Losing lives in the gap
This Pride month it’s time to understand that the health inequalities faced by queer people who are also members of the global majority are issues of racial justice, writes Dr Rob Berkeley, director of BLKOUT UK, a community benefit society for Black queer men.
Last month the annual HIV report from the UK Health Security Agency (UKHSA) annual HIV report confirmed a pattern that even the most wishful post-racial thinking struggles to deny. The good news is that headline diagnoses are down. But if you look beneath the headline, you find that the good news is not evenly distributed: the rate of decline among minority-ethnic gay and bisexual men runs at roughly a third of the pace seen in the overall population.
I sat on the 2020 HIV Commission. It was a real privilege to engage with so many visionary clinicians, activists and carers to contemplate how an end to HIV transmissions might come about. We were blessed to have access to the best advice from across the sector.
As co-chair of the advisory group, senior public health expert and infectious disease epidemiologist Kevin Fenton’s advice was always worth paying particular attention to. As it is when he draws attention to the intersectional epidemiology. The argument pressed by commissioners then – that progress to zero new transmissions by 2030 would not be reached unless the response was racially equitable – is now the data's argument, too. There is no satisfaction in being right about this.
Reliable data collection and analysis of minority ethnic queer experiences remain rare. One of the few datasets through which intersectional analysis could be conducted has failed so far to be a rallying point for the expression of solidarity. Let’s get real this Pride month and understand that the health inequalities faced by queer people who are also members of the global majority are issues of racial justice.
‘Sexuality and gender identity remain outside the architecture’
Race-equality work has, over the last decade in particular, taken the race-gender intersection seriously. The Runnymede Trust’s Misogynoir in the Workplace: Understanding the Experiences of Black Women in Leadership Positions report is one of several examples – built around a concept that is itself precise enough to organise evidence around. The NHS’s belated reckoning with Black maternal mortality is another.
The case for race-and-gender as co-constituting axes of analysis no longer needs making in the way it once did. That is real progress – hard fought for and not to be complacent about – but progress worth naming as such.
But the progress has, for the most part, stopped there. Sexuality and gender identity remain outside the architecture. Ethnicity is the variable; gender is now sometimes the variable; other axes by which lives are organised – sexuality, gender identity, disability, class – are gestured at in the framing and then dropped at the point of the data cut.
Most NHS ethnicity-monitored reporting does this. The Race and Health Observatory’s programmes, important as they are, sit on top of an evidence infrastructure that does this – perhaps explaining why, five years in, LGBTQ+ lives are not yet even mentioned anywhere on their website.
The result is predictable and structural. We can describe the broad outline of racial disparity in health, education, employment and criminal justice. We cannot describe, with anything like the same resolution, what happens at the intersections where some of the steepest gradients live.
The Public Sector Equality Duty makes intersectional analysis a legal requirement. The evidence infrastructure we have built to discharge it makes intersectional analysis at best an afterthought. Lives are lost in the gap.
The UKHSA’s numbers are one instance. There are others – Black queer men's mental health outcomes, Black queer young people's experience of school exclusion, the disproportionate exposure of Black trans women to violence. The data, where it exists at all, lives in scattered third-party reports, doctoral theses, community surveys. It is not in the architecture.
‘The structure matters’
Twenty-five years since my first volunteering role in Black queer men's health promotion, I have spent the last decade with colleagues at BLKOUT listening to Black queer men, building something the race-equality centre has not built – structures that make the case for data collection stewarded by those whose data it remains.
BLKOUT is a community-owned cooperative – a community benefit society – for and by Black queer men in the UK. The structure matters. So does what we are now building inside it.
Critical Frequency is a five-year, network-positioned mental health and community-infrastructure programme designed and led by and for the community it serves. It learns from the HIV/AIDS response in its population-health methodology – trauma-informed therapy understood as a collective good, behaviour change through complex contagion rather than broadcast campaign, community-led evidence and participatory analysis rather than extractive surveillance.
It treats community ownership of data not as a wrapper around a more important methodological core, but as the methodological core – otherwise visibility easily becomes exposure.
You can see the framing of this perspective at critical.blkoutuk.com. I would ask you to look, not as an act of solidarity but as an act of professional curiosity. This is what data infrastructure could look like when a community builds it collaboratively.
Setting the table
It’s Pride month. Who doesn’t love a rainbow? A glittery unicorn? In addition this year, why not change something that might outlast the festival season.
Race-equality colleagues – in research, policy, funding, commissioning – can stop treating queer life as the LGBTQ+ sector’s portfolio and treat it as race-equality work’s missing axis. The test for every dataset that passes through your hands – commissioned, funded, published, peer-reviewed – is whether ethnicity, sexual orientation and gender identity (as well as disability, age and class) can be cross-cut in the analysis. Where they cannot, the follow-on question is whose responsibility the gap is and what it would cost to close. Both questions have institutional addresses. Send them there.
Most race-equality organisations monitor race for their own staff and beneficiaries; few cross-tabulate by sexual orientation. The internal audit is a short piece of work. Its findings tend to surprise – and what an organisation does with those findings is what distinguishes single-axis-by-default from intersectional-by-design.
Racial justice reckoning with realness is overdue. Analysis has at times been too narrow – and the answer to narrowness is not dilution into a generic equalities frame. It is depth. Intersectional evidence is not a guest at the race-equality table. It is the table, properly set.
Visit critical.blkoutuk.com and consider what the table looks like when it is set for the lives that we have allowed to fall through.
Dr Rob Berkeley MBE is founding director of BLKOUT UK, a community benefit society for Black queer men in the UK, and sat on the 2020 HIV Commission. Critical Frequency is BLKOUT's community-owned data programme. Reach him at rob@blkoutuk.com.
The views and opinions expressed in this article are those of the author(s) and do not necessarily reflect those of the Runnymede Trust.
Join the fight for racial justice: support the Runnymede Trust’s work by making a donation.
