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  • Writer's picturePhilip Dehany

Attending the Fighting HIV Stigma, March, Vigil and Rally. Saturday 18th March 2023


The accompanying video to this blog can be found here:


On Saturday March 2023, I joined friends and allies from the HIV community as we marched from Waterloo to Trafalgar Square.


This was the first time I had taken part in a march, other that London Pride. It was a huge step for me, having only come out publicly as HIV+ in October 2022.



I remember once, shortly after being diagnosed as HIV+ in May 2016, I tentatively attended a rally outside the Department of Health, where campaigners gathered in an effort to make PrEP available on the NHS.

Organised by ACT UP London, I Want Prep Now, National AIDS Trust, Terence Higgins Trust, Out and Proud Diamond Group. They wanted to see PrEP rolled out nationally by the NHS, and not restricted to postcode lottery provisions.


As I approached the assembly point I remember feeling nervous, that I might be seen by someone I knew.


I was diagnosed as HIV+ at on 21st May 2016, during a routine sexual health screening at Dean Street Express. As a sexually active gay man living in London, I got tested every 3 to 6 months, depending on how sexually active I had been that month.


The tests were always nerve wracking, as you just never know if it [HIV] is going to catch up with you. I had sex with people I knew, and some that I didn’t. I sometimes used condoms, but not always. I knew about HIV. I had friends who were HIV+. I even knew about PrEP, and PEP, but hadn’t really considered it enough to protect myself.


There is more to it than this, but that’s for another blog, another time.


The point is, I was diagnosed and put on effective medication immediately and was declared undetectable within a month. I had told my close friends and my parents the weekend that I had found out, and that was pretty much it. My life went on.


It was on 7th July 2016, about six weeks after my diagnosis that I heard about a protest that was taking place outside the Department of Health in Whitehall.



I can’t remember how I came to hear about it, and I didn’t know anyone else who was attending it, but I was curious and made my way down.


It might surprise some people but despite plastering myself all over social media and YouTube in stories and vlogs, I am actually quite shy, especially around people I don’t know or have just met. I will often hang back quietly and not make myself known.


This was one of those circumstances. But as well as feeling shy, I was afraid. I was worried that people might see me at a HIV protest, and find out my secret. I was worried about the cameras taking photos, where they might appear and who might see them.


Despite my trepidation, I couldn’t help but get swept up by the energy and atmosphere. People had made banners, and posters that they were sharing and handing out. People were laughing and talking. Everyone was so friendly and kind. One women, I remember, came over to me and asked me if I was alright. She could probably sense I was nervous. She gave me a hug, and tore off a red strip of fabric that she along with everyone else was wearing. I took the fabric and tied it around my head like Rambo’s headband. Another person gave me banner and asked if I wanted to hold it.


It felt like armour. Armour that at first, I was hiding behind, but that then gave me strength and confidence. As Dan Glass, an activist I had followed on Facebook began speaking into the microphone, I moved to the front to be seen, and stood next to the women who had given me my bandana.


As the photos were taken, which would later appear on Facebook, I wondered whether anyone would even spot my tiny face poking out from under my bandana, and I didn’t care.



I considered a lot after that whether to come out publicity about being HIV. A journey that would take me six years to achieve.


In January 2023, three months after coming out publicly, I would sign up as a volunteer for Terrence Higgins Trust. Having found my tribe, I had made many new friends, who like me are living with HIV and thriving.


I was no longer afraid to be seen, in fact I wanted to be. I had changed my branding across my social media to incorporate the red ribbon, and now wear a badge and Terrence Higgins pin whenever I go out.


I am now very proud to represent and be part of the community of people living with HIV.


When I heard about the Fighting HIV Stigma, March Vigil and Rally that was going to take place on Saturday 18th March 2023, I immediately went to put it in my diary. However I noticed that it cashed with a Hyrox training session at my gym.


Hyrox is a global fitness competition that I have taken part in before, and will be volunteering in at their next London event, before possibly taking part again next year.


The training session I had signed up for, was more to continue to retain my strength which will also help towards my training for the Brighton Marathon on 2nd April 2023.


I decided that the march was more important. So booked an early morning class at the gym instead, so that I could free myself up to attend the march.


I had recently been added to a WhatsApp group made up of other people from the Terrence Higgins Trust Positive Voices Programme, some I knew, some I had yet to meet. There was excitement in the group ahead of the march, and chatter from those who were making the journeys from across the country to join us.


A small breakfast had been arranged at the LGBTQ+ Centre in Blackfriars. I didn’t know the place even existed, as I along with three others searched the area to find it.


Eugene, who runs the Positive Voices programme, and who I had met a few times, was there, along with tables full of people chatting over coffees and pastries, and taking out the banners and posters they had made.


It reminded me very much of the film Pride.



Based on a true story, it depicts a group of lesbian and gay activists who raised money to help families affected by the British miners strike in 1984, including Jonathan Blake.


Activist Jonathan Blake, who had been played by Dominic West in the film, is a gentleman I had met and interviewed for my YouTube channel, and is someone I now cherish to call a friend.


I had almost forgotten that I had played a small part as an extra in the film, during scenes where they recreated the original marches across the Westminster Bridge, the very same route that nearly 40 years later, I was about to take as part of today’s march.



It was an honour to march across Westminster Bridge and passed Downing Street, following in the footsteps of activists who have committed 40 years of support to HIV causes.


Jonathan was unable to be there, but he was very much in my thoughts throughout the day. I felt immense pride to follow in his footsteps, leading the way for my generation to follow his.


I didn’t feel any shame, or embarrassment as we assembled at Magnum Square near Waterloo for the 12 noon start.


As well as the friends I had already made, I looked around and could see people I knew and recognised from social media. DJ Alex Myles handing out whistles, activist and legend Emma Cole chatting to John who I had shadowed at a Positive Voices talk. Another activist Philip Baldwin who I follow was handing out the placards with recently appointed CEO of the Terrence Higgins Trust, Richard Angell.



Richard is one of the most amazing human beings I have recently met. His skill at public speaking is exceptional. I had seen him host a Q&A after a performance by Nathaniel Hall of his one man play First Time. I’m really excited to see how Richard will continue to shape the Terrence Higgins Trust.


As John and I picked out our placards, we caught up with friends Jo, Susan, and Matthew, who would be tasked with the duty of leading the procession holding the large banner that boldly proclaimed “Fighting HIV Stigma and Proud”.



A word that kept coming back to me throughout the day. It’s curious because I recently completed a questionnaire that asked me “What am I proud of”, and my immediate response wasn’t to consider “Being HIV+”.


On reflection, I cannot say that I am proud of how I contracted HIV, or for not taking protecting myself from it. But I am proud of how I have coped with it, and the effects it has had on me. I am proud of the person I am now because of it. Kinder, more considerate, and I really really value my life now.


The first thing I asked my mum after telling her I am HIV+ was “are you disappointed with me?” She immediately said no, and hugged me.


I like to think that both my parents are proud of the man I am, now in my 40’s and the way I present myself now. After posting my ‘coming out’ video last year, my dad said “That took guts!”.


I chatted to Emma Cole about how much I was enjoying being part of Positive Voices. Emma has now build a career in public speaking and education, and made an incredible impact. I was recently at the theatre sat next to stranger, and struck up a conversation about my being HIV+ and the lady recalled how she had seen Emma’s story.



The morning had started with rain, with me getting soaked on the cycle to the gym, but had dried out by the time we began the walk.


An incredible group called the Drum Works led the parade, as the sun followed us passed Big Ben and Downing Street. The rain clouds opened by the time we got to Trafalgar Square but it didn’t dampen anyone’s spirits.


The biggest take away I got from the march, was how supportive the crowds were. Cars waited patiently as the coordinated march closed roads in our path, and passerby’s took countless photos and videos, sharing our message. The vital part. As much as I can bang on about being HIV+ in my instagram posts, my message will only ever reach the people who follow me, the people I know. But I could see as the message we were delivering by taking to the streets was instantly being received by hundreds of tourists.


The drummers led us into Trafalgar Square where we arrived at a stage erected specially for the occasion.


Nathanial Hall opened proceedings, announcing himself as compare and “chief rebel rouser” declaring “You are not here today to do a bit of shopping, go and see a show, go see the sights, you are here to make some noise”.


Revd Ijeoma Ajibade had already opened proceedings with a vigil and moments silence after reading an except from Becoming a Man by Paul Monet. She paid tribute to the 40 million lives lost to HIV and AIDS over the past 40 years.


Anglican priest, Revd Jide Macaulay next took to the stage, delivering a message to the church, demanding that if you are HIV+ priests need to know how to take care of you, not stigmatise you. He proclaimed followed up with a “Can I get an amen!”


Bex Mbewe spoke about how to arm yourself with up to date information to become more knowledgable about HIV and the impact stigma can have.


Dr Claire Dewsnap and Prof Yvonne Gilleece thanked everyone for coming, and for sharing positive messages about living with HIV.


Michelle Bockor described her personal experience about being asked “What’s the best way to tell someone about your status.


Eli Fitzgerald spoke about the growth of hate he has seen since he began his transition, recognising that as a young person he has a role to play to change the narrative.


Ese Johnson asked “have we really moved forward?” As he described his own experience of shame.


Richard Angell then closed the speeches with a triumphant declaration that “We are fighting stigma and proud. We are fighting racism. We are fighting transphobia. We are fighting sexism. We are proud to be at the forefront of this movement.


Lending their voices, the large assembly from the London Gay Men’s Chorus sang anthems from The Greatest Showman and Lady Gaga, in an uplifting set, as onlookers hugged, celebrated and took selfies.



The day was a celebration, and although we remembered the devastation that HIV and AIDS has caused for decades, the mood wasn’t sombre, or of regret, but of hope and optimism, and gratitude that we have come this far, together, and that we can do amazing things, together.


For someone who moved to London from a quiet Northern town, I often feel lonely, and yet when I’m around my tribe, my peers, and friends living with HIV, I feel complete.



The rally included speeches from:


Revd Ijeoma Ajibade

Instagram @Revd_ije


Nathaniel Hall

Twitter & Instagram @NathanielJHall

Revd Jide Macaulay

Twitter @RevJide

Instagram @JideMacaulay


Bex Mbewe

Twitter @Bex_Mbewe

Instagram @iamladybex


Dr Claire Dewsnap

Twitter @DewsnapClaire

Instagram @DrClaireDewsnap


Prof Yvonne Gilleece

Twitter @DrYGilleece

Instagram @YvonneGilleece


Michelle Bockor


Eli Fitzgerald

Instagram @z.t.i.f


Ese Johnson

Twitter @EseJohnson_1

Instagram @Johnson_ese_


Richard Angell

Twitter & Instagram @RichardAngell


And a performance by the London Gay Men’s Chorus.

Twitter & Instagram @LdnGMC



The event was a combination of efforts with representatives from:


Actup

Twitter @ACTUP_LDN

Instagram @actup_london


AHF UK

Twitter & Instagram @aidshealthUK


BHIVA

Twitter & Instagram @britishhivassoc


Brigstowe

Twitter @BrigstoweInfo

Instagram @Brigstowe


Clini Q

Twitter @Clini_Q

Instagram @cliniq_cic


George House Trust

Twitter @GeorgeHouseTrst

Instagram @georgehousetrust


Gilead

Twitter & Instagram @GileadSciences


Mildmay

Twitter @MildmayUK

Instagram @mildmay_charity


NAM Aids Map

Twitter @aidsmap

Instagram @nam_aidsmap


National AIDS Trust

Twitter @NAT_AIDS_Trust

Instagram @nationalaidstrust


Wandsworth Oasis

Twitter @wandsworthoasis

Instagram @wandsworth_oasis


Sophia

Twitter & Instagram @SophiaForum


Spectra

Twitter & Instagram @Spectra_London


The Sussex Beacon

Twitter & Instagram @sussexbeacon

Terrence Higgins Trust

Twitter & Instagram @THTorguk


Trade

Twitter & Instagram @weRtradehealth


Viiv Healthcare

Twitter @ViiVHC

Instagram @viivhealthcare


Yorkshire MESMAC

Twitter & Instagram @yorkshiremesmac



In two weeks time, I will take on the Brighton Marathon to raise money for HIV charities.


Please support me by donating through Just Giving



Since coming out publicly as HIV+, I have made it my personal commitment to raise awareness and money for HIV charities and causes.


I have signed up to run my second marathon this April, and am raising money to cover costs and donate to several HIV charities that have helped me.


Since contracting HIV, seven years ago, I have helped to raise over £2500 for the Terrence Higgins Trust, by taking part in their Big Shave Off project and by running the London Marathon.


Iam now a proud volunteer at Terrence Higgins Trust and part of their Positive Voices Group.


Once I am trained I will become part of the team of speakers providing informative talks and education sessions to education, corporate, public sector and other audiences about my personal experiences of living with HIV.


As well as the Terrence Higgins Trust there have been many organisations that have helped me including,


British HIV association

National AIDS Trust

NAM Aids Map


And especially the NHS and 56 Dean Street.


I would like to continue to raise money for Terrence Higgins Trust as well as other HIV charities, and have entered to run the Brighton Marathon on 2nd April, the day before my birthday.


After covering the costs to enter the race, as well as travel and accommodation, I will divide the money I raise across the various charities.


If you can support me, I would appreciate any contribution.


Living with HIV+ is not easy for anyone, but these charities were there for me.


Whether you admire my courage for speaking out about living with HIV, or whether you would like to get me something for my birthday, please contribute to this fund, so that I can raise as much money as I can for these charities.


“Coming out” as HIV+ was incredibly scary. But the support of my friends and family and charities including the Terrence Higgins Trust.


This is my story:



If you would like to ask me any questions, or need someone to talk to, please DM or email philip@iamthat.uk


Every message will be treated with the strictest confidence.


-

That Philip Dehany


-


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