What It’s Really Like Living With HIV Today

Once a year, in the run-up to World Aids Day on 1 December, we wear a red ribbon as the universal symbol of awareness and support for people living with HIV. But why when — even as we grapple with the Covid-19 pandemic — there are some 38 million people living today with HIV, and an estimated 1.7 million individuals becoming infected every year, aren’t we having a more consistent dialogue around HIV/Aids issues?

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Visual AIDS, the organisation that initiated the Red Ribbon project in 1991, disseminates and supports the work of HIV-positive artists — both established and emerging — through exhibitions, events and publications to raise awareness about the virus. Founded in 1988, in tandem with the World Health Organization declaring the inaugural World Aids Day, Visual AIDS was one of the first initiatives to record the impact of Aids on the artistic community; by the end of that year, it had claimed almost 62,000 lives in the US alone since 1981.

A Red Ribbon Bee at the Clocktower (New York City), 1991. From left: Dieter Hall, Ira McCrudden, Joanna Thornton, Marc Happel, unknown participant, Jimmy Patrick, Allen Frame.

© Courtesy Visual Aids

Now, thanks to antiretroviral therapy (ART) — the daily use of a combination of HIV medicines — the life expectancy of someone with HIV is close to that of someone without the virus, for those who have access to the treatment. If they maintain an undetectable viral load (when the virus exists in such small quantities that it can’t be detected in the blood; in the US, that’s below 50 copies per millilitre of blood), they cannot transmit HIV sexually and in almost every case it’s possible to prevent transmission of HIV from a mother to her unborn child.

Society, however, has some serious catching up to do with modern medicine — HIV/Aids continues to hold a deep stigma. This summer, former Wales rugby captain Gareth Thomas launched Tackle HIV to address the public’s misunderstanding of HIV after he was blackmailed by a tabloid into revealing his HIV positive with undetectable/untransmittable status. A survey conducted by his campaign found that 61 per cent of UK adults might or would end a relationship if they found out their partner was positive over concerns of contracting the virus, and only 19 per cent knew that if a person living with HIV is taking effective treatment, they can’t pass it on.

Meanwhile, data published by UNAIDS in 2020 showed that in 25 countries, more than 50 per cent of adults have discriminatory attitudes towards people living with HIV. Irrational fears of HIV infection, negative attitudes towards those with HIV and the continued criminalisation in many countries of HIV exposure, non-disclosure and transmission are a persistent obstruction to addressing the global epidemic.

We spoke to five creative forces who, like Thomas, are going public about their personal experiences to end the stigma surrounding HIV, calling for a more progressive society and ultimately a cure.

Kairon Liu with The Portrait of Tree #1, 2018.

© Courtesy Kairon Liu

Kairon Liu

The 28-year-old Taipei-based photographer is a graduate of Shih Hsin University and works as an artist, curator, and photographer. Since 2017, Kairon Liu has been developing Humans as Hosts — a project in collaboration with social networks, NGOs, and public health authorities around the world consisting of portraits and interviews with people living with HIV. “I want people to know what we feel in our everyday lives and how we stay alive with the virus and stigma,” he says. His interview with Vogue was the first time he spoke publicly about his own positive status.

“In 2015, aged 23, I did a year of alternative service [Taiwan has had mandatory conscription for men since 1951] as a photographer and assistant at the National Taiwan Museum of Fine Art. During this time I met a guy. I asked about his status after we finally slept together — I knew I could take PEP [post-exposure prophylaxis; a treatment that can stop an HIV infection if taken within 72 hours of exposure], but he assured me I needn’t worry.

“Two weeks later I got a fever; I went to see a doctor and was diagnosed with HIV. I was so upset. I tried to contact the guy, but he blocked my number and on every app. Being gay, deep inside I always knew there was a risk, but I considered myself to be well behaved — I don’t sleep around or do drugs — but anyone can get HIV. It became clear I had my own prejudices to confront.

Forgiveness and Fallible Beings, 2015.

© Kairon Liu

“Before 2015, my work was more about observing religion and contemporary beliefs but since my diagnosis I’ve become more spiritual. My friend — the subject of many of my photographs — has the alias ‘Tree’ because when I was sick, I saw myself as a tree trunk being cut-off, nothing was left but the roots, but as I got better the leaves and branches grew back.

“In 2017, I did a residency at Pier-2 Art Center in Kaohsiung — the south of Taiwan where I got the idea for Humans as Hosts and so began my journey as a visual artist living with HIV. HIV/Aids activism in Taiwan is geared more towards an individual’s physical health rather than creating a dialogue about the individual’s mental status, making it quite isolating. Through research, I came across Visual AIDS, which led me to Residency Unlimited in New York in 2018.

The Rest Of Me? from Humans as Hosts, 2018.

© Kairon Liu

“I never thought I would become a full-time artist or even a curator, but my experiences have made me who I am now. Every day, people living with HIV take medication to keep themselves healthy and it’s a constant reminder that you’re different — just because you’re staying alive physically, doesn’t mean you are mentally. By disclosing my status I want to create bridges between people living with HIV.

“Last year I curated an exhibition at MOCA Taipei called Interminable Prescriptions for the Plague, in which several HIV initiatives and artists were invited to explore issues surrounding HIV. I currently work as an in-house curator at Taitung Art Museum in southeast Taiwan, and I’ve been offered a scholarship to do an MFA in New York, on hold for now due to the Covid-19 pandemic.

“Man, I don’t know if I’m living a healthy life, I’ve always been a workaholic, but I sure am living a meaningful one.”

The Invisible Opposite of Male, 2018, Marguerite Van Cook.

© Kairon Liu

Marguerite Van Cook

In the late 1970s, as the lead singer of the band The Innocents, British artist Marguerite Van Cook toured with The Clash before settling in New York where she ran a gallery from 1983 to 1986 with her partner James Romberger. It was here that they met legendary artist David Wojnarowicz and together, during the last years before Wojnarowicz’s Aids-related death in 1992, they started the graphic novel 7 Miles a Second. Van Cook’s work — spanning the mediums of film, painting and photography — is part of many museum collections, including those of MoMA and the Whitney in New York. She is currently completing her PhD in French and is on the Visual AIDS board of directors.

“In 1997, I was hospitalised for six weeks with cryptococcal meningitis — the hallucinations were so severe the doctors assessed me for a psychiatric condition — and that’s when I was diagnosed with HIV. While I was in hospital HAART [highly active antiretroviral therapy] became the new standard of HIV care — if I had contracted it any earlier, I’d probably be dead. There were a lot of side effects at first; I lost a lot of weight — it’s a double-edged sword because you’re very grateful you’re still alive but horrified at the way you look. I’ve come to embrace my appearance now.

“When you first get diagnosed you lose a sense of your sexuality — you don’t feel entitled to have a sexual relationship because you’re carrying a disease that’s typically sexually transmitted, that lodges in your psyche. Even though now that undetectable means untransmittable, it’s hard for people to disclose their status because there is still so much stigma.

“Every time you form a close friendship with someone you feel the knowledge that you are positive could be a burden for them, but then they could get upset if you don’t say anything — you never know what the reaction is going to be. When I came out, some people pretended that they didn’t know — they’d describe me as an AIDs activist rather than an AIDs survivor.

“I’m very lucky that I have my partner who I’ve been with for about 35 years. We told our son (now 34) I had HIV around a year after my diagnosis, at which point I felt I owed him the truth. It was hard, but he’s an incredible person; every day has to be special, we have to be completely present. I get dressed up every day and I’m bolder in my fashion choices because, well, why the hell not?

“I don’t want the disease to define me as an artist, yet I have an obligation to be an activist. As time goes on, the more comfortable I am in my own skin and the less forgiving I am of people when they are idiots. My medical costs are astronomical, around $40,000 a year, which fills me with rage when I know how cheaply these medications can be made. And I’m tired of accepting different modifications in medicine; I take three pills a day. I don’t care if it’s just one, I want a cure now — that’s my next project.”

Sunil with NY Review of Books, circa 1975 from Friends and Lovers – Coming Out In Montreal in the 1970s.

© Sunil Gupta/Hales Gallery, London and New York

Sunil Gupta

For the past four decades the New Delhi-born, London-based, Canadian photographer has documented LGBTQIA+ cultures around the world in an effort to raise awareness about issues surrounding race, migration and gay rights. Gupta’s 1976 series Christopher Street captured New York’s newly emancipated gay community before HIV/Aids hit, while his more recent work gives an insight into his life after contracting HIV. Gupta has several current exhibitions including Sunil Gupta: From Here to Eternity at The Photographers’ Gallery, London (until 31 January 2021) and Masculinities: Liberation through Photography at Berlin’s Martin-Gropius-Bau (until 10 January 2021). He also published two books this year: Lovers: Ten Years On (Stanley/Barker) and Sunil Gupta: From Here to Eternity (Autograph).

“I’ve been out since I was a teenager and being gay is part of my professional life. In 1995, I met a guy that I was taken with, he was only just beginning to explore his sexuality. I went to get tested and the results for HIV came back positive. We stopped having sex shortly after and he eventually left me for fear of becoming my carer. For a while, I was the archetype of someone with HIV in that era. I’d never had a problem meeting people but there was so much anxiety and a fear of rejection all of a sudden — when I told a partner I was positive, they didn’t stick around for long.

Untitled #20, 1976. From Christopher Street, New York City.

© Sunil Gupta/Hales Gallery, London and New York

“Finding out you have HIV is a shocking diagnosis, but I felt comforted being part of a broad social network of gay men that grew around me, partly through the Terrence Higgins Trust, who are knowledgable about HIV and not freaked out by it. There is a real sense of camaraderie.

“I’m very fortunate to live in the UK — all my medication and care is covered by the National Health Service. I take a single pill that’s a cocktail of drugs, but there are side effects; for example, I lost all my body fat so I’m really sensitive to the cold. The fat tends to accumulate somewhere, in my case around my stomach, so I’ve joined a gym, which I never thought would happen.

“In India, HIV is associated with being lower class rather than a gay thing. There’s a nationwide myth that HIV arrived in the south and was spread by drivers up the trucking routes where there are a lot of red-light districts. In the early years, the Indian government — much like the US — was terrible and wouldn’t acknowledge the pandemic. It finally responded and launched a public health program in 1992 called NACO [National AIDS Control Organisation], aimed at the poor. Ironically, it forced this culture that never talked about sex, to talk about sex.

Selfie, circa 1975 from Friends and Lovers – Coming Out In Montreal in the 1970s.

© Sunil Gupta/Hales Gallery, London and New York

“The challenge for me in my work has always been knowing how far to push the boundaries. I want my work to be exhibited in India as well as in the west and so it’s about finding a way to depict LGBTQIA+ communities, or people living with HIV, that can exist publicly in both cultures.

“My partner and I have been together for 11 years and he is negative. It became difficult to live in India as a gay couple at that time because the government reinstated a [colonial era] law criminalising gay sex, that they abolished in 2009. [In 2018, India’s supreme court finally brought down the law once and for all.]

“I’ve been undetectable for more than a decade, so I’m a success story of sorts. I have regular check-ups to measure my viral load count.

“Experiencing gay libration in the 1970s taught me that the best way to overcome shame and guilt is to speak out. I’m positive — take it or leave it.”

Lynnea, Los Angeles; from Through Positive Eyes (Aperture, 2019).

© © the artist/AGHC

Lynnea Lawson

By day, 35-year-old mother-of-one Lawson works as a tax preparer and teaches at a tax school. Recently she has been using her free time for art and HIV advocacy, or as she puts it, operating as an “artivist”. Lawson is one of 130 people living with HIV and Aids from around the world who has contributed to the collaborative photo-storytelling project Through Positive Eyes. Published as a book by Aperture in 2019, it acts as a passionate call-to-action to combat stigma surrounding HIV and Aids, by chronicling this particular moment in the pandemic, when effective treatment is available to some, but not to all.

“My sister told me I was HIV positive when I was seven years old. It was 1992 and people were calling for Magic Johnson to be kicked out of the NBA for being positive and Ryan White, a young boy who contracted the virus from a blood transfusion had recently died. The first thing I did was go to my mother and ask her why she didn’t tell me I was dying.

“She sat me down and said, ‘Before anything happens to you, it’ll happen to Mommy because she has it too. As long as you see me continuing to be healthy and taking care of you and your siblings, you’re going to be fine’. Those words helped me get through a lot.

“I never felt alone growing up, I went to a clinic that treated other positive kids and they organised summer camps. There was a lot of support and a strong community spirit. Social media can be a beautiful thing and I’ve been reconnecting with a lot of people I met at the clinic through a Facebook group.

“Now I’m a mother to a six-year-old girl and she is HIV negative. Making sure she didn’t inherit the virus from me was easier than people might think. I’m undetectable and I continued taking the same one pill a day as I always do throughout the entire pregnancy. Four hours prior to giving birth I was given AZT intravenously. I had a natural birth in a hospital and, for the first six weeks of her life, my daughter was administered a low dose of the drug to make sure she didn’t seroconvert.

“The hardest part was trusting the doctors and getting over the negative side effects [including nausea, vomiting, muscle pain and loss of appetite] AZT had when it was prescribed in large doses in the past.

“I do think the conversation has moved on from HIV/AIDs being something that only homosexuals and drug abusers get, but there’s a long way to go. So many people don’t know that being undetectable means untransmittable, they still think you’re going to get sick and infect other people easily.”

© Max Dutka and Nikita Sereda

Mykki Blanco

The American musician, writer and actor, 34, is a pioneer of the queer rap genre and a longstanding activist for trans and queer rights, and racial injustice. After leading a masterclass at the United States Conference On Aids in 2019, 2020 saw Blanco find a new appreciation for literary work — writing their debut op-ed for Vogue and contributing to two queer anthologies — and dedicating themselves to developing their craft as a composer, songwriter and vocalist. This work will culminate in the release of two bodies of music in 2021.

“Many people believe that becoming HIV positive would be the worst thing to ever happen to them. For me, and many others living with HIV, once you become positive you realise that that scenario isn’t true. Living with HIV is part of my larger spiritual plan — there is poetry and a depth to my life that I’ve cultivated. I’ve faced much more traumatic situations than being diagnosed with HIV, and not only have I survived, I am someone who is HIV undetectable with a growing public platform in creative art; I’m living lovingly, elegantly and with purpose.

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“Music has been my saving grace this year. I’ve found solace in work even if, like so many other artists, I haven’t been able to release it as planned. It’s allowed me time to collaborate further with other artists and made me realise you can always go deeper.

“I’ve heard people trying to make comparisons between Covid-19 and HIV along the lines of ‘Anyone can get Covid-19, you can catch it in the supermarket; HIV can be prevented with the use of condoms or making better decisions.’ This kind of ignorance continues a legacy of stigma.

“A network of friends, family and anyone who can show you love is essential in the beginning. HIV stigma is more traumatic than the diagnosis itself. Until you can transcend what living with HIV looks and feels like in your own life, creating that hearth of love and understanding is very important.

“I advocate because, in this incarnation, it’s who I am. I am queer, I am gender-queer, I am trans-masculine. I remember the pit of loneliness and confusion I felt when I didn’t have those words to name myself when I felt like an outsider and could not understand that I come from a long line of powerful beings who have been continually repressed, exiled, colonised, silenced and killed for being who we are.

“If it is safe for you to be open about your status, you should be — the more people who are, the more we can erase the stigma around HIV. Living with HIV is as nuanced as not living with HIV. Every walk of life, race, creed, religion, gender and sexuality live with HIV, and when people can understand this we can destigmatise it.

“If Covid-19 has shown us anything, it’s that we are in control of so little. Why not use our time on Earth to cultivate the better parts of what makes us human? Our capability for empathy, understanding, love. Let these be the same virtues that we use to end the stigma around HIV and become even more whole as a society.”

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