know. That is the stigma we face.
Because of the way I have been treated I feel so strongly about this. I started my blog and have used Twitter and Facebook to promote my passion. Last October, I was followed on twitter by a HIV awareness project. I was intrigued, so I had a look through what it was all about. This seemed like it could be my beacon of hope in a sea of ignorance and hatred.
It was focused on a group of HIV+ people and their stories. To my surprise, I learnt that the person whose idea it was, wasn’t positive himself. He started it because he had an HIV scare and had the realisation that if he had contracted HIV, he would have to face the stigma associated with it.
The creator personally invited me to the opening of the exhibition. I was so excited about what its mission was, that I wrote a really positive review about the project, so people reading my blog would go and visit.
About a month later I was asked to become the Head of PR for the whole project. Naturally I was thrilled. I had such a massive hang up about the stigma that I jumped at the opportunity to be able to actually help change it. I really felt on top of the world.
After a couple of meetings with him, I agreed to work for the project for £3.75ph – well below minimum wage. Personally, that didn’t matter to me, it wasn’t about the money, it was about doing something that I believed could make a difference, and make the lives of people living with HIV just a little bit easier.
Initially, I wasn’t expecting it to be such hard work. On day one, from the moment I opened my eyes in the morning I was receiving emails and texts from this person. On several occasions I was still working until well after midnight. I felt that what I was doing was important, and I was prepared to give it my all, even when I was totally exhausted. I also realised that my full time job simply couldn’t be done whilst doing the work for the project, so, I made the decision to leave my job and focus on the project.
Then it started to get a bit too much. I would be getting emails at midnight, asking me to draft something or to look at something. From the second I opened my eyes to the minute i went to sleep, it was all about the project. There were times when I couldn’t reply immediately, and that is when I started receiving unpleasant emails from him.
Things were going OK, but cracks in the relationship between him and I started to appear. I was doing as much as I could, and was available most of the time. However, some the times I wasn’t, he started sending some emails that weren’t perhaps as pleasant as they could have been.
He even contacted me on Christmas day! I had made it no secret that it had been the first Christmas my whole family had spent together since 2006 and that time was very precious to me. Then to have my dedication to the project questioned was deeply upsetting.
On the 28th December, I travelled for 5 hours, to promote the project on BBC Three Counties Radio. I had had to borrow money to get there, and he assured me this money would be repaid immediately, as stated in my contract.
The live interview on BBC local radio was, as far as I was made aware, to have taken place with one of the participant of the project. 20 minutes before we were due on air I discovered that she would not be taking part. This was contrary to what I had been told. I was told by her that she had not received any confirmation of when she was to due to appear on the radio show.
When I texted him to explain the situation, he replied calling her stupid. This made me feel very shocked and I started to feel concerned.
This lady had done an interview with one of the biggest national newspapers to promote the Project. Questions started going around in my head. He had already told me that she wanted to talk about the loss of funding of a charity she works with, and the he didn’t want this to happen. I asked myself if he had deliberately not made her aware of the radio interview. Had he simply used her name to secure time on her local BBC radio station?
I did the interview on my own that day. I had been up since 5am, and had spent five hours travelling. I had gone past the point of exhaustion. This however, wasn’t my only work for the day. No sooner had I boarded the train home, he gave me a new list of things to do.
By the time I got home, I was so tired, that I was not able answer his emails and fell asleep.
I felt so good about what I had done that day, and was devastated the next day when I woke up to him once again, questioning my dedication to the project and questioning if I was the right person for the job. I thought i had always gone above and beyond the call of duty to perform and respond to his requests. I thought I was doing enough, more, on reflection, than perhaps I should have?
I decided to email him and explained how upset I was. At 9pm he asked me to Skype him to talk about it, and “clear the air”. Instead, I was questioned yet again.
Afterwards we spoke about the plans for the new year and about the extent of the information that was to be given to the public and participants. This included what we would and would not disclose to the individuals such as tour dates and the release of a DVD and book to accompany the tour.
Throughout my time on the project, the HIV+ people were my focus, and i was quickly starting to think, this wasn’t the case for the creator. When one of the participants dropped out of the project because she didn’t like the direction the project was going in and didn’t think it was achieving what it set out to do, he was quite unpleasant about her. She had shown such courage, and it was sad that he was so angry with her.
Throughout the time I worked with this man, his focus seemed to be less and less on the participants and more on himself. The project had rightly received so much publicity and was really starting to gain momentum. At this stage it seemed to me that he had forgotten the main reason for the project and had turned it into a personal ego boost for himself and he was now more focussed on making the project as big as possible for his own personal gains. I wondered if he had spared any time for the thoughts of the 30 HIV+ people that weren’t aware of his plans for their pictures and stories.
He told me of plans for a book and DVD of which he expected to make £10,000 and that he was trying to raise £7,500 online for the project. Nearly all our conversations centred around money and not the reason I initially got involved -HIV awareness. It was also never made clear whether any proceeds would go to HIV charities, the 30 participants or the organiser.
I asked whether the participants had given their permission for the tour. I was getting concerned about how big it was getting, and the impact it could have on them. A concern that was realised when one participant told him she didn’t feel comfortable with the exposure she was receiving from the exhibition.
For me, this was always at the forefront of my mind, and a concern I raised with Edo. Every time, his response was the same. He told me that they wanted to fight the stigma and if they dropped out, they were cowards. He said it was pathetic if they did. I was horrified. Each one had shown tremendous bravery by being open about their status not only to a few, but to the entire country! Nobody expected the project to get as big as it did. Does this make them cowards? I don’t think so.
With tensions at a high, I began to doubt the true motive of the project. I was starting to feel very stressed and growing increasingly concerned.
On New Year’s Day, I ignored emails from him for personal reasons and then, yet again, got another stream of emails, texts, calls and voice mails, being told he was sick of chasing me.
I had had enough! I was at the limit of what I could take. Wouldn’t you be?
I sent him an email. I told him that I was unhappy about the work he was expecting me to do, and that I was being subjected to unpleasant emails because I had been unavailable. Alarm bells started ringing in my mind. I started thinking, and realised something was very strange about the whole thing.
It was then, on the 2nd January, I decided to check if the £40.00 travel expenses had been transferred, as i had been told they had. I don’t know what made me check, but to my absolute horror, it hadn’t!
I contacted him immediately, and asked why he hadn’t transferred the money he had promised I was being ignored, and was then told he hadn’t received my emails. I knew that he had received them and, unbeknown to him, I had the email account open showing that he had just read them deleted them immediately. Surely this wasn’t right, I thought to myself. “What is really going on?”
This matter went on for several days, and I made so many attempts to sort it out. I didn’t want to believe he had ripped me off – that was the last thing I wanted to believe. So I asked him for the 32 hours i had worked on the project to be sorted to. I needed that money desperately. With no means to live, owing the money I had borrowed to travel, I was starting to worry I would never see it.
For many years I have suffered from anxiety attacks and the stress of this has brought it on again. I was confused, upset and bitterly disappointed. I got to the stage that I couldn’t cope with it any more so, I asked a friend to deal with the problems with him for me.
My friend, who is very level-headed and pragmatic contacted him, who was now ignoring my emails, and told him if the monies owed to me were not paid on time, he would be forced to take it further.
I couldn’t understand why this person was doing this to me. I had worked so hard for him, and was so dedicated to the project. I felt like he had used me. I had always thought he was a decent man, it was becoming clear to me that, I shouldn’t have trusted him.
My friend called him whilst I was there, asking why he had failed to pay me. Why he thought it was right to exploit my good will and passion for HIV awareness. My friend asked him if he had any intention of resolving it, and whether there was a way we could all move forwards.
He began laughing down the phone to my friend when he was asked if he thought what he was doing was right, he said it was a “free country” and he wasn’t going to pay me.
My friend then told him that he would be taken to court, again, he laughed and said he didn’t care.
I have never experienced someone being this callous before, with no guilt or responsibility for what they have really done. I have never felt so disappointed and let down in my life. How could this apparently honest and caring individual actually be like this?
In my opinion the man is a disgrace. He has exploited me and my good, trusting nature. He has shown that he is only involved in this project for one reason. It’s not the money that has got me down, I din’t do it for the money. What has got me down and made me really angry is the principal of it all.
I think it feels like he thinks it’s OK to use HIV to make money for himself, and not care who he tramples on along the way.
I trusted this person and was given comfort in the fact that The Terrence Higgins Trust openly supports it, which I now know to have been a lie from him, and have informed them of what has happened.
It makes me ask myself so many questions; Has he done this before? has he done this to anyone else? Is the HIV stigma simply a platform to launch or promote his photography career? Is it just for him to make money? What is being kept from the peoples whose lives have been impacted by his personal project? Who else’s lives has he affected in this way? Who else has subsidised his photography business in this manner? Who will be the next mug he tries to take for a ride?
This post had to be edited after this issue escalated to 3 months of anonymous bullying online that was discovered as being from this person. ‘Frank’s’ real name removed as he went to the police and attempted to have me arrested for exposing him to the public, claiming it was in fact now me harassing him.
Having known this person, I expected it fully, and a the call from the police was no surprise to me what so ever.