‘A Posi+ive Life’ – a conversation with Johnny Autin
My name is Johnny. I am 35 and I live in Birmingham. I am a dance artist, a choreographer/ creative director and run a touring dance theatre company. On Tuesday 1st of December, it is World AIDS Day, a day dedicated to raising awareness (and money) to help fight HIV, both the virus and the stigma and discrimination that people live with HIV still face in UK and across the globe.
The following interview is my small and humble contribution to this fight.
When were you first diagnosed with HIV? How did you think and feel around the time of your diagnosis?
I was diagnosed in 2011 and I had been living in the UK for five years at the time. I moved from France to study here when I was 21. At the time, I was freelancing for a dance company in rural Hereford and I would go to the sexual health clinic a couple of times a year. I “grew up with” the virus in a way, throughout my life I was very aware of it, especially as a gay man. I am 35 today and I am as old as the virus itself. I feel like during the first few years of my sexually active life, I was quite scared and anxious about HIV, and also very badly educated about it. I remember clearly that I would go for HIV and STIs tests every six months wherever I would find myself for work, and each time the test would come back negative, which was always huge relief despite practicing safe sex with my partners over the years. After a while, I think that I started to be less worried about it and “let my guard down” on a couple of occasions.
That may sound silly, but after a dozen of negative results I may have thought that everything was and would be fine, because it always had been up until then.
I got a phone call from the nurse that asked me to return to the clinic the next day and that was when she told me my diagnosis. She was really caring, and she took a great care of me during what would turn out to be quite a traumatic event. I will remember that day forever because it changed everything and mostly for the better. At the time, I didn’t know anyone that was living with HIV so I was pretty scared, and I had to find out a lot for myself and in a short amount of time to feel like I could overcome the shock of the news and how to manage my health and wellbeing. That night, I told a few friends and we made light of the situation with a few drinks to drown our fear and our sorrow. There was an immense sense of loss at a time but telling my friends and support network was really what got me through the first few days, weeks, months. Offloading and disclosing my diagnosis helped me overcome some of the shame and the stigma and preconceptions that I was having about HIV.
The trauma of testing positive for HIV resurfaced years later as I had pushed down my own feelings and emotions to show the people who cared about me that I was okay, and everything was alright. For a couple of years, I ignored my mental and emotional health to save face and to avoid people worrying about me because “on paper” everything was fine and I was healthy. So I had to do a bit of a work on myself to rediscover my inner happy positive self (pun intended!).
What does “living with HIV” mean to you in 2020?
As we all know, it is a completely different story than it was 30 years ago, for example, with the development of the antiretroviral therapy (ART) that keep us healthy and safe we can totally live long, happy and fulfilling lives.
The U=U prevention campaign has been a real game-changer from my point of view. We’ve known for years that the HIV treatments reduces the risk of transmission but now there is scientific evidence that the risk is not just reduced it is completed stopped. A person with sustained, undetectable levels of HIV in their blood cannot transmit HIV to their sexual partners: undetectable viral load = untransmittable HIV.
I have been undetectable since a few months after I started taking my medication and knowing that I wasn’t putting anyone at risk has been instrumental on my journey to recovery and to myself. The U=U campaign was and is really empowering because it helps dispel any dated myths and HIV related stigma.
There are also a lot more high-profile individuals and celebrities that are proudly coming out as living with HIV, which is brilliant and inspiring because everyone should be living their truths whether it is about a health condition, gender identity or sexual orientation. MP Lloyd Russell-Moyle in 2018 and Gareth Thomas CBE in 2019 are few examples. This kind of advocacy and visibility is what we need to eradicate some of the stigma and it also means people living with HIV don’t have to hide in shame. It promotes HIV testing and, as we know, knowing your status is one of the ways to remain healthy and keep everyone safe (in addition to safe sex practices, PrEP, PEP etc.).
We have come a long way but there is still a huge amount of discrimination against people living with HIV today. Personally, I have seen it even within the queer community (as well as other forms of prejudices) and on social media platforms. That is why it is important to talk about these issues, to educate ourselves and our peers and to raise awareness. HIV exists in the world and that is no-one’s fault, but we all have a part to play in eradicating the virus, if only because we can!
What is your current relationship status?
I am in a monogamous relationship. We’ve been together for two years now. He is HIV negative. On our first date, I could tell I fancied him a lot because I disclosed my HIV status to him there and then only after a few G&Ts at The Loft. And that seems to always be my tell if I like a guy. He had never been with somebody positive before and was honest about it, so we talked, I told what I knew, and he also did some research online on his own. We are both healthy, happy and in love, which is as disgustingly cute as it sounds.
I have now told pretty much everyone, my family and my colleagues. I’m pretty out and proud about most things to be honest.
What is the significance of World AIDS Day? What does it mean to you personally?
I remember my first World AIDS day a few years after my diagnosis. I went to Manchester with a friend and we took part in the vigil. We walked around Canal Street in remembrance of those who died during the AIDS epidemic from the mid-1980s. It was really sad, but it was also a moment to come together as a community. This year because of Covid-19 everything takes a different meaning somehow, but in term of sexual health we are have real chance to prevent further HIV infections. The government’s past and current restrictions mean that there have been far less hook-ups, so it is the most appropriate time to get tested or to start getting tested more regularly.
On the 1st of December, let us remember and honour the brothers and sisters (32.7million to date) that we’ve lost for the last 35 years. And it is also the time to take some preventative action, so talk about HIV openly and freely, get tested, encourage people around you to do the same, and advocate for charities and organisations that support this fight.
What is HIV treatment like and what does it involve?
The antiretroviral treatment regimen that I am on and that I have been on for few years now is one pill that I have to take daily roughly at the same time each day. Personally, I take it in the morning with my vitamins and supplements, so I don’t have to think about it too much. It is really not a chore as I know that this one pill a day keeps me healthy and keeps my partner safe too.
I used to go to hospital (Queen Elizabeth Hospital in Birmingham) every three months for blood tests, and the following week a doctor’s appointment where they would review my test results to make sure I am still undetectable, my overall health and, as importantly, the level of my CD4 cell-count that indicates that my immune system is strong and able to fight off infections. Now, because I have been undetectable for few years and that I am healthy, I go for these tests every six months, and I get my medication delivered by post which is super helpful.
At the start of my treatment I had to try out a couple of different regimens of medications to see which one would fit me and my body better. There are several options, and each have different sets of side-effects that usually go away after few months. The medication that I have now have virtually no side-effect and my body is responding really well to them.
What would you say to somebody who was worried about going for an HIV test?
I understand. It is scary. I remember the first time that I went for a sexual health screening. I was shaking like a leaf waiting for the results to come back for a week. It was nerve-wracking because of the stigma around gay sex, and the shame. I felt like I had done something wrong and that is more in relation to psychology and societal acceptance of homosexuality that it is about HIV, but it says a lot about the complexity of the stigma and the taboos that surround the virus. Similarly to a Covid-19 test nowadays we are a little anxious about the results.
That is totally normal and human to be nervous, but ultimately knowing your status or being more aware of your health will empower you to take care of it and manage any issues that come along the way. I understand the worry and my advice to you is that if you are sexually active and with multiple partners I believe it is your duty to yourself and to the people you have sex with to get tested.
It is important to the people you love and those who love you to keep yourself as healthy as you can, whether we are talking about sexual health or general fitness and wellbeing. To me it comes with the territory of being an adult.
What do you think about PrEP and the government’s move to make this more widely available on the NHS?
I am really excited and thrilled about this and I think this is one of the best things that came out of 2020. Three years ago, the government rolled out the HIV pre-exposure prophylaxis (PrEP) trial programme, but it was only accessible to 10,000 participants.
PrEP is an antiretroviral medicine which, taken once a day, prevents HIV transmission, and that clearly needed to be made more widely available and free to reduce the number of new infections. Since April this year, the preventative drug is now available in England which means more people can be protected. If you feel PrEP might be for you for one reason or another please, contact your GP or your local clinic to find out more.
I believed there is still a lot of work to do to get the message across around PrEP, especially with groups other than gay and bisexual men, such as women, trans people and ethnically diverse communities.
Five years ago I remember marching for the London Pride with the Terrence Higgins Trust (https://www.tht.org.uk/) which is the go-to organisation in the UK when it comes to HIV. We were raising awareness about PrEP because it wasn’t available for everybody and now it is. We have come a long way and that should also be celebrated!
What do you think of the sexual health services available at Birmingham LGBT?
They are the people who have have asked me to write this blog so obviously they are fabulous, and we love them very much! 😉
They are the only LGBT organisation in Birmingham that are offering such an extensive and continuous support to our community. Hot tip: they have a wide range of condoms and lube that you can request by post. It’s a fantastic place to find out more about all the free services available in our city around mental health, family support and adoption, sports and cultural activities. They are working in partnership with Umbrella Health (https://umbrellahealth.co.uk/) which offers free sexual health services in Birmingham and Solihull. One of their programmes including free home testing kits both for HIV and STIs available in pharmacies that you send by post.
What advice would you give to someone who was recently diagnosed with HIV? Or to somebody who tested positive and they are struggling to come to term with their diagnosis?
I would say “you’ll be fine bab!” (in a warm empathetic and understanding way). What happened years ago is not the reality that we live in now. Although the trauma and fears linked to the epidemic itself and the propaganda, the legislations, the discrimination that followed and what we may read in the comment section is still present, things have changed. You are going to be fine and overcome this because there are treatment options available, because there is support widely accessible, because I’m sure you’ve around you people who love you, who care about you and who will be supporting you. Don’t hesitate to ask for help and seek support to any mental health services available to you, and don’t underestimate the power your close network. Your friends, colleagues, family, community is here to support and help you.
Final tip: Pay the Twitter trolls no mind!
I think that our queer community has been, and still is, the target of discrimination and violence. That target on our backs has made us really good at pulling together when “s*** hits the fan” and World AIDS Day honours that and commemorates how the community came together during this crisis.
Ask for help: that is the main thing. Ask for support and mental health support because I think the sexual health and the physical health will be available to you. Just look for the network, the people who will keep you on your feet and you’ll be fine. You are gonna thrive!
What advice would you give to someone who is starting to date somebody living with HIV?
I am not an expert in the matter but, from my experience, if you are just starting to date a guy who is HIV positive, don’t show them that you are freaking out if you are, because that pretty hurtful. Communication is key in any relationship so whether you are in a sero-discordant relationship or a same-HIV-status one, talk and be honest.
Some of the nicest responses I have had after disclosing my status to a date or a partner was when they were open to learn, to find out more; they asked a lot of questions and would even do their own research. We would talk at length about safe sex practice, comfort zone levels and intimacy.
If you are dating, show them you care and that you are present. Each of you are going to find ways to navigate this situation because it is about two different lived experiences (and that would be same around other issues like gender, race, sexuality, etc.). The beauty around being queer in my opinion is that you don’t have to conform, so come up with your own rules around the relationships. I always say: as long as it’s safe, consensual and legal, go for it!
I really think showing love, compassion and vulnerability are the sexiest traits.
Have you experienced unexpected positive outcomes about living with HIV?
Maybe in relation to the journey or the purpose yeah.
I am leading a much healthier life than was before my diagnosis. I take better care of most areas of my health when it comes to sleep, nutrition, alcohol consumption, and mental health and emotional wellbeing. That is also a testament to the people who have supported and helped me along the way.
I have more fulfilling and authentic relationships with my friends and family. I feel like have stronger sense of purpose and what I want to do with my life because I have this experience of overcoming the challenges around the diagnosis and managing a chronic health condition. I have truly realised that life is fragile, precious and much be cherished.
I set up my own company in 2013 and started creating my own choreographic work. I have always been a passionate person, but it reignited a fire in belly. I toured internationally with other arts organisations and my own, Autin Dance Theatre. Most recently, I travelled to Tanzania, Rwanda and Kenya. On most days, I try to be the best version of myself and find ways to be of service either to my network, colleagues and the wider arts and cultural sector. I am not happy that I am living with HIV, but I am grateful that the experience has taught me so much and made me a better person in some ways.
Would you consider yourself an activist?
I studied law at university before being a dancer and a choreographer. I feel like I have always had that kind of fight against injustice within me and the urge to act and do some things to instigate a positive change.
Most of my artistic work and the projects that I have developed and delivered always touch on a political or societal issue. For example, I first choreographed a solo inspired by the Arab Spring in 2013. In other work I talk about mental health or queer identity.
Our upcoming project is called ‘A Posi+ive Life’ and it will tour across the UK in Spring/Summer 2021. I started creating it a few years after my diagnosis when I realised that there was so much information around sexual health and sex education that I personally was not aware of.
I learned new terms, new theories gender expressions, sexualities and how to deliver sex education in creative context and came up in collaboration with the cast of performers and the specialists we brought in, with an immersive and interactive dance theatre experience for teenagers about sex, love and relationships; teenagers, because they are the ones who would benefit the most from sexual health and tips and advice, and also to create a space where they can talk and where we can they can ask questions. Never, never would a teenager go into a secondary school and just go what i know what uh you we call you camping what is prep what is you know what i mean? Especially if you are gay or especially if you are a bit more sexually active than others compared to other people in the class or whatever.
I don’t feel like the schools have that safe space to deliver good sex education, so how can I do that with a piece? how can I do that with a dance theatre show? So we created a positive life: five years down the line now it is a massive party, and it is touring all over the UK from February. We’ve been doing it for a few years now. It is a house party: it is Charlie’s birthday and guests are coming and then you follow each characters through their party journey of consent, sexual health, sex education, self-love, cyber-bullying, body image; they are all the themes that teenagers that we feel we want to engage with. and kind of like poke the bear out and just challenge and nag and consent is the main one sexual health is the second one sex education gender identity well-being and all this comes after but it is still within the positive life piece.
So I’m an activist in a way that I make work about the stuff that I’ve lived, that I’ve learned and that I want to share to the world, but I’m also an artist, so I’m trying to make them beautifully engaging.
So if anybody wants to know a little bit more about this work, positive life or your work how would they how would they follow you on social media?
I think social media is the best watching at what is on Facebook https://www.facebook.com/AutinDT/ or on our website https://www.autindt.com/. If people are watching us on social media, now that you can, just click on that link, follow, know about the tour.
The really cool thing is that the dates are going to be announced on World AIDS Day today, so it is it is a brilliant occasion. We are touring in the Black Country in Walsall; we are touring in Didcot near Oxford, we are touring in Birmingham at the Birmingham Hippodrome.
In May, we are touring up north in Ormskirk near Liverpool at Edge Hill University, and we are touring in Leicester at Attenborough Health Centre.
The tour is really fun: we have seven performers, one BSL interpreter, the cast is really diverse and cool and fun and fresh and they speak, they dance, they act, you follow them around the party scene, which is great, and the most important thing – the thing that I like the most actually – we go to the secondary schools to deliver dance, spoken word and sex ed workshops, so we kind of like use dance and theatre as a way to deliver the sex ed. Not “curriculum”: our version of the sex ed so the queer is engaged through sex-positive workshops.
Right so before we sign off have you got any closing words or anything else to give a positive message?
Thank you so much for doing this. Remember: there is gonna be a broadcast on World AIDS Day, so take a moment to remember everybody who is gone, because they are important, but take care of yourself and your community. Be safe, inform yourself, read about it, get tested, keep yourself safe.
I think that is the main thing: keep yourself safe, happy and fulfilled. Stay positive. Thank you very much, that is the one pleasure.
Thank you to the LGBT community people and thanks to Birmingham LGBT for inviting us to write this blog and have this conversation.