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At what we hope is the tail-end of one current global pandemic, We Are Still Here revisits an ongoing one that has fallen from view. The truth of the lives lived by those within the HIV/AIDS community isn’t one that’s often seen or heard.
It’s true that television programmes such as It’s A Sin raised the profile of HIV/AIDS immeasurably. In some respects it was a missed opportunity however, because after watching what was essentially a period-piece, many viewers still associate HIV with death or do not consider it a current issue.
Nearly 37 million people in the world have HIV. Even the terms HIV and AIDS are consistently confused, despite their intrinsic differences. Only 45% of the nation’s populace know how HIV can be transmitted, even though transmission is impossible in many cases. Many who are living with HIV/AIDS are still invisible, while shamefully continuing to face the stigma that has accompanied the pandemic from its early days. Social attitudes haven’t kept up with medical advances. We have 21st century treatments but 20th century attitudes to HIV.
Since last October, we have been interviewing people living with HIV from all walks of life. Having their stories recounted to us orally has been a privilege, for each participant who has come forward with their lived experiences has opened up with such honesty that at times the listening has been more difficult than expected.
It certainly was for me. I am one third of the research team, alongside Mareike Günsche, a photographer and educator focusing on human rights, gender issues and social change, and Adrian Flint, a senior lecturer in the School of Sociology, Politics and International Relations at the University of Bristol. I am a writer and HIV Awareness activist and have taken on the mantle of transcribing the oral interviews. I have also been living with HIV since 2007.
My diagnosis was an AIDS one, which was synonymous with a terminal outcome. HIV medication has come so far that not only can those of us within the HIV-community live healthily, we are also – when adhering to our meds – absolutely 100% uncontagious. The U=U campaign (undetectable equals untransmittable) has taken steps to address this truth, though shockingly there still hasn’t been a Government-backed campaign to spread the message. When controlled, the virus cannot be spread any more, but hope can be, especially for those who are newly-diagnosed. We Are Still Here aims to support this hopeful outlook through the sharing of stories.
You can listen to trailers of stories of living with HIV by clicking on the links below:
Stephen: Our Participants – Stephen – YouTube
Jonathan: Our Participants – Jonathan – YouTube
With these stories come issues ranging from the tragic to the downright comedic, sometimes in a surreal sense. One of our participants had a horse taken off her land because the owner thought it too would become infected. Many of the stories were much more traumatic in their nature, including tales of prejudice, abuse, rape, violence, ostracisation and callous moments of ignorance.
I, of course, have lived through some of these. What was most surprising is how others’ stories came to affect me. The very first interview I listened to lingered in a way that came to haunt me. I had to take the next day off as I found myself not only digesting what had happened to this individual, but also relating it to my own experience. The story from another succeeded in dredging up things that had happened on my own journey. Often, they were things I had forgotten.
Unexpectedly, coming to tell my own story (again) did not come with the freedom I expected. I found myself nervous to really open up about the last fourteen years of being a man living with HIV. Because I have been a proud and unashamed activist, this caught me off guard. When I did, it felt like a therapy session. This made me realise that the telling of one’s story isn’t only to educate others. It’s also a way to help the teller come to terms with what’s happened.
If the telling of my story and those of many different people can do anything, we at We Are Still Here hope it encourages others to come forward and share their experiences. The more we talk about something, the more it is normalised. This will dispel the stigma associated with HIV.
Our two other researchers also found the project an emotional experience:
“Quite often academic work pertaining to HIV and AIDS is rooted in statistics and trends. The language is frequently framed in the jargon of epidemiology. This project was, instead, rooted in stories, journeys, emotions and experiences. It was, in many ways, a determined effort to show the faces behind the statistics. We hope that we have done our participants justice.” – Adrian Flint.
“As a photographer I focus on participatory projects, where people take ownership of their narrative. Working with audio is a great chance to make people’s voices heard. During this project I listened to so much pain, fear and rejection it had a deep impact on me and I had to have regular breaks to digest. I am so thankful to all of our participants to be so honest, brave and open. If we start listening to others we can learn so much.” – Mareike Günsche.
I hope people learn of the truth. From an AIDS diagnosis, I got better and became HIV-positive. I now label myself as HIV-neutral because the virus holds zero power over me anymore. It entered my body, was dealt with medically and has now merely left an autograph in my bloodstream.
I am incredibly proud to be a part of the We Are Still Here team because I know the project is challenging out-of-date stereotypes. We believe people can be united in difference and it’s a goal of ours to banish the othering of others. We’re also very thankful to both the Brigstow Insitute and the Bristol Photo Festival for supporting us both financially and with regards to their belief in us.
We Are Still Here opens its first photographic exhibition this October in Bristol at The Vestibules but how the project records the journeys of its participants through their own oral histories is one of its core components. We call this our first exhibition because the project has been designed as an ongoing one. There are so many more lives and experiences to record for posterity because not only are we all able to learn from these stories… we are all still here.