More to Me Than HIV

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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           Read more

More to Me Than HIV: GScene post 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 Read more

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 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, Read more

AIDS

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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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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Gscene piece: November 2016

th-1In my last column, I wrote about how their has been a steady change in segregation in the gay bars and clubs, with a younger generation seeing men only/women only places as a relic from the past. Although there will always be a need (I think) for some kind of segregation, we certainly have come a long way from the time I remember back in the 1980s, I can clearly remember some men being mortified if a woman wandered into their watering-hole and out would come the vile, flippant  misogynist comment from some of the older gay men, with their description of lesbian’s as well, I’ll reinterpret the vile line as, ‘fruits de la mer’. There was also a pub in Hove tried to implement a policy were women were only allowed if they were accompanied by a gay man.
It would take the catastrophic horrors of AIDS to bring these two communities together which was recalled in the amazing documentary, We Were Here, about the arrival of the AIDS Epidemic in the USA. With an urgent need for blood transfusions, lesbians in California garnered themselves together and gave blood. Here in the UK, I remember many lesbians came forward to volunteer in any way they could to support the gay men who were suffering in large numbers to the horrifying effects of AIDS; along with an onslaught of hatred and stigma from the tabloid press which fed in to the fear and anxiety of the wider public.th-2Thirty-four years on since, Terry Higgins, one of the first people to die from AIDS, we really have come along way with anti-retroviral treatments. The divisions within the LGBT community has shrunk considerably and when we work together we achieve amazing things as we will once again witness on December 1st, World AIDS Day. Unfortunately there is so much more to be done to tackle the stigma of living with an HIV+ diagnoses, particularly with HIV positive and HIV negative gay men.
For me, this issue has been brought sharply into focus with the increase of HIV+ dating apps. I really understand the need for such apps which allow HIV+ people to feel comfortable about their HIV+ status without fear of stigma or abuse but we are living in a time when we have a real opportunity to eradicate HIV through use of condoms, antiretroviral drugs, PrEP and a heavy dose of compassion.
HIV+ stigma seriously needs stamping out if we are to reach a time when HIV is assigned to the history books.
THT have been running a brilliant advertisement campaign, It Starts With Me, urging every sexually active individual to take responsibility for their own sexual health. Together as a community we can make a positive difference, if people change their negative attitude about those living with an HIV+ diagnose.
So from today let’s do that, let’s take responsibility for not only our individual sexual health, but start treating everyone with respect, regardless of their HIV status.

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Brighton: The Graphic Novel, Part Two

 

Th eBrighton Writer's story board

Th eBrighton Writer’s story boardQueenSpark Books: Graphic Novel. (A shameless post Christmas plug).

Brighton: a Graphic Novel is turning out to be one of QueenSpark Books best sellers of 2013 and looks to continue to do so as we enter 2014.PTDC0002

With this in mind, The Brighton Writer invites you to take another peep behind his involvement in the process along with the extremely talented artists, Emilie Majarian  and Collette Tarbuck.

Having interviewed the main drag artists David Raven, aka Maisie Trollette Dave Lynn and Stephen Richards aka Lola Lasagne (see previous blog)  The Brighton Writer set about interviewing other key players who would become part of the projects storyline.

As HIV and AIDS has had such a devastating effect on many of those within the LGBT community, The Brighton writer felt it important to include this era within the storyline. With this in mind, The Brighton writer got in touch with local artist/sculpture, Romany Mark Bruce, James Ledward (Gscene) and Paul Elgood (Rainbow Fund); who collectively enabled the development and construction of Brighton’s AIDS memorial. From their feedback The Brighton writer was able to find out that the AIDS memorial project faced a fair few hurdles, including protests that fundraising for the project would take away funds from other local HIV health care. This issue was quickly resolved by Paul Elgood and James Ledward’s reassurance that all fundraising for the AIDS memorial would be raised through individual and business private backers.) Romany also worked for two years on the project free of charge, allowing all funds raised to go towards the completion of the AIDS memorial project.

One of the other major problems Romany faced was having the 11ft clay structure collapse while he was working on it, forcing him to begin the project all over again. This storyline gave The Brighton Writer the perfect opportunity to combine the ‘Brighton Angels’ alongside Romany’s journey in the construction and unveiling of the AIDS memorial By David Furnish.

Part way through, the clay structure collapsed on top of Romany mark Bruce

Part way through, the clay structure collapsed on top of Romany mark Bruce

 

Romany Mark Bruce

 

The middle section of my storyline was used as a vehicle to not only to introduce some of the other well-known faces from the Brighton scene but also allowing me to promote some of the LGBT projects they have been involved in. The main bases of the storyline was to introduce James Ledward and The Golden Handbag Awards; a project that give the LGBT community an opportunity to celebrate individuals and groups achievements from the previous 12 months. Within the storyline I also included Stephanie Starlet, who had led the march for Stomp out Stigma campaign, as part of LGBT mental health group, MindOut. Unfortunately this piece of information hit the editing floor, so I have included it here.

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PTDC0037The other well-known face on the scene I included was Ant Howells; partly for his longstanding involvement with the Sussex Beacon fundraising/social group, Bear-Patrol, as well as his involvement with HIV groups like Act-Up who were an extremely important campaign group who helped bring the plight of those living with HIV/dying from AIDS.

Jason Sutton aka Miss Jason and Poo-la-May also appear allowing me to mention one of Brighton’s oldest and perhaps most infamous gay pubs, The Bulldog and Club Revenge; both venues would be instrumental in development of the Gay Village in Brighton as we know it today.

The final story from the trilogy tells the story of Brighton’s Hankie Quilt Project. At the time of researching varies ideas for the final tale, I was introduced to Maurice Mchale Parry, who along with Peter Moxom, revived the idea of the the Names Quilt Project, through the Hankie Quilt Project, inspired by the 25th anniversary of the Names Quilt Project. Both projects have great strength in their simplicity by inviting people who had lost friends, loveres, family members to AIDS, to sew their name onto a piece of fabric, which in turn made up a quilt of many names, memories and love.

 

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The piece couldn’t be finish without a mention of Brighton’s Lesbian, Gay, Bisexual, Trans, Pride. From a few of us gathering in Queens Park to protest about the Consecrative Parties legislation, Clause 28, which effectively stopped school teachers discussing homosexuality with their pupils, leaving many young LGBTQ people unsure about how they were feeling, and without any knowledge of who to turn to for help. Since then, Brighton Pride has become an extremely important date in many LGBTQ people’s diaries, not only as time to celebrate, but to also remember their are still many counties whose anti-LGBTQ laws are causing misery and oppression and that will always be the main driving force for the visibility of Brighton Pride as we all protest and celebrate and party on down for future generations to come who will in turn leave their own mark and become part of Brighton’s unique history. The final panel had originally been designed with a host of volunteer groups from the LGBT community being represented. It was with regret that this grand scene was also to hit the editing floor, but the prominence of the AIDS quilt, the main players and one of Brighton’s most iconic tourists attractions, The Royal Pavilion helped frame this important slice of Brighton’s history.Final splash page, all the main players come together.

 

 

 

 

One more thing, check out the brilliant animation from Angie Thomas, who has brought the whole project to life.

http://www.angiethomas.co.uk/portfolio/brighton-the-graphic-novel

queensparkbooks.org.uk

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Remembering….

Maurice, Ann and Peter, Hankie Quilt Project

 

Today I saw a message on Facebook from Maurice, one of the founders of the Hankie Quilt Project, reminding us that it has been a year since the launch of this brilliant idea. HIV isn’t just about on World AIDS Day, it’s here 365 days of the year, and so are the memories of the people we have all lost to AIDS; here is my memory of one of those people, my lovely friend, M.

When I was twenty years old, I ran away to sea; well I got a job on the newly refurbished QE2 and2013-04-24 13.09.20

joined the ship in Germany. On my first, night, while sharing a small cabin with three straight men, I began to wonder if I was the only gay on board, when I heard someone shout, “M’s in the corridor and he’s wearing a dress!” My heart leapt as I ran out to see my saviour in sequins!

M and I became friends instantly and I quickly packed my belongings and swapped cabins with a straight guy (both of us were greatly relived) and moved in with M and two other gay men.

Apart from having to wake up in shifts to shower and avoid any squabbles over the one mirror in the cabin, sharing that cramped space was filled with much fun and laughter.

During our time at sea, M said he wanted to put together a drag revue show for the staff party. M’s passion for the show saw him enrol our cabin mates and we became The Ruby Sisters. M was the type of person who made things happen; he gained us a budget for our drag and wigs (which we bought in New York) had our dance routine put together by two of the women from the Peter Gordino dance troupe and our wigs where back combed to heavenly heights and make-up thickly applied by the prestigious Steiner Salon hairdressers/beauticians.

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The show went down so well, we were asked to perform it again that same night for the customers. Just as we had brought the house down for the staff do, as we came dancing down the sweeping stair case to “We Are What We Are”, the effect was even greater when our customers suddenly twigged that their professional stewards, who had given them a five star service in the restaurant for breakfast, lunch, afternoon tea and dinner, were now transformed into glamorous drag queens. The show was such a successes, that we performed it for next few transatlantic crossings.

M and I worked together, played together and shared a cabin 24/7 for eight months, then we both came back to dry land. M and I stayed very close, with me visiting him in London or him coming down for a weekend in Brighton and even doing a few ad-hoc shows for friends and one memorable alcohol fuelled show in a London bar.

The months flew by with so many laughs and boozy nights out, we thought it would be like that forever; then one day I had a call to say that M had been taken ill.

AIDS swallowed M too quickly. Within a month he was taken into the Mildmay Hospital. M was defiant to the end, propped up in bed, cigarette poised just above his left shoulder, delivering his ever cutting wit, but it was obvious I would never see him alive again.

At his funeral he had a flower tribute of the QE2 on his coffin and a pair of red high heels, while his favourite song, ‘Cabaret’ played as his body  was brought in.

Even after all these years I still miss M a lot. I guess I just want to say. ‘Thank you’ to Maurice and Peter for creating the Hankie Quilt Project, it has been a privilege to make a panel for M, a lovely, lovely, man who will never be forgotten.  

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Ground Level Gay Pioneers

Last month I had the privilege of being involved with a project run by City Books, who have been getting the town to read the 1950’s Brighton based novel: My Policeman, By Bethan Roberts. The story explores a time and place where many gay men lived in fear of arrest or persecution for loving someone of the same sex. Read more

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Return of the Names Quilt Project

Return of the Names Project.

Back in 1985 a man called Cleve Jones, was marching with hundreds of other people during a candlelit vigil. The March was in remembrance of the assignation of Harvey Milk. Through the 1970’s, Milk had campaigned for LGBT right in San Francisco. His campaign led him to be the first openly gay man to be elected into public office where he won a seat on the San Francisco Board of Supervisors.  Milks career was cut short when he, along with San Francisco’s Mayor George Moscone where both shot dead by Dan White, another Supervisor who had recently resigned from his job.

Read more

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Church of the Poisoned Mind

Throughout the 1980’s schools were gagged from talking about homosexuality by the Conservative Government’s hated Clause 28. Fast forward to what many of us would like to think are enlightened times, with Clause 28 consigned to the history books and our knowledge of how HIV can be prevented through education and safer sex. David Cameron has apologised for the way the conservatives dealt with these issues in the past and now schools are legally obliged to condemn discrimination on the grounds of sexual-orientation, although there is still a long way to go with many schools not discussing enough but the issues of safer sex. However, last year Pope Benedict XVI has pulled off his blinkers to the AIDS crises and said that in exceptional circumstances, (male prostitutes ) condoms can be used. Hearing these things from such high power, one could almost believe things are getting better, but a report in the news recently has shown there are still those intent on peddling untruths and causing as much damage as they can with views on homosexuality. Last week it was reported that a US preacher has visited Catholic schools and peddling outdated hatred by distributing a booklet called: Pure Manhood: How to become the man God wants you to be. Within the pages the booklet suggest that feeling of homosexuality is a disorder against Gods wishes and that homosexual feelings in adolescence men may be a reaction to an unhealthy relationship with the young person’s father, an inability to relate to other young men, or even sexual abuse. The book goes on to say that “scientifically speaking, safe sex is a joke”. Returning to Cameron and his rousing words at the time of the last election promising that his government would be a fairer, inclusive Britain; it would be hoped that he would step up to the plate and condemn these preacher’s words and ban him from peddling such hatred in schools. After all, we have seen just how fiercely he has come down on other preachers who peddle hatred with the likes of Abu Qatada under house arrest with the backroom boys working day and night to have him extradited. But unsurprisingly Cameron’s government have proven they are as eager as ever to continue discriminating as they have always done with education secretary Michael Gove saying, “The education provisions of the Equality Act 2010 which prohibit discrimination against individuals based on their protected characteristics (including their sexual orientation) do not extend to the content of the curriculum. Any materials used in sex and relationship education lessons, therefore, will not be subject to the discrimination provisions of the act.” A further statement from the Department for Education added, “Any school engaging in the promotion of homophobic material would be acting unlawfully.” But the row highlights a grey area over the teaching of sex education. A review intended to offer new guidelines on what was right for schools to teach was kicked into the long grass when the last election was called.” This in other words translates that the government don’t see this as a vote winner and hope that the issue will get pushed aside, even though chief executive Ben Summerskill has said, “It would certainly be helpful if there was clarity as to what is appropriate for young people of all ages, the water could no longer be muddied by people pushing age-inappropriate sex material on the one hand and fundamentalist anti-gay religious materials on the other.” Church leaders are continuing to bemoan that their views are being marginalised. Perhaps for one moment the likes of the former archbishop of Canterbury, Lord Carey should take a look at how his religion is being used to frighten, misinform and ruin lives and then take stock at how the Christian faith can be used for the better and not hate.

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Provocative, inspirational, genius: Robert Mapplethorpe 1946-1989

Robert Mapplethorpe was born on long island, received a B.F.A From Brooklyn were he was experimenting with varies types of art, but at this stage photography was not his primary passion. It was only later when he stated using a Polaroid instamatic, taking images of his friends and family that he would turn his attention to this art form and push the boundaries and become known for his more notorious photography. The very foundations of the art institutions would be rocked as Mapplethorpe presented work that for many was simply pornographic. But it was Mapplethorpe’s eye for light and shade that made the viewer see the artistic touch within these raw images that represented the underground sadomasochism New York club scene that Mapplethorpe so loved and from that he showed beauty within the darkness.

In his interviews he claimed not to want to shock, but by mixing images such as Louise Bougeois, renowned French-american artist and sculptor with a unfeasible large sex toy says he knew exactly how to play the media game, ensuring he quickly became established as someone to watch out for.

As his career continued, Mapplethorpe played with different styles and images, moving from the shock value of the S and M scene, to portraits of the famous, to flowers.It was even with this subject that he managed to bring erotica into the frame with their suggestive protruding pistol and feminine genital shaped curves. The way he captures their form is stunning, taking the way he uses his human subjects and applying that to the flowers, using isolation of the image, making the viewer take note of the light and shade, the shadows and shapes that are thrown up.

As beautiful as these well crafted images are, Mapplethorpe insisted that this type of work was done as a way of paying for projects, he was really interested in. He also added that the flower projects were the only type of his art that would be allowed in public galleries.

Had he lived, he would have smiled to see that his work that was once seen as too controversial would now be hailed as way before his time.  Like Artist before him, Mapplethorpe pushed the boundaries, making images in art and media move forward, which can only be a good thing. What I finally want to say about this man is no matter what your view on him you must have some admiration, no matter how small that he would make you stop and think about his work, be it showing you beauty in the image of celebrities, flowers or exploring extreme sexual images and near the end of his life taking hard to view images of himself finally losing the battle to AIDS which stole away a great artist of our time.

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