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Juno is a trans woman, HIV positive & an inspiration

J Pinching 18 September 2017

 

 

They told her to leave university, she wouldn't, they told her it was hopeless, it wasn't, they told her she would die, she didn't. This is Juno.

One cannot help but be in awe of anyone that faces down stigma and emerges victorious on the other side. My guest today epitomises the strength and fortitude which sends boorish and bigoted attitudes back to the dark ages. It’s not about daring to be different, but about being yourself, as we’re about to find out.

 

What are you up to, Juno?

I divide my time between Spain and England. At my place in Spain I can write and build campaigns with no distractions. I come back to carry out campaigns in Britain, and I’ve also got a book deal and am working on some films about the trans community.

 

What is the sexual healthcare situation for trans people?

I’m a transwoman and I’ve been HIV positive for 25 years. When you’re trans and HIV you have very fractured healthcare. I would go to my HIV doctor and ask about hormones, or to my gender doctor and ask how my hormones interact with HIV medicine, and they’d say, ‘I don’t know anything about that’. I would also ask my GP how it’s possible to have safe sex as a transwoman and they wouldn’t know anything either. It struck me that the dots were clearly not joined up.

 

What are the consequences?

The rates of infection for transwomen are still very high. If you’re a transwoman, you’re 49 times more likely to contract HIV than any other group and it is estimated that 19% of all transwomen worldwide are HIV positive. From my own experience, I am quite privileged; I work, write and have access to free healthcare in England, which means my HIV meds and gender realignment have been provided. The way transwomen are treated on the NHS, however, needs considerable work.

 

How are you helping to change this environment?

A couple of years ago I looked at trans people in education; teachers and pupils. This involved putting on round tables and getting funding for outreach work. The Paul Hamlyn Foundation supported this drive and we put on events called ‘Finding My T-Spot’. This helped to push research, because there is no data in this country about trans people and HIV, and last year, I put on an event at Gilead, establishing what we needed to discover.

 

Sounds like pioneering stuff.

It was attended by Valerie Delpech from Public Health England, several senior consultants in the country, transactivists and the media. An advisory committee emerged, which looked at all the research going on involving trans people and sexual healthcare, and from that came two research projects which look at the sexual healthcare experience of transwomen in this country.

 

How has this evolved?

I am patron of the sexual healthcare charity cliniQ, one of only two centres solely devoted to trans people. I received a pot of funding, in order to do outreach work, and now we’ve trained all the GPs in the South East, and staff from several sexual health clinics across the UK. I have also made the ‘Finding My T-Spot’ cliniQ film, which is designed to highlight the work to areas outside London. I am now looking to make a film specifically about transwomen who are HIV positive.

 

How can the health risks to trans people be reduced?

People talk about trans people as being a high-risk section of society, but no one group in society is inherently risky. What does pose a risk is the inconsistencies in healthcare structures. The gaps between GP, gender clinician and HIV clinician mean they don’t have shared knowledge, and that’s where people fall through the cracks. We still have people turning up at cliniQ with AIDs-defining illnesses, because they're not being picked up early.

 

It seems that healthcare professionals urgently need an upgrade in this area.

Time and time again I’ve heard GPs saying, ‘I’ve never met anyone like you’, and I feel like saying, ‘Well I’ve never met a 64-year-old GP with those particular spectacles before’. It’s not good enough - part of their remit is to know about me, and I hope through the legacy of the work I’m doing, a more cohesive network will be created.

 

It is noticeable in the last few years that trans people have emerged from the shadows.

For a long time, we were presented as victims and even classified as having a mental illness. That made it easy for people to categorise us as second-class citizens. In turn that placed us in a very passive position in relation to our healthcare. A decade ago, trans people lost their jobs or were denied access to their children, but recently the community has said enough is enough and that there are laws to protect us. When we band together we become powerful; trans people are proud of who they are and no longer willing to hide.

 

Has this strength been fortified by the years of adversity?

It’s incredibly empowering to decide that what people see isn’t quite what you are, and make changes to address that. Subsequently, there has been a further kickback against our fight, and people want to question whether we can be ‘real women’, but I won’t go there anymore – there is more important work to be done, like ensuring people are living safe, aspirational lives. I’m not having the argument about whether I should exist anymore.

 

You’ve lived a quarter of a century with HIV, Juno, that’s an incredible achievement.

I know, I should be presented with some kind of medal, or a nice hand bag. When I was told I was HIV positive, I had a partner who was extremely ill. I was given a form, which said I was expected to live six months and entitled to death benefits. It was a time when there were no HIV clinics, just rooms at the end of long corridors. There were no nurses willing to take your blood, because they didn’t want to go near you.

 

That’s unbelievable.

People thought we were the scum of the earth. You couldn’t even get a dentist. When I did find one, it was the last appointment of the day and he would literally cover the entire dental surgery in cling film. Even friends would check which glass I was using and people like Edwina Curry were saying that no morally upright person needed to worry about AIDS. The stigma was colossal, but I’m still here, and as entitled as anyone to have dreams and laughter in my life. In a way, it made me who I am today.

 

How on earth did you survive?

I started to set myself goals. I was in the first year of university when I was diagnosed and they wanted me to leave, but I thought ‘If I’m going to die, I’m going to die with a degree certificate in my hand’. I lived long enough to get my Masters and, by that time, I thought ‘Actually, I don’t want to die’. Then the new drugs started to come out, which we could trial, and the years started to clock up. I am a positive person, and love being alive, and was like that even before my diagnosis. The world is a wonderful place and I wanted more of it. I have continued to challenge myself, like moving to Spain among the mountains, in the middle of nowhere.

 

What prejudice are you encountering in 2017?

I wrote a series of pieces that studied online dating, so I joined Tinder. As an experiment, I started by only putting an image of me on the site. As a result, I got lots of comments, mainly from younger men, who said they ‘liked older women’. I thought, ‘Bugger off’, but at least it was supposed to be complimentary. Then I added that I was a transwoman, and still received a lot of interest. Finally, I revealed I was a transwoman living with HIV, and was bombarded with anger, aggression, threats and ignorance. Instantly I became
a bad person. The stigma is still there.

 

What treatments have you been on over the years?

In the early days, I went through a whole gamut of new drugs, with all sorts of extreme side-effects. Now, it’s easy to adhere. I’ve been on Truvada and Nevirapine for years, and been undetectable and well for as long as I can remember. I’ve always been very motivated to be on top of my own care – asking questions and making sure I was comfortable with the medication I was on, and able to thrive on it.

 

When did you decide to become a trans woman?

I had made the decision years ago, but because I was HIV positive GPs and PCTs would turn me away and no one would fund the procedure. Then one day I was accepted and had the surgery. It’s incredibly liberating to feel like you’re truly being yourself. Most of our lives are segmented, blocked and labelled, but I won’t be in any kind of closet.

 

You must be proud of your part in the trans revolution.

Whenever there is a group of people that are marginalised, eventually they come together and mobilise. When the abuse stops hurting, you start to fight back and build structures that look after you, because no one will do it for you. Hopefully, through my work, it’s beginning to happen with trans people and HIV.

 

What record would you choose for the soundtrack of your life?

This sounds completely corny, but it would have to be ‘Changes’ by David Bowie. One of my dearest friends, who was among the first to die of AIDS, in the late eighties, introduced me to Bowie. I don’t miss many people, but I miss that friend’s joy for life and what they would have brought to the world.

 

It’s your last supper, what are you having?

My homemade mushroom risotto, with lots of good parmesan.

 

Sounds delicious. Goodbye, Juno.

Bye John.

 

 

Make that change

If you are a transgender person, thinking of transitioning or want more information about subgroups within the trans community there are several very
useful online platforms providing advice, support and inclusivity.

Trans adults: gires.org.uk

Advice and support: transgenderni.com

Self-help and social: beaumontsociety.org.uk

Trans law: pfc.org.uk

 

If you’re working in pharma, and you think your company could be doing more in this area, why not visit cliniQ, the pioneering sexual health centre for trans people. Head to Dean Street in Soho or visit cliniq.org.uk

 

 

 

 

 

 

 

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