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More to Me Than HIV

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Combating Stigma: More To Me Than HIV.

First published in Gscene Aug 2020

More to Me Than HIV is a project that aims to breakdown the stigma that has historically been attached to this virus. 

When I saw my piece in last months Gscene to promote the More to Me Than HIV project, I was extremely proud, but a small part of me was filled with anxiety; but why should I feel this way? I have been on effective antiretroviral therapy since the early 1990s, but having lived through the period before there was any treatment, watching friends die of AIDS, or from the toxicity of early medication AZT, those memories of uncertainty can still creep in and unnerve. 

With this in mind, I can imagine that for the group of people who HIV has not had a significant impact on their lives, when they hear the words HIV or AIDS they will recall the time when the only information out there was AIDS = Death, which was only compounded by the tabloid press who went above and beyond in spreading misinformation about how HIV could be transmitted. Perhaps because HIV is not part of their lives, this is their recall on what HIV is still about. It is this misunderstanding that perpetuates HIV stigma and one that needs to stamped out with re-education. 

The one thing that stops many people being open about their HIV status is the stigma, stigma that comes from outdated ideas about what HIV is and how it can be passed on. 

Let me make this perfectly clear, people living with an HIV+ diagnoses who are on an effective antiretroviral therapy cannot pass the virus on, put simply: Undetectable = Untransmittable.

People living with HIV, on effective treatment can expect to get older and get on with living their lives. Not that living with HIV doesn’t have a whole set of challenges, but having an HIV diagnoses should not be the defining thing about us, we are so much more than those three little letters and that is what is at the core of this project. 

We understand that to speak openly about our HIV+ status may be an uncomfortable step to make, but it is through this project we feel we can break down the stigma associated with HIV by showing that we are not ashamed by our status, it is something we live with but that is not a label that defines who we are. Through this photo project we will show that we are: determined, resilient, funny and capable, we are chefs, beauticians, builders, mother’s, fathers, grandparents, artists, listeners, musicians, carers, writers and so the list goes on. So for those living with HIV, we ask you to show us who you are beyond your HIV status; check out the website moretomethanhiv.life, upload three photos, one portrait of yourself and two photos that show another part of what make you, you, along with three, positive, descriptive words. Together we can combat HIV+ stigma and resign it to the history books where it belongs.

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More to Me Than HIV

First published in Gscene July 2020

For last years World AIDS Day I put together a public project of work joining other people living with an HIV+ diagnoses at Jubilee library.For last years World AIDS Day I put together a public project of work joining other people living with an HIV+ diagnoses at Jubilee library.

For the project I spoke openly about my journey having being             diagnosed HIV+ 32 years previous. Back then there was no treatment and a lot of fear and misinformation concerning how HIV was transmitted. As such stigma was rife, which caused me to not be vocal about my status outside of the safety of those HIV+ forums and groups.

I felt empowered by talking about my own HIV+ status at my place of work and was moved by those who spoke so eloquently and openly about living with an HIV+ diagnoses. Straight after the project had finished, I knew I wanted to build on what we had collectively presented.

From here the same team came on board and collectively we have shaped this years visual presentation for World AIDS Day 2020.

The photo project is called, More to Me than HIV; it’s main purpose is to help breakdown the stigma that many people living with an HIV+ diagnoses experience. The project will culminate in an online public gallery as well as a physical exhibition of photographs at Jubilee library and a selection of branch libraries across Brighton and Hove who are supporting the project by allowing us to use the space free of charge

We are inviting people from all communities, gay, straight, BAME and transgender, who are living with HIV to submit three photos: one self portrait, (format, vertical), and two other photos (cropped, squared to fit beside your portrait photo) These two images must convey other aspects of what makes you, you; from a hobby, your career or passion.

Please send three empowering words to accompany the images. We will format and add these to the partite image. 

Submissions will be exhibited on our online public gallery, which we will launch a week before World AIDS Day as part of the national HIV+ testing week.

From these submissions we will choose a cross section of 30 entries to make up our libraries exhibition. When submitting your photos, there will be an option to opt out of this part of the project and to have your images online only. 

From the 30 entires we would like to invite you to write  300 words (100 words for each image) to give further context to the images and what it means then we say there’s more to me than HIV. 

The team behind the project understand there be a lot of questions  participants want to ask which we will strive to answer via the website, here are a few that may come to mind.

Can I be assured of confidentiality?

Yes, we live with or are affected by HIV ourselves and recognise the importance of confidentiality. For example, when you subscribe to our email list, you don’t have to give your name, we only use it to politely address you.

How do I submit photos, which format should I use and size?

Send your photos by email to the webpage address, there will also be easy to follow details of what format and size we would like you to use.

How do you approve images?

We reserve the right not to use images that break any UK law, contain any hateful or obscene content, or are too small to represent on our platform without distorting the image.

What if I don’t want to be identified?

We will not attach any name to the portraits for the project. You may choose not to show your whole face in the portraits, however, we would like to encourage you to combat stigma by being visible.

I’d like to take part, but I’m uneasy as I’m not out about my HIV Status?

We recognise that choosing when and who to disclose your his positive status to can be difficult, as we have been there ourselves. You may want to choose this project as part of your disclosure strategy to show others how diverse we are. Being pictured with others may be of comfort to you, as you are not alone. 

If you would like to speak to an HIV positive Peer Support Volunteer, the Sussex offers a one to one bespoke service to help you stand with you on your journey.

Our website will be updated throughout the project as more questions come in so please do check the website. We look forward to seeing your images as we all stand together and say, there is so much more to name than HIV.

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More to Me Than HIV: GScene post Aug 2020

thumbnail

More to Me Than HIV is a project that aims to breakdown the stigma that has historically been attached to this virus. 

When I saw my piece in last months Gscene to promote the More to Me Than HIV project, I was extremely proud, but a small part of me was filled with anxiety; but why should I feel this way? I have been on effective antiretroviral therapy since the early 1990s, but having lived through the period before there was any treatment, watching friends die of AIDS, or from the toxicity of early medication AZT, those memories of uncertainty can still creep in and unnerve. 
With this in mind, I can imagine that for the group of people who HIV has not had a significant impact on their lives, when they hear the words HIV or AIDS they will recall the time when the only information out there was AIDS = Death, which was only compo
unded by the tabloid press who went above and beyond in spreading misinformation about how HIV could be transmitted. Perhaps because HIV is not part of their lives, this is their recall on what HIV is still about. It is this misunderstanding that perpetuates HIV stigma and one that needs to stamped out with re-education.

The one thing that stops many people being open about their HIV status is the stigma,  stigma that comes from outdated ideas about what HIV is and how it can be passed on. 

Let me make this perfectly clear, people living with an HIV+ diagnoses who are on an effective antiretroviral therapy cannot pass the virus on, put simply: Undetectable = Untransmittable.

People living with HIV, on effective treatment can expect to get older and get on with living their lives. Not that living with HIV doesn’t have a whole set of challenges, but having an HIV diagnoses should not be the defining thing about us, we are so much more than those three little letters and that is what is at the core of this project. 

We understand that to speak openly about our HIV+ status may be an uncomfortable step to make, but it is through this project we feel we can break down the stigma associated with HIV by showing that we are not ashamed by our status, it is something we live with but that is not a label that defines who we are. Through this photo project we will show that we chefs, beauticians, builders, mother’s, fathers, grandparents, artists, listeners, carers, writers and so the list goes on. So for those living with HIV, we ask you to show us who you are beyond your HIV status; check out the website moretomethanhiv.life, upload three photos, one portrait of yourself and two photos that show another part of  what make you, you, along with three, positive, descriptive words. Together we can combat HIV+ stigma and resign it to the history books where it belongs.

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More to Me Than HIV: first published in GScene July 2020

thumbnailFor last years World AIDS Day I put together a public project of work joining other people living with an HIV+ diagnoses at Jubilee library.

For the project I spoke openly about my journey having being             diagnosed HIV+ 32 years previous. Back then there was no treatment and a lot of fear and misinformation concerning how HIV was transmitted. As such stigma was rife, which caused me to not be vocal about my status outside of the safety of those HIV+ forums and groups.

I felt empowered by talking about my own HIV+ status at my place of work and was moved by those who spoke so eloquently and openly about living with an HIV+ diagnoses. Straight after the project had     finished, I knew I wanted to build on what we had collectively           presented.

From here the same team came on board and collectively we have shaped this years visual presentation for World AIDS Day 2020.

The photo project is called, More to Me than HIV; it’s main purpose is to help breakdown the stigma that many people living with an HIV+ diagnoses experience. The project will culminate in an online public gallery as well as a physical exhibition of photographs at Jubilee library and a selection of branch libraries across Brighton and Hove who are supporting the project by allowing us to use the space free of charge

We are inviting people from all communities, gay, straight, BAME and transgender, who are living with HIV to submit three photos: one self portrait, (format, vertical), and two other photos (cropped, squared to fit beside your portrait photo) These two images must convey other aspects of what makes you, you; from a hobby, your career or passion.

Please send three empowering words to accompany the images. We will format and add these to the partite image. 

Submissions will be exhibited on our online public gallery, which we will launch a week before World AIDS Day as part of the national HIV+ testing week.

From these submissions we will choose a cross section of 30 entries to make up our libraries exhibition. When submitting your photos, there will be an option to opt out of this part of the project and to have your images online only. 

From the 30 entires we would like to invite you to write  300 words (100 words for each image) to give further context to the images and what it means then we say there’s more to me than HIV. 

The team behind the project understand there be a lot of questions  participants want to ask which we will strive to answer via the website, here are a few that may come to mind.

This part written by David Fray.

Can I be assured of confidentiality?

Yes, we live with or are affected by HIV ourselves and recognise the importance of confidentiality. For example, when you subscribe to our email list, you don’t have to give your name, we only use it to politely address you.

How do I submit photos, which format should I use and size?

Send your photos by email to the webpage address, there will also be easy to follow details of what format and size we would like you to use.

How do you approve images?

We reserve the right not to use images that break any UK law, contain any hateful or obscene content, or are too small to represent on our platform without distorting the image.

What if I don’t want to be identified?

We will not attach any name to the portraits for the project. You may choose not to show your whole face in the portraits, however, we would like to encourage you to combat stigma by being visible.

I’d like to take part, but I’m uneasy as I’m not out about my HIV 

status?

We recognise that choosing when and who to disclose your his positive status to can be difficult, as we have been there ourselves. You may want to choose this project as part of your disclosure strategy to show others how diverse we are. Being pictured with others may be of comfort to you, as you are not alone. 

If you would like to speak to an HIV positive Peer Support Volunteer, the Sussex offers a one to one bespoke service to help you stand with you on your journey.

Our website will be updated throughout the project as more questions come in so please do check the website. We look forward to seeing your images as we all stand together and say, there is so much more to name than HIV.

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More to Me Than HIV

 

thumbnailSoon after Brighton’s World AIDS day event in 2019, I began to format an idea in my head for World AIDS day 2020. Seeing how well the visual elements of the project had drawn people in I knew this had to be at the forefront of the next project and I wanted it to be a bold statement about what it meant to live with HIV today. I thought back to the time after I was diagnosed HIV and made the decision that I was going to be the boss to HIV and it would not dominate my thoughts. Of course there has been periods in my life when HIV has consumed my thoughts but it has never been the main part of who I am. From the start my idea was to create a portrait gallery consisting of three photos, one head shot of the person living with HIV along with two other photos that showed another side of that person away from HIV. From here I put together a team of people who had experience in the visual media and together we met at Jubilee Library to thrash out ideas: David, Jason, Malcolm, Frances and Ian. From the start the group talked about how this project will break down the stigma associated with HIV and how having positive images will go along way in doing this.

From here the very talented members of the group saw how this project could have a greater reach if a webpage was created were the volume of photos could be vastly increased. From here it was agreed that for the library project we would invite a cross section of people living with HIV to have the main photo taken by our photographer, Malcolm in Black and white, portraits always look better in black and white! along with the two ‘more to me’ photos in colour.

Unfortunately the Corona Virus has put a delay on the physical project being shown at Jubilee until later in 2021, but the online project (thank you David) has come on leaps and bounds as we use social media to get a greater reach. To see the project and how you may want to get involved if you too are living with HIV then please visit our website:

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World AIDS Day Event 2019

CF10EA0F-6CC9-4E72-AD82-DC10AE866B99_1_201_aIt was with some trepidation that I decided to put together a Project for World AIDS day at Jubilee library, my place of work. I knew from the onset that I wanted the event to be as visual as possible to get a bigger reach as possible. My thinking behind this had been that if someone saw a leaflet about HIV/AIDS most people who HIV was not part of their lives would walk by, but if there was something of visual interest to catch their eye, then a conversation could be built on from there. Eric Page organised to have the Brighton Hankie Quilt hung in the main window of the library, Romany Mark Bruce kindly loaned us a miniature replica of his famous AIDS memorial statue, Tay and the David Fray put together a video highlighting the history of the HIV/AIDS epidemic in Brighton, along with Romany’s journey in creating Tay. For my part I has intended to recreate a project that had run at Jubilee library before called, Living Library, where individuals living with HIV would sit in the library and members of the public could sit with them and hear their story. On the day my part of the event was set up in the Community Space at the back of the library along. Th space was set up for members of the public to join invited guests to talk about their experience of living with HIV.  On elf the star speakers on the day was a woman called Sue from Positive Voices. Sue spoke out positively about living with HIV in a way I knew I wanted too. I found the event very empowering, but knew I was still anxious about speaking openly about my HIV+ status. This become extremely apparent to me when a television reporter from Meridian TV asked if I would speak to the camera. I calmed up and became so unsure about myself, I was happy to spaek to the people who had come to the library, but could don’t bring myself to broadcast such news to a wider public. Thankfully one of the people who came and talked stepped in.

After the event I was so pleased with how collectively we had been part of the wider collective HIV organisations who put on events throughout Brighton to remind people that HIV is a still an issue that needs to be talked about.

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HIV Hero

First published in GScene Nov 2018

THINKING about the AIDS epidemic, many people who made a difference come to mind; from Graham Wilkinson (Sussex AIDS Centre), Father Marcus Riggs (Open Door), and London-based AIDS activist extraordinaire, Cass Mann.

Cass Mann was seen by some as a controversial in his views, particularly at the beginning of the AIDS epidemic, where he believed there were Kübler-Ross counsellors telling their HIV+/AIDS patients to prepare for their own imminent death. All of us who lived through this time can vouch for the fact that every week we heard that someone we knew had died. It was a scary time.

In response, Cass set up the organisation Positively Healthy, a title that would become a beaming light for many of those infected and affected by HIV/AIDS.

What you have to understand is that in the mid-1980s the only drug being offered to those living with HIV/AIDS was AZT which, for the majority of people, was too toxic and only hastened their demise. Again, Cass was vilified for saying as much about AZT. It was hard to hear as everyone was desperate for a cure to the nightmare.

Through Positively Healthy, Cass promoted an alternative to the acceptance that AIDS = Death Mantra and advocated a vegetarian diet, holistic therapy and most importantly for those diagnosed with HIV to change their mindset and say, ‘let’s live’. Of course, people still died from AIDS, but others began to realise that their doctor’s advice to “make the next six months count” may have been premature, AIDS didn’t always equal death.

Through his workshops in London, and the amazing week of discovery at Laurieston Hall, a setting that was perfect to spend a week away from the pubs and clubs and television. In Scotland, Cass provided a safe space for HIV+/- gay men to explore, discuss, scream and dance, perform, and be silly.

Many gay men who were part of Positively Healthy will remember just how positively healthy those sessions with Cass were. On the last night, the group would be led into the Scottish woods, where an amazing spiritual ritual allowed us all to let go of bad practices holding us back.

Not everyone agreed with Cass’s philosophy around HIV/AIDS, but It was his commitment to get the Positively Healthy ethos out to as many people as possible and, in turn, help save lives. Sadly, Cass died in April 2009 from Hodgkin’s lymphoma, but his message to live long and live well with an HIV+ diagnosis continues.

In his essay Deadly Counsels: The Necrophiliacs of AIDS, Cass says; “Only have in your life that which supports and celebrates your aims and purposes, and detach immediately from everything that doesn’t.” Wise words that we should all take notice of.

For me, Cass Mann is a much missed voice campaigning for all those touched by HIV and AIDS, so I’ll finish with one of my favourite quotes from Cass: “For all those who have condemned us to die, the following message: LIVING IS THE BEST REVENGE!” 

More information about Cars Mann: cassmannmemorial.wordpress.com

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Make the next five years count.

B12B22CB-90F0-4988-B414-808F27A4D418_1_201_aThursday 3rd March 1988, I was 23 years old and told I had been diagnosed HIV+ and to make the next five years count. The next few months were a bit of a blur. You see, back in 1988 HIV was a killer, there was no cure and if you got HIV then it was very likely it would  lead to AIDS and you would die. I knew this as a fact as many of the men on the gay scene who I knew were dying. At one point it was not unusual to hear of at least one person in my wider group of friends had died.

I knew I would have to tell my friends and decided to do it when my friends and I had a flat warming party. It made sense to me as I had everyone I loved in one place and felt we could all support each other. One by one a friend was asked to join me on the stairs in the hallway, I think I got drunk while my best mate mopped up the tears. 

A turning point came for me when soon after I was offered to go on a drugs trial, at this point I was showing no symptoms related to the unset of AIDS and so was eligible to go on the trial. I wanted to be one of those who could potentially help in finding a breakthrough. You see, only approved anti HIV medication at the time was a drug called AZT, but it was really toxic to those already ill with AIDS and so for many people it only hastened their death. So, it was and brainer to take part in the study.

I was told the group would be split into two, one would have the medication, the other would have a placebo. During the trial the doctor got very excited with my results, everything was improving. I was also getting some of the side effect associated with this medication as well. So it came as a huge surprise to both me and the doctor when at the end of the trial it was revealed that I was in the placebo group. 

I took this as a sign that I should do everything in my power to stay well, positive thinking was going to be the way forward. I know that in reality I had a lot of luck on my side too but I was determined not to die.

By the end of the decade AIDS eventually caught up with me, I remember one day feeling really ill, it hit me out of the blue. Soon after I started feeling a lump on the roof of my mouth, I convinced myself the lump had always been there, I was in such denial that I was even considering asking my friends if they too had a ridge on the roof of their mouth. However, the lump grew and I knew something wasn’t right but I really didn’t not want to admit it to myself let alone to tell anyone else, because to do so would be to admit that I was dying. So I went into total denial that this was happening to me and told no one. At first it was easy, then I began to lose my appetite and I lost a lot of weight. At first I was able to get away with it, I was even pleased that I could fit into a 30” moleskin pair of trousers. But then the weight kept coming off and I started to look ill but still I told no one.

Eventually a friend intervened and took me to Hove hospital where they had a specialist HIV/AIDS ward.

I was taken to a private room, two doctors came in, one shone a torch in my mouth and said, ‘Ah yes, KS classic kaposi’s sarcoma.’

Suddenly everything I was in denial about was laid out in front of me, getting a KS diagnose was defyining sign that you had moved on from having an HIV+ diagnoses to an AIDS diagnoses. Because of my denial I had not brought anything with me during my hospital stay, so my mate had to get the stuff for me.

I was in hospital for about a month while I was monitored, it was the build up to Christmas, which back then was not a favourite time of year, so I was pleased to be in that little private room, it even had an ensuite!  

When I was discharged I had a course of radiotherapy and the KS went. Everything was fine for a while then I got ill again and was taken back into hospital (this time I did not get the ensuite)! I knew I was very ill an invited my mates up to say my last goodbyes, I even planned what I wanted read at my funeral, a passage from the little prince, which ends:

 

‘Goodbye,’ said the fox. ‘And here is my secret, a very simple secret: It is only with the heart that one sees rightly; what is essential is invisible to the eye.’

I think I was determined that there should not be a dry eye at my funeral.

But then everything changed, a doctor came and spoke to me to say there had been a breakthrough with an antiviral medication. Through this combination therapy, six tablets twice a day I got better. Throughout the following decades I would get very ill and go back to hospital, but that determination that HIV/AIDS would not get the better of me gave me the determination to make everyday count. As the tattoos on my arm say, Carpe Diem and Memento Mori. 

moretomethanhiv.life

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In the beginning…

The way many of us saw the corona virus as something on the other side of the world, was how many of us in the UK saw the onslaught of HIV and AIDS. For me it was something that happened in Africa and America then we started to hear that gay men in London were falling ill. 

In Norwich, we were in a bubble, I can’t imagine anyone would be putting there hand up to say they had HIV. The reason why became very apparent when two gorgeous American solders came to the only gay club in town, and much to my shame none of us spoke to them, they just stood in the corner for a bit and eventually left.

Do You Understand?

I used to think that AIDS happed to
Africans and Americans
Well, that’s what I was led to believe
and with that knowledge I felt safe.

Do you Understand?

I heard that the plague was rife in London
so it was best for a provincial queen like me
to stay clear of any East End Rough

Do you Understand?

I once heard of a friend of a friend who
knew someone who had died of cancer
It was best not to call it AIDS

Do You Understand?

I’ve sat by the beds of friends who looked
starved and grey, who shit themselves and could
not tell me it hurt and degraded them

Do You Understand?

I heard today I’ve got five years to die
to join the statistics on some government list
I prepared to pack away my Go-Go Boots and fans

Do you understand?

Seven years on, I’ve still not gone, I’ve decided
not to take my doctors advice
I’ve kept my boots and fans, i’v decided  to give
death a miss, for a bit….and I’ll dance to
some HI-N-R-G song

Now, do you understand

written 1995

Do You Understand

 

 

 

 

 

 

 

 

 

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