For trans people with HIV, visibility means better data

Today is the international Transgender Day of Visibility and I wanted to quickly share a statement I wrote for work to mark the occasion. I also had fun designing a graphic visualising the concept of ‘trans data’! Of course, it goes without saying this post is inspired and enabled by the work of Teddy Cook, a powerful advocate for better representation of trans experience in research.

Recently Australia has witnessed an organised campaign of hate towards trans folks, seeking to deny the simple reality that trans women exist. This campaign seeks to constrain the ability of trans people to participate in public life, to use the bathroom, to take part in sport, and to be heard in public debate. On this Transgender Day of Visibility, NAPWHA says: we see you, we believe you, and we are here with you.

There is little research into the HIV-related needs of trans and gender diverse (TGD) people in Australia. A landmark study in 2018 found ‘TGD people have been erased and excluded from HIV and sexual health surveillance systems in Australia. This has contributed to a lack of evidence about our sexual health, which has meant TGD people have been excluded from strategies, services, programs and campaigns. Despite this, we have continued to organise, strategise and mobilise for action.’ Today, NAPWHA calls for enhanced and ongoing efforts to ensure that TGD folks are made visible in the data sources that are a precondition for funding HIV programs and services in Australia.

Artwork: Daniel Reeders (2023). Please do not use without citation.

In that study, 2.6% of trans women participants reported living with HIV (Callander et al, 2018). Yet, in some Australian states, systems that capture clinical data force trans women (and nonbinary persons assigned male at birth) to be ‘recoded’ as men who have sex with men. It means we do not have an accurate picture of the trans positive community — its size, age, gender breakdown, years living with HIV, transmission routes, and most importantly for NAPWHA, the unmet health needs arising for this group.

On behalf of NAPWHA and our members, if you are a trans person living with HIV, here is an open invitation — make yourself known to us; let us get to know you and help us better understand how we can serve you. Join our call for better data and sharing of stories that give us a clearer picture of the positive trans community in all its diversity. Together we can challenge the invisibility and erasure that surround trans people with HIV.

Announcing The Firehose

I made a linkblog. I know, right? It’s like time travelling back to 2006.

The Firehose is a collection of spicy takes and thoughtful features, updated frequently. I’m a voracious reader and it’s a way of capturing and sharing what I’m reading. For a long time I shared these links on social media but I recently ditched twitter and the Facebook algorithm has become particularly unfriendly.

A picture of a red fire hydrant with brutalist stencil text in red saying 'The Firehose.'
Photo by Aleksey Shkitenkov at Unsplash

At the moment I am trying out Flipboard Magazines as a way of sharing links, because nobody needs another e-mail newsletter in their inbox!

(Unless it’s by Ann Deslandes, Erin Cook, Anne Helen Petersen, or Jess Ho.)

As you can see, the format is a lot like Pinterest, with tiles for each story:

Flipboard has a great app for browsing content but you can access The Firehose on the web — for free — without having to install the app.

Not feeling Pride

Sydney WorldPride 2023 begins this weekend and I am not feeling it.

Late last year I was conscious of surfing right on the edge of burnout. We’d plunged straight back to work after two years of pandemic disruption without any real pause to stop and interrogate what it was we lived through. We tried to maintain the same level of productivity without acknowledging there was something a bit manic about the level of output we delivered during the pandemic. Everyone I know was battling burnout to some degree or another. We went through this mass-traumatising event and there’s been no collective reckoning with what that means and what it did to us.

And Pride comes with a degree of compulsory affect that is difficult to maintain when you’re on the verge of burning out. Pride is upbeat. If I had to assign Pride a texture, it would be shiny. Pride is inescapable, judging from the corporate ad campaigns emanating from Uber and Telstra and American Express across all the apps and websites and social media and public spaces I frequent. Pride is feature-length articles in broadsheet news media negotiated by PR companies promoting first-person narrative campaigns on tiktok. Pride celebrates human rights and a sense of inevitable social progress. Pride is fucking exhausting.

Sydney Opera House laser-lit in Progress Pride colours (SBS)

Forgive me, I’m a queer about to turn forty-two and I’m just not feeling it.

Style editor at Fairfax, Damien Woolnough, had a catastrophically bad go at articulating his own not-feeling-it. He lacked the range. I would express it differently. It’s not that there’s too many drag queens in the promotional materials. (I don’t even understand the concept ‘too many drag queens.’) But WorldPride isn’t queer enough.

And I realise this is a cliché — queer people are always going around saying what or whomst isn’t queer enough. And there’s often a lack of specificity about what they mean by ‘queer.’

I describe queer as a coalitional politics among sex and gender undesirables born of the recognition that we are all getting fucked by the Right. It is not an essentialised identity but a practice of community across differences in sexuality, gender identity, disability, embodiment, sex work, drug use, etc.

My problem with Pride is the way it strips out all the politics we are fighting, as queers, to bring into public conversation. It papers over them with its faith in the discourse and legal process of human rights, and its confident expectation that social acceptance of sex and gender diversity is inevitable in the end. It is liberal centrism in a nutshell and it frowns on the queer critique of the Right. Pride turned up after the really ugly battles had been fought and won and declared itself the victor, thanking liberal centrists and respectability politics.

I pored over the WorldPride calendar looking for events that had a queer vibe. I went to the Queer Sydney Reading Group at The PARTY exhibition at UNSW Galleries and — as always — it was great. I’m booked in for Blessed Union at the Belvoir and I am looking forward to seeing the Dyke Bar exhibition at the National Art School. I’ve registered to watch the Mardi Gras parade for the first time in my life, something made possible by a partnership between Club Cindy and People with Disability Australia. I’m attending Fair Day tomorrow in a gorgeous dress. I’m walking across the Harbour Bridge with two lesbian friends. So don’t get me wrong — I am making the most of WorldPride, and my journey through the WorldPride calendar is a celebration of queer coalition.

But amidst all the rainbows and corporate advertising, I fear an opportunity has been missed. First, I wish for something like the two-day Queer Thinking festival that Maeve Marsden and Nikki Stevens organised in 2018 and 2019. Not a conference with a ten minute slot for every visiting LGBT luminary working in the UN human rights system. Rather, a celebration of queer critique that provokes its participants to consider how we can live and protest in community with each other, celebrating our differences, in effective opposition to the Right.

Second, and this would have to be part of such an event, we need to be talking about how we protect trans communities from attack. It feels bizarre to me to be celebrating Pride, which sees progress on LGBT rights as inevitable, at a time when events in Australia, the United States and United Kingdom tell us that every single thing we’ve achieved can be undone in a matter of years, and simply because our putative liberal allies — the Guardian, the New York Times — can’t get their heads around the idea that trans people are just trying to live our lives. In the space of five years we’ve gone back to the Right calling gays ‘groomers’ — and the liberals are saying ‘but they’re giving hormones to kids.’

These are battles we thought we’d won and done with — Section 28, anyone? And they’ve come back around because the people whose support we thought we had in our pockets were easily swayed by liberal transphobia. We are discovering that court victories and legislative reforms are easily reversed if we don’t also win and keep winning the cultural battles. These are the battles that queer politics draw to our attention and demand we address — together.

I came out and all I got was this lousy ‘menty B’

As September rolled around I was anticipating the publication of an essay in Meanjin. It’s a reflection on what happens when you don’t tell your story. I write about being diagnosed, in the space of a few years, with an alphabet soup of mental illness: ADHD, bipolar type 2, complex PTSD. I was ‘out’ about living with PTSD and had no issues disclosing the ADHD, but I held back on disclosing the bipolar diagnosis while I worked on recovery and grappled with the stigma. As I describe in the essay, the problem with leaving out key moments that inflect your whole life narrative is that ‘more and more of your story becomes untold and untellable.’

Continue reading “I came out and all I got was this lousy ‘menty B’”

New article: Tackling structural stigma

Today I’m attending the Heart of Stigma pre-conference, organised by the International AIDS Society, at the AIDS2022 conference in Montréal.

I’m a member of the Heart of Stigma community of practice, whose leaders have just published a special edition of the Journal of the International AIDS Society focused on tackling HIV stigma.

The special edition includes my latest publication, co–first-authored with Prof Graham Brown, along with colleagues including Aaron Cogle, Brent Allan, Chris Howard, John Rule, Susan Chong and Deborah Gleeson.

In the article, we argue that peer leadership practices can both challenge and reproduce structural stigma, and that using a complex systems perspective can help us identify the potential pitfalls that need to be navigated to achieve the meaningful engagement of people with HIV.

Free to access:

Does monkeypox discourse stigmatise gay and bisexual men?

I made a quick video addressing this vital but vexed question.


Link & Phelan (2001) ‘Conceptualizing Stigma’ in Annual Review of Sociology.

Parker & Aggleton (2003) ‘HIV and AIDS-related stigma and discrimination: a conceptual framework and implications for action’ in Social Science and Medicine.

Scambler (2009) ‘Health-related stigma’ in Sociology of Health and Illness.

Scarce (1999) Smearing the Queer.

We ought’ve known

I’m quoted in a short piece this week by Josh Nicholas on the Guardian datablog, arguing we could have predicted the local government areas hit hardest by the Covid-19 pandemic — before the second wave outbreak.

About a week prior I undertook a similar analysis of the Sydney outbreak, using maps and data from the Social Health Atlas published by PHIDU. Here’s an expanded version walking through the interpretation and findings.

Step 1: Mapping Disadvantage

This map shows local government areas (LGAs—basically council regions) shaded according to their standing on the ABS’ Index of Relative Socio-Economic Disadvantage (IRSED). Darker = more disadvantage. I’ve highlighted the Sydney urban LGAs that are more disadvantaged than the Australian average. They form a recognisable clump in Sydney’s western suburbs.

A map of Sydney's LGAs shaded by relative socio-economic disadvantage (IRSD).

And here’s a plot of the IRSD scores:

A chart of the IRSD scores for all the LGAs in urban Sydney

The table identifies the LGAs we’re talking about:

A table of the IRSD scores per LGA. See below for list of the highlighted LGAs on the map above.

Are those LGAs beginning to sound familiar from the daily pressers?

  • Fairfield
  • Cumberland
  • Canterbury-Bankstown
  • Campbelltown
  • Liverpool
  • Blacktown
  • Burwood
  • Penrith

In case they don’t, maybe some maps will jog your memory. Here’s the same cluster from the NSW Government’s LGAs of Concern web page:

Here’s the same map as rendered by Nine News. Great work, guys.

So without any specialised analysis we can see that Covid-19 incidence correlates with disadvantage.

That’s not a one-off. We saw the same thing in the Melbourne analysis:

Source: Josh Nicholas, The Guardian (Fri 24 Sep 21)

So this poses an important question. Could we have used this knowledge to intervene ahead of the outbreaks, preventing cases and saving lives? That depends on whether we should have known that health and illness often correlate with disadvantage at an area level. Here’s the data on that question.

Step 2: Other health outcomes

In this section I’m going to take that map of disadvantaged LGAs and put it alongside maps of differences in other health and illness outcomes, such as participation in cancer screening, so we can see whether the correlation holds.

I freely note that I’m cherry-picking for significant differences, and that’s fine: we only need to see this pattern a few times to be put on notice that it might recur with Covid-19, and make enquiries and take precautionary measures.

First, participation of eligible women in cervical screening (top map) is shown above a map of relative disadvantage (the map from earlier in this post).

You can eyeball the two maps and spot a strong negative correlation. Helpfully, the Social Health Atlas offers a simple regression:

There’s a 70% correlation, suggesting* relative disadvantage explains about 60% of the total variation in cervical screening participation rates.

(* This is just a two-variable linear regression—a proper regression would bring in other variables and interactions that would no doubt reduce this score.)

For breast screening the pattern is the same but the correlation is weaker, only 30%. But for bowel screening we have a 50% correlation (30% explained):

I want to conclude by showing one obvious and one counter-intuitive example.

We know that non-communicable diseases like heart and artery disease, lung cancer, and diabetes all correlate strongly with disadvantage. It’s tempting to commit fundamental attribution error and assume that’s because poor people choose to smoke and eat bad food. And those are factors in causal pathways. But there’s a more nuanced explanation that I’ll cover in the conclusion to this post.

Not surprisingly, diabetes incidence correlates with disadvantage:

But when we come to mental health, the most disadvantaged areas have lower rates of diagnosed mental illness. Look:

The regression suggests there’s just 10% correlation between mental illness and disadvantage. Looking at the map, it’s likely that is because some relatively disadvantaged areas have high rates of diagnosis (top rim of LGAs), while others — the cluster I’m focused on — have very low rates.

Step 3: Interpretation and Discussion

Takehome: had anyone in the NSW Government talked with a health geographer for even five minutes, they would have known to target what we now call ‘LGAs of Concern’ with early intervention to promote understanding of restrictions, vaccine uptake, and Covid-safe work practices.

And that’s the charitable interpretation. The bleak interpretation is that many of my colleagues in public health view targeted outreach and early intervention as ‘special treatment’ for ‘people who should pull their own weight.’ Protestant values run deep in our health and social welfare responses. So they might in fact have considered taking those steps and decided against it.

(In case you think that sounds bitter, I have a book for you. I wouldn’t be working in health promotion if I were not a fundamentally optimistic person.)

We need to think carefully about some of the differences in health outcomes I’ve highlighted here. Many reflect differences in access to care. For instance, I don’t think people in Sydney’s West are more ‘mentally healthy’ than the rest: I think they have trouble accessing affordable mental health care, and you need that in order to get a mental health diagnosis in the first place.

But the pattern recurs with other outcomes like bowel cancer screening where testing is free and they literally post a test kit to your house. So it’s about where disease prevention and health promotion fit in lives under constant pressure: working in casual jobs, multiple jobs, no control over shifts, with family relying on your income. It’s about demands on your time as much as lack of money.

We hear demands for everybody to ‘JUST STAY HOME’ from twitter users who get their dinner and groceries delivered and don’t notice the contradiction in that. Our society depends upon a cohort of essential workers copping it in the neck. People who lack control over their lives can’t say no to working in unsafe conditions. They live where rents are cheapest and that drives the patterns we see in the geography of health and illness. We can spot those patterns from the moon, but we never intervene in ways that make a difference, because it would interfere with the exploitation dynamic that drives our capitalist economy.

But the migrant communities we’re (largely) talking about are incredibly resilient. They’re making lives in Australia out of a patchwork of income sources while supporting each other, bringing up kids and caring for elderly relatives here and in other countries. The best thing we could do is resource them to promote Covid-19 vaccination through their own activities and communication channels. We shouldn’t see them as targets or problems.

Further reading

Equity is not an afterthought

Yesterday the New South Wales government announced it had requested 300 troops from the Australian Defence Force to assist in policing compliance with mobility restrictions and masking requirements in eight local government areas (LGAs) targeted with the most intensive form of lockdown.

This will be NSW’s ‘Nine Towers’ moment. I’m referring to Victoria’s lockdown of nine public housing blocks with zero notice and zero wraparound support. It crystallised distrust in the Department of Health and Human Services, as it then was, among people most vulnerable to the burgeoning second wave outbreak.

The LGAs in question are home to many of the essential workers who do the back-breaking work that keeps supply chains operating — ensuring there’s a steady supply of food on the shelves and toilet paper to run out of.

The LGAs have high rates of people whose first language is a language other than English. Many are migrants from countries with recent history of wars and civil war. Many have come from authoritarian regimes where the government showing up at your door means something very bad is about to happen. Young residents in particular suffer disproportionate rates of street policing.

And we’re about to put police and defence force personnel on street corners, and perhaps task them to go door-to-door policing restrictions on gatherings.

In other words, because of pre-existing vulnerabilities, the intervention strategies chosen for the Eight LGAs will have serious negative consequences.

I’ve already seen articles discussing the public health ethics of this response. But self-appointed public health ‘hard-heads’ have little truck with ethics. They see efficacy as the point of public health, and ethics and equity as secondary considerations, something to worry about when the crisis is over.

Equity is distributed efficacy

Health equity is often described using Whitehead’s definition: an inequity is a difference in public health outcomes that is preventable and therefore unfair. It begins with data and ends with a moral judgement: is this fair?

I propose a more condensed definition: equity is the distribution of efficacy.

The differences in outcomes are stark: people in the Eight LGAs are far more likely to acquire, get sick from and transmit Covid-19. Because we’re dealing with a highly contagious pathogen, the difference in outcomes poses a constant risk of transmission elsewhere in Sydney.

Never mind fairness: inequity is a matter of life and death.

There’s a clear mechanism behind this difference in outcomes: residents have communication requirements that we are failing to meet.

English speakers can easily tune into the 11AM press conference and find out what we need to do to protect ourselves and others. But until this week, nobody was translating the 11AM press conference into written languages other than English. You could find posters with basic messages about hand-washing but nothing explaining why we need to minimise mixing between households, in other words, the rationale behind the restrictions.

So we have an efficacious intervention — communication — that we are presently distributing to people who have the least need of assistance. And we’re using surveillance and punishment to respond to people with the greatest need of effective communication. The interventional math doesn’t add up.

That’s the kind of clarity we need to demand from the self-appointed ‘hard heads’ of public health. In a pandemic, ethics is not an afterthought: fuck it up, and the unequal distribution of efficacy will come and fuck you up.