Trans and HIV-positive: It’s time to make our case

Trans activist Juno Roche writes for The Queerness on the myriad issues associated with being a trans woman and HIV-positive.


It’s all about the numbers.

It’s quite lonely being a campaigner (if that’s what I am) who focuses on what it means to be trans and HIV-positive. It’s lonely because not many people want to engage with me or other trans women who are HIV-positive.

When my focus was on ‘education and trans identities’, people were queuing up to talk and work with me.

People sometimes say, ‘It’s great what you’re doing’, but by private message, I know the stigma of HIV is alive and kicking.

I’m currently trying to carry out some simple research about trans sex lives and safe sex provision and it’s almost like if people agree to talk to me then they have an association with HIV.

It reminds me of people worrying, in years gone by that being seen close to me, physically or even emotionally, might indicate to others that they were also HIV-positive. Being close to me won’t make you HIV-positive.

I recognise the silence.

But I don’t understand.

Like I don’t understand the PrEP focus on just MSM and not on all ‘at risk groups’.

Like I don’t understand the ‘chemsex’ debate focusing solely on MSM.

As women, trans and cis, we are written out of these debates by sexism and misogyny; narratives rooted in an almost Victorian sensibility around sex and pleasure. It would seem that no women take drugs and have sex, high-risk sex; it would seem that no women need extra support and preventative care in relation to their sexual health.

I was in a meeting recently with a group of women discussing PrEP and chemsex and between us, we had thirty-odd years of drug addiction and far too much time spent in sex work to feed that addiction.

We, it seems, can acknowledge our risks.

If you look at funding streams for sexual healthcare, it would seem that to be accepted, trans women do not have sex, at least not sex that needs any form of risk assessment, i.e. prevention (PrEP).

For far too long as trans women, we have accepted a narrative that is punishing and upholds an entirely binary notion of a linear journey to vaginal construction.

‘You’ll look real’, they say.

‘But will I feel pleasure?’, I reply.

‘You’re HIV-positive’, they say.

‘But will I feel pleasure?’, I reply.

I recently conducted a small survey (126 respondents) about trans women and their vaginas and the outcomes were depressing:

  • Most women had few positive expectations of surgery or post-surgical pleasure. It seems quite often that the awful wait and jumping through hoops to get surgery on the NHS outweigh any real expectations, questions or enquiry. Can you imagine that for any other major surgery?
  • Most women (over 65%) said they had no post-surgical sensation and expressed real feelings of sadness and depression over this.
  • A quarter of all respondents said they would have considered a less realistic vagina if it had more sensation which could lead to orgasm.

I am not trying to upset any apple carts or to remove any notions of ‘passing’ which for many are a matter of life and death; I am saying that we need to start talking about our bodies and about our sex lives.

PrEP is about prevention, and prevention where society accepts there is risk beyond the accepted condom response. I understand that gay men are still disproportionately affected by HIV (40% of all new infections) but they are not the only high-risk group. What about sex workers? What about the trans woman who has very low self-esteem and fears a violent response if she asks something of a partner? What about the woman whose partner is violent?

I do not want to divide groups; I am merely saying that surely it makes sense to campaign for all ‘at risk’ groups and for all ‘high-risk’ groups. Should we still define need by numbers or by risk assessment?

If we look at the figures worldwide then surely we can see that trans women are fighting alone, often in isolation, often rejected by society, often already at risk because of transphobia, sexism, and misogyny. Often, women (cis and trans) end up in emergency care because they were not deemed ‘high-risk’ so they didn’t see themselves as ‘high-risk’ as HIV was taking hold.

We need to make the case – our case.

Follow Juno on Twitter (@JustJuno1)

2 thoughts on “Trans and HIV-positive: It’s time to make our case

  1. I would advise both you and your trans sisters to start speaking up, get an advocacy group going and pursue more visibility. It’s your battle, you understand it better than anyone else. I can only speak for gay men – and when it comes to advice I really only want to hear it from other gay men. I have no idea of the nuances involved with your situation and so I would never even think of giving you advice..

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