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A Black history of HIV in London – stories from Londoners

15th October 2020

Unheard Voices exhibition

The Unheard Voices photographic exhibition from the Africa Advocacy Foundation. A beautiful collection of photos that highlight health and social care inequalities and the needs of Black communities in the UK.

Fast-Track Cities London and One Voice Network  are marking Black History Month 2020 by documenting the stories, work and opinions of Black people living with HIV in London and the people and organisations supporting them.

  • Black people in London are disproportionately affected by poor sexual health
  • Of all heterosexual people diagnosed with HIV in 2018, 41% were Black African men and women
  • 52 per cent of Black Africans are diagnosed late with HIV, which means they have a ten-fold greater risk of dying within a year compared to those diagnosed promptly
  • People on medication with the HIV virus suppressed cannot pass on HIV. This is a relatively new concept among Black African and migrant communities due to stigma and discrimination, lack of information and appropriate resources, and long term inequalities.
  • Many Black people in London are living long and well and are passionate about educating Londoners about living with HIV in 2020

We are calling out to organisations working for and with Black people living with HIV to share their work, their stories and their thoughts on how London can work together to get to zero HIV in Black communities.

If you are a Black person living with HIV and want to share your story, thoughts and opinions or send us a video, please email maria.vidal-read@nhs.net.

 

Interviews, videos and blogs shared with us for Black History Month 2020

Dr Vanessa ApeaInterview with Dr Vanessa Apea a consultant physician in Genito-urinary and HIV medicine and the clinical lead for Sexual Health at Barts Health NHS Trust. Vanessa is also an Honorary Senior Lecturer at Queen Mary University of London and a former Fulbright scholar. Vanessa is passionate about reducing inequalities in healthcare. She has made this a central focus of her clinical and community based work and has received an NHS 70 Windrush Award for her contribution to improving health equity. She has an established track record of exploring barriers to engagement in care in marginalised populations and has a particular research interest in participatory approaches and the intersection of race, gender and health.

 

Interview with Reverend Jide Macaulay

Reverend Jide Macaulay is an openly gay British-Nigerian born in London, who has been a Christian minister since 1998. In this video he discusses his personal journey with HIV and experiences as an HIV positive activist. He also explores religion and HIV and the role religious leaders should take to fight stigma and discrimination for Black people living with HIV.

 

Juddy Otti, PrEP and Prejudice Project Co-ordinator, Africa Advocacy Foundation

Juddy Otti AAF

“My hope is one day there will be an end to stigma and I will have a better quality of life”.

prepandprejudice.org.uk

 

 

 

 

 

 

Collection of poems from African Health Policy Network (AHPN)

AHPN started 22 years ago. African women living with HIV were routinely excluded from discussions about treatment and care. They were not invited to conferences or meetings and their voices were not heard. A group of strong vocal African women began with their activism, meeting in each other’s houses, printing material and demanding to be heard at conferences held by, and for, medical experts. They adopted the name the African HIV Policy Network and set up an office under the umbrella of the National AIDS Trust. As the work burgeoned and they became established they set up their own offices and developed numerous funding streams. Today AHPN is the acronym for African Health Policy Network with the name change reflecting the fact that HIV is one of a range of health issues affecting African descent communities disproportionately. These poems are written by three women who stand on the shoulders of those founding Mothers.

 

POEM: I AM A YOUNG PERSON, BY JANE

I was never there when I was conceived

I don’t even know if it was an agreement or a one-night stand

I was never told that I had it in my blood

But at 13 my mum told me the terrific news

She educated me about HIV and I was born with it.

 

I was going to take a pill daily for the rest of my life

She said it so easily as if it was actually easy for a teenager like me

She said it affected anyone and does not discriminate, but why me and not them

Yellow, black or white, I was told

But the key is medication and I can take control of it.

So how about dating and reproduction, there are good guys out there

Who will accept me with this virus of a friend?

I want to hear this from someone of my age

I want to cry I want to scream but it will draw the attention

But not for this HIV virus

But all because I would like to live like all my mates

 

Life can be so unfair

Life is a mystery

But life is full of surprises

I’m now a young adult and I understand it more

I’m loving the uniqueness in me

I’m now looking forward to my graduation

That is the day I have decided to tell my committed boyfriend about it.

I’m ready, yes I am, ready to stay with those that love me as I am.

And let go those that still don`t want to learn about this virus

Yes, undetectable is equal to untransmittable, that’s whatsup.

That’s the new me and I am willing to share my success story.

 

POEM: IT WAS A TOTAL TURN AROUND, BY MAKEADA

I never knew I would see the sun again

I never thought I would enjoy a love life again

Neither did I ever think of being productive again.

 

I was blinded, I was ignorant and I never bothered or motivated

None of this was my portion (tofiakwa)

It was never going to be part of any of my life stories

But February 2004 I got the shock of my life

A big surprise for me full of challenges

An HIV diagnosis took over my life,

My freedom, my confidence and my self-esteem was compromised

HIV came in my life with a package and then some

Stigma, discrimination, inferiority and fear was in me.

 

It also brought out the African woman in me

The boldness, the fighting spirit, as well as the mover and shaker.

 

I am now not just a woman

but a strong powerful African woman.

I am leader in the community, an advocate, a counsellor, a helper

A giver of hope, a helper to those that are now in the same boat with me.

I represent the changing face of people living with HIV.

I live the experience of having the virus in my system

But I am a saviour and looking forward to the best life ahead.

 

I am committed to be part of the change

I’m committed to tell my story without fear, guilt, shame or inferiority

I am part of the changing face of HIV.

I’m empowered to fight stigma and discrimination of people living with HIV.

I am alive to impact the world with my skills and my testimony.

Most of all, I am in full control of my life whilst living with the virus.

 

POEM: STIGMATA, BY ANON

 Eyes darting left and right,

Smiles hidden, scowls unknown,

Perhaps rabid racists, resembling summer red English Pillar Boxes.

Their messages and secrets posted silently,

For we are all Hijab’d now.

My scarf used to mask me

While others mocked me

It used to mask my HIV

But now it’s just me

Mainstreaming.

 

Collection of prose and poems from House of Rainbow

The videos below are a collection of stories and poems from @HouseofRainbow sharing stories from Black men who sleep with men living with HIV.

These men are from a variety of countries including Cote D’Ivoire, Zimbabwe, Ghana and Nigeria, and include one French speaking contributor.

“The poems and prose in this collection are personal, direct, witty, humour, sad, desperate and educational. At times when many felt they have no chance of surviving this deadly virus, we have created a safe place for people especially gay men with HIV, where they can pour out their minds and souls and be nourished with abundance of love.” – Rev Jide Macaulay, www.houseofrainbow.org

 

This is Benny from Ghana. He is a man who sleeps with men and he is HIV positive. He tells us about what it felt like to find out he was HIV positive.

 

This is Arnold from Zimbabwe, a proud living man who sleeps with men and a deep faith Christian. He is also living with HIV. “When I first got diagnosed I thought it was the end of the world. I was so afraid. Afraid to even share my positive status with family and friends. I stick to my treatment and I am undetectable. HIV is not the end of the world, it’s just the beginning.”

 

“If you want to know the true reflection of yourself, look into the mirror. When I was diagnosed in 2009 I felt my life was in danger, as if the world had crashed on me. I had no hope, I had no future, but I spoke to the mirror. I had a mirror in my room because I knew I had no friend. “Life doesn’t end when you have HIV.”

 

Beautiful words from our French speaking contributor from Cote D’Ivoire. “And I rise from the ashes. I promised not to be controlled by this stranger in my life.”

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