Does monkeypox discourse stigmatise gay and bisexual men?

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

References

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.

Do we need a Grim Reaper campaign for Covo?

That’s an emphatic no from me.

I study how communities mobilise in response to emerging health and social issues. I’ve worked in HIV prevention for seventeen years and I write the world’s longest-running (and surely the only) blog about stigma and public health. So I know a little about fear campaigns, and I’m alarmed to see people calling for a return to the Grim Reaper campaign to encourage vaccination for Covid-19.

In a nutshell, fear campaigns can work reasonably well when you want people to stop doing something — like smoking or driving while drunk. But when you want people to take positive action, adding some new behaviour to their repertoire, the last thing you want to do is mentally ‘tag’ that item with alarm.

Research by psychologist Kim Witte and her colleagues has demonstrated there’s a quirk in how people process fear campaigns. If you’re going to scare someone, you need to offer them a solution — a way to avoid the scary thing. (That was the glaring flaw in the Grim Reaper campaign, by the way.)

If people don’t believe the solution works, or they don’t believe they can carry it out, Witte’s research shows audience members engage in reactance, or in other words fear management, rather than changing their behaviour. That can look like denying the facts, questioning the authority of the campaign — does that sound familiar? It’s what we’re seeing already on social media.

In a nutshell, we still need an effective and coordinated program of activities to explain to people what vaccines can and can’t do for us. Without that understanding and confidence in the solution, adding fear to the mix is just pouring fuel on a fire of uncertainty and misinformation.

The Grim Reaper campaign ran for three weeks in 1987. People think it was effective because they remember it clearly, but that’s because it was unhinged. What’s the connection between condoms, AIDS and ten pin bowling? No idea.

What people don’t remember is the Hawke government convened a National Advisory Committee on AIDS (aka NACAIDS) that ran (in various forms) from 1984 to 2003.

We remember Ita Buttrose, a charismatic and effective communicator who was head of the Daily Telegraph at the time of her appointment as chair of NACAIDS.

But we don’t remember that NACAIDS ran a whole program of education and communication activities, not limited to mass media campaigns, that helped the Australian public understand that condoms were the answer.

As the Covid-19 outbreak intensified, the government appointed a bunch of its mates to head up a commission to coordinate business responses to the crisis. It is long past time to establish a National Covid-19 Commission with similar powers, functions and arrangements as NACAIDS. We need to stop looking for ‘the message’ on vaccination, and start asking ‘what ongoing, well-funded program of activities will be needed to bring up vaccination rates?’

Feature artwork: Ron Tandberg/ Department of Health, Housing and Community Services (1991) via MAAS

Fully funded

On Saturday, I launched a fund raiser to help me undertake Mental Health First Aid instructor training. I’m so pleased to announce it has been fully funded! Thank you for your generous support, both donations and sharing my post far and wide. I appreciate the trust you’ve placed in me, and I’ll share updates as I undertake that journey so you can follow along. Much love, Daniel.

Graphic image of a ribbon saying Thank You

Thank you

— Ann Deslandes — Anthony Davis — Anthony MacAli — Ash Keeling — Bernadette Reeders — Bill Jesdale — Brigette Sharp — Bronwyn Donaghey — Daphanie Teo — Dorothy Broom — Elizabeth Humphrys — En KW — Ern Reeders — Euan Troup — Ginevra Martin — Helen Marshall — Jan Tully — Jarvis Chen — Jason Appleby — Jenny Walsh — Jerard Ng — Jo Szczepanska — Julie Miller — Kat Snow — Kathleen Neal — Kenton Miller — Lynne Gunn — Mark Bahnisch — Mary Gardiner — Natalie Hendry — Paul Kidd — Philip Saggers — Pria Holmes — Roj Amedi — Ruth Sayers — Sarah Kennedy — Stacy Smith — Stephanie Russo — Tim Vernum — Trent Yarwood — Zoe Bowman —

Help me take the next step

I’d like your help to take the next step in my mental health journey.

I’ve been writing and tweeting about mental health for years. Always from a mixed perspective, partly from my training in health promotion and partly as a person living with mental illness.

Sometimes, I talk about the self-care strategies that have worked for me; other times, how stigmatising discourses and service gaps limit the life chances of people with mental illness. But I’ve never made any move to formalise my status in the mental health advocacy ‘space.’ Until now, I was never sure how I could make a meaningful contribution.

I think I’ve found that role.

In my travels (and travails) as a postgraduate student, I meet academics and research training staff who feel very uncertain supporting students who may be facing mental health issues.

I see a lot of effort put into promoting mental wellbeing — particularly self-care and stress reduction — leaving mental illness as the elephant in the room. Simply listing the number for Lifeline, or the student counselling service, isn’t enough.

This is personal. During the second year of my PhD, I self-referred for an assessment that revealed a serious and permanent mental health condition.

That was a painful revelation, because I’d been living with that condition for sixteen years. Just white-knuckling my way through life. There were many opportunities for diagnosis along the way, but I missed out—despite being highly motivated and health literate.

That’s where Mental Health First Aid comes in.

I did the Mental Health First Aid training in 2012 as part of my work in HIV prevention. It empowers people to follow up on the signs that someone is experiencing distress, and provides the knowledge and skills needed to make an effective referral. Sometimes, it takes another person to spot that you’re in deep waters and to throw you a lifeline.

With your support, I will complete the Mental Health First Aid instructor training in 2021, which will enable me to deliver MHFA training myself.

My goal is to empower people who support postgraduate students to recognise the signs that stress and distress may have tipped over into something requiring expert assistance.

The program costs $3,750 and takes five days face-to-face. Instructors must then deliver at least two training programs per year. I’m seeking donations via PayPal to undertake the training and offer my first two training programs for free. This will allow me to gain experience and to undertake consultation on the specific needs of HDR supervisors and research training staff.

Your donation will help me find my voice as an advocate and enable me to empower others to support postgrad students doing it tough.


Update Mon 15 Feb ’21

With your incredibly kind support, I have hit my target and donations are now closed. Thank you for your generosity and the trust you’ve placed in me. Over the coming weeks I’ll post updates as I start on that journey.

With much love and gratitude,
Daniel

Uncle Jack

once upon a time someone felt your loneliness. find ancestors. become their living memorial. — Alok Vaid-Menon

Before I left for Montréal, Jack was insistent that I visit him. He’d been crook for a couple of years, by then, suffering neurological episodes and ongoing problems with his memory and balance. When I visited, he was in good spirits, hopeful that a recovery was on the cards. He felt that Vitamin B12 deficiency was the most likely explanation for his condition, and I think he saw that as easily reversible. Whenever we spoke, I emphasised that you can learn to live a meaningful and happy life with brain injury. And he was, last we spoke, finally beginning to understand his time working for the Kirby Institute in the past tense, with sadness rather than an ongoing sense of injury.

On Jan 8th, 2019, I woke in the silence of a heavy snow day to a message saying Jack had died after a heavy fall, at home, with his beloved terrier Copa by his side.

For a few months after that, I was numb. I wanted to write about Jack. I was also resisting that with all my might. When I write, I tend to lose the living memory of the subject matter, instead remembering the words I wrote, which are inevitably inadequate. When writing about trauma, that’s helpful. For grief, it can feel like losing a loved one all over again.

And Jack was a loved one. I call him my gay uncle, a member of my queer family. When I first met Jack, he was the quiet, polite research assistant of a social researcher I knew. Which is to say, I hadn’t really met Jack at all, yet. Around 2008, everyone in the HIV sector simultaneously joined Facebook and friended each other. Jack took to Facey like a duck to water, using frequent status updates to tell stories and spark up conversations that could pivot in a second from ribald to reflective and back again. He shared soulful pics of Copa, his constant companion, and near daily #JMOGs, ‘moments of gratitude’ that often featured the sun setting over his balcony, hammock and frangipanis. Alongside Copa, and his work at the Kirby Institute, Jack’s great loves were his friend and former colleague Brigette, and her son Aiden – and he delighted in their adventures together to Uluru and Italy.

Back to the uncle bit. When I moved to Sydney in 2017 for PhD fieldwork, shit went sideways, I barely knew anyone in Sydney, and Jack was there for me. But he’d been there for years before that: when I was living with treatment-resistant depression and social anxiety, Jack was there on Facebook, always willing to have a chat. It’s always been pretty clear that, if I’m not on the spectrum, I live near the on-ramps, and he never, ever took any notice of that. Being loved for who you are is a life-sustaining gift.

I will remember two things about Jack. His politeness, and his fierceness. He was proud that he never blocked anyone on Facebook, never made his posts private, always tackled disagreement with implacably stubborn Southern politeness. And the fierceness with which he loved life, a drink, a joke, a sexy bloke, his work, his adopted family and his friends. Even as his memory and his balance got a bit wobbly, nothing could change that about him. I miss him every day.

Posse of bullies

Content warning: vivid description of transphobic assault, discussion of bullying, PTSD and suicide.

This weekend the SMH ran an anonymous piece that claims to be written by a mother whose child is preparing to affirm a different gender, worried that the process makes it too easy. Then Chris Uhlmann, federal political news director for Nine, which includes Fairfax, tweeted an entirely predictable attempt to stir up Day Two controversy, referring to trans folk who objected to the piece as a ‘hysterical posse of bullies.’ It’s cynical as fuck.

Chris, let me tell you what a posse of bullies looks like.

Tonight, I was sitting at a bus stop in Newtown by the station, on my way home from work, waiting for a bus that threads its way through Marrickville. A spray of phlegm lands on me. I look up and there’s a chubby kid on a scooter, maybe 14 years old, and he’s glaring at my coloured nails. He scoots around the bench and stands right behind me. I stand up. I’m ready to put him on blast. But I can see he’s with four mates and they’re already arcing up. Shaken, I turn and walk up the road to the next stop.

I came out as nonbinary in 2017 and I came out publicly as trans last week. Smart friends of mine define trans as identifying with a gender other than whatever you were assigned at birth. Even though I understood that definition at an abstract level, it took me a really long time to identify as trans myself, because I don’t experience the kind of daily hostility and outright violence many trans people live with – particularly trans women. I’ve always sought to be careful not to claim to speak for experiences I don’t share.

But when I faced that question, I could recall a never-ending torrent of micro-aggressions, dating back to early childhood and coming from women and men alike, intended to correct my performance of masculinity. Nothing will ever match the relief I felt when I ‘declared bankruptcy’ on masculinity. Not all the aggression was micro, either — I was bullied so severely at school I wound up with PTSD. Many trans and gender diverse (TGD) kids don’t make it through: this group has the highest rates of self-harm and suicide of any sub-population. The increased risk shrinks dramatically when kids are supported to affirm their gender.

So when Chris Uhlmann talks about trans people and allies tweeting their disagreement as a ‘hysterical posse of bullies,’ I’d like to draw the conversation back to the ugly fact of actual posses of bullies and the damage they can cause. As that anonymous article demonstrates, the parents of trans kids can sometimes be their worst bullies — insisting their life should be made harder just in case it’s possible to coerce them back onto the straight and narrow.

Denin Lawley on Unsplash

Nobody at Fairfax seems to have stopped and thought, if your child is trans, that’s a sickening thing to write about them. Responding to some firm but reasonable tweets, editor of The Age, Gay Alcorn, took the article off that masthead’s online presence, acknowledging it was insensitive to publish it in the same week as writer Bridget Flack has died.

However, as my own experience might demonstrate, trans and gender diverse kids are always under attack — initially for ‘failing’ at their assigned gender, and when they affirm a different gender. When is it ever okay to tell the parents of vulnerable children that it’s okay to doubt them, okay to dream of making their path more difficult?

Coping without change

A few years back I was diagnosed with a serious mental illness. I couldn’t metabolise the first medication I tried and its toxicity caused a mild brain injury. I was half-way through a PhD and I should have taken a leave of absence, but I kept going, even though I was not getting much work done. Instead, for about 12 months, I was just getting through the days, waiting for change and unable to get much done. I’m seeing my friends in Melbourne suffering from something similar as the outbreak and lockdown grind slowly onwards. Our federal Deputy CMO was asked this week for tips on maintaining mental health during the crisis, and, caught on the hop, he recommended making the bed every morning. I wanted to share some notes from my own experience and an engaged Buddhist perspective on coping when a painful situation does not let up. 

I am not going to recommend mindfulness. Under those conditions, if you can concentrate at all, mindfulness meditation is just going to make you vividly aware of how terrible it feels in your body right now. Instead, I suggest the heart practices, including metta meditation. Now, metta gets a bad rap. The translation of metta as ‘lovingkindness’ makes it sound like New Age positive thinking. People misunderstand it as sending out good vibes to all living beings, rather than finding inner warmth. The commonly-used guided meditation starts with finding warmth towards yourself, which is, for me, the hardest thing of all. So this is an awkward recommendation to begin with, but this practice will make you feel better. Start with Tara Brach here.

Next up: self-compassion, but make it practical. This thing is not only disrupting your life, it’s disrupting the coping strategies you normally use as well. For me, I’d normally watch intense long-form dramas to distract myself, but in 2017, I was struggling to follow the plot. I discovered it’s easy to get even more distressed, feeling like now you’re failing at coping. I had to change it up, watching comedy series with short episodes that I would never normally be into. I had to grieve the loss of rituals that normally brought me peace, like baking and cooking. Until I did that, I’d buy heaps of groceries, let them rot in the fridge and feel guilty about it. It took some work before I could let myself order frozen meals for delivery, even though I knew this was more practical than UberEats. Self-compassion isn’t letting yourself go because life is hard; it’s letting yourself feel what you’re feeling and keep going.

Speaking of the body… it needs movement. I learned to do as much as I could do. Some days that’s a walk around the block. Some days I made it to the gym, and I thought about what I did there in terms of stretching out and limbering up, rather than burning and building (metaphors…). Getting sun and air on your face, oxygen deep in your lungs, getting a little flush on, getting rained on — they’re all ways of bringing you out of rumination and back into your body in the present moment. There’s a podcast called The New Psychology of Depression by Mark Penman and Danny Williams, arguing rumination is obsessive, discrepancy-focused thinking, often stuck in the past or worrying about what might happen. Trigger warning: their solution is mindfulness meditation. But the concentration practices are not the only way of getting out of your head and back into the present. 

Lastly, make appointments earlier than you think you’ll need them. Make a regular appointment and keep it. There is no virtue in pushing on through the pain. Waiting until you’re really in trouble can complicate your condition and make recovery much harder. (I know this first-hand.) If you have reservations about diagnosis and medication, that’s understandable. As anyone in the mental health community can tell you, people can get stuck in (or on) these things. If your GP listens to your experience and suggests there’s some depression, it can be helpful to take a short emotional holiday with a ‘beginner SSRI’ such as Lexapro, which is known for numbing people out a little. Emphasis on short: months not years. The goal as I see it isn’t ‘treating a disorder’ — there is nothing disordered about feeling depression under these circumstances — so much as giving you a circuit-breaker on painful and ingrained patterns of thinking/feeling. 

Heads up: when you start an anti-depressant, particularly an SSRI, there’s a small but well-known risk of tipping into agitated distress that is a known risk factor for suicide. If this happens, you go to A&E immediately for a Valium and stop taking the medication. I would always recommend telling someone who knows you well that you’re starting new meds so they can check in on you occasionally. I owe my ‘Aunties’ Zoe and Sam huge love for doing this for me, when I was titrating slowwwly up to an effective dose of the anti-depressant that is the backbone of my medication combination.

In my last post I wrote about how we define disability. I copped some flak for my suggestion that people with disability can make coalitions with people who are disabled by other forms of social discrimination, particularly racism and queerphobia. One guy huffed that abled people can’t possibly understand, but if that’s the case, I wonder, why are we constantly telling them our stories? My sense is that many people under lockdown in Melbourne are experiencing a depression familiar to many people with disability, realising either that our lives have changed for good, or that we are trapped within society’s expectations of and plans for us. And I’m offering these suggestions as a form of encouragement. Not all problems are fixable, but if we are lucky, we live through until our possibilities open up again.

What is disability?

I was talking today with a friend about our shared reluctance to access disability services as people living with mental illness. There is both internalised and anticipated stigma attached to the label ‘disabled,’ and it takes considerable identity work to process how identifying as disabled may change both how we see ourselves and how others will as well. This is part of a broader category of disability work which includes participating in various assessments in order to access reasonable adjustments and supports; managing those supports and coordinating your care; representing people with your condition when it becomes salient; and managing stigma and enacting disclosure, among other forms of labour required when you identify as chronically ill or disabled.

So I completely understand someone thinking ‘oh, fuck, I can’t face all that right now.’ That was me for a long time. In case it helps other people on the same journey, I want to say a bit about what disability means. 

Quick overview: I’ll briefly cover the basics – medical versus social models of disability – before I bring in notions of assets/deficits and needs. It may come as a surprise to some advocates that I favour a needs-based definition, but I’ll explain what this means and distinguish this from a deficit model. I introduce the notion of vulnerability as a key concern, while acknowledging the language is not ideal. Keep in mind these are all different ways of thinking (and talking) and none of them captures the full variety of needs, identities and experiences that exist among people with disability (PWD). As well, I’m writing in a relatively abstract and introductory mode, and there’s a risk this may disguise the way my perspective is partial, situated and in many ways privileged.

The medical model of disability is the one most of us have in our heads when we first come to disability — our own or that of someone close to us. Quite bluntly, this suggests there is something wrong with the person. To establish that, medicine establishes an idea of the ‘normal’ body and specifies standards that a ‘normal’ body can meet. If you can’t meet those standards, there are two possible responses: one is to train you to meet them (‘discipline’) and the other is to deem you abnormal (‘deviance’). If that sounds moralising, it really is; the ‘good’ disabled person never misses their physiotherapy, complies cheerfully with psychometric testing, etc. 

For example, for many years, children with autism were put through rigorous training in the conventions of non-autistic social interaction (‘ABA’). There was outrage when autistic people demanded respect for the value of autistic ways of thinking and being in the world from people they cheekily deemed ‘neurotypical.’ Adherents of the medical model saw this as celebrating abnormality, which is the hallmark of deviance. So the medical model of disability appears objective but it has little patience for human diversity and shades instantly into moralising.

The social model of disability has respect for diversity at its core. It acknowledges we are all born different in a society built around the idea that only some bodies are normal. The social model holds that disability only arises when society disables us. For example, a person who cannot walk is only disabled if they can’t access a wheelchair or mobility aids, and again if buildings don’t offer wheelchair access. These are just two examples of many ways in which society disables people who can get around just fine without walking. 

The social model of disability lies at the heart of the 2006 UN Convention on the Rights of Persons with Disability (CRPD) as well as Australia’s Disability Discrimination Act 1992 (Cth). The Act provides PWD with the right to request reasonable adjustments that would enable our participation in public life. It places the onus on the PWD to request the adjustment — hello, disability work. It also provides a lot of leeway for an educator or employer (for example) to refuse the request, for example because it’s too much work. And the onus then lies on the PWD to pursue resolution via the Australian Human Rights Commission. This puts legal dispute resolution at the heart of a social change model and, to be quite frank, it doesn’t fucking work. 

There are also social programs that offer supports that enable PWD to participate in public life, such as the Commonwealth Disability Employment Services program, or indeed the National Disability Insurance Scheme. The challenge here is that PWD are seen as needing charitably-minded public assistance to achieve the same ‘level of function’ as non-disabled people. This way of thinking is endemic in disability service provision and it is just as disempowering as the medical model. The scholar of community work John McKnight called this a deficit model — seeing people as lacking, rather than seeing their capabilities (an ‘asset’ model).

So here’s a conundrum: the social model of disability acknowledges that society needs to change in many ways to avoid disabling people; but when we provide services, adjustments and supports, we slip easily into ways of thinking that focus on what’s missing rather than how people are already capable. And it’s going to sound odd, but I think a more nuanced conception of needs can help, here. Need sounds awful – it sounds, well, needy. But the UK National Institute for Clinical Excellence (NICE) defines need as the capacity to benefit. You don’t have to be deficient, undisciplined or deviant to benefit from services, adjustments, supports and social change. We just have to take seriously the social democratic impulse to make life better than it was for previous generations, and to see participation in public life as essential for human dignity – an impulse and a vision we routinely deny in a neoliberal era.

So here’s my definition of disability:

Disability means you can benefit from adjustments, supports and social change that enable participation in public life and the attainment of personal goals.

But Daniel, doesn’t that mean we’re all disabled!?? Well, yeah. Haven’t you been paying attention? Go read Kate Manne on the invisible ‘shock collar’ worn by women and femme people, or Kimberlé Crenshaw on the interlocking systems of oppression that apply to disable the participation of Black women in public life. We are all disabled by society in different ways. People we currently understand as disabled may benefit from more specific and concrete kinds of supports and adjustments. But if we stop at that, we neglect the kind of social and cultural change that need to happen to overcome the discrimination that prevents us from public participation and achieving personal goals. 

For me, the value of this definition is the very queer kind of coalitionality it suggests we can find, with people who face other, or further, systemic forms of oppression. If we scratch the surface of anti-Black racism, we find a dense writhing mass of privileged beliefs about bodies and capabilities. Similarly, so much misogyny consists of constructing perfectly ordinary bodily experiences of people who menstruate, experience PCOS and endometriosis and dyspareunia and infertility and menopause, as deviant, undisciplined, deficient, and, yes, disabled. If we only attend to the capacity to benefit from specific and concrete supports and adjustments, we miss out on these connections with social justice.

A research hero of mine is the U de Montréal Professor Kate Frohlich, who developed (with Prof Louise Potvin) the ‘vulnerable populations framework’ (VPF, Frohlich & Potvin 2003). (Yes, okay, I’m going there.) I’ve just finished a few weeks of pro bono consulting on an engagement strategy for Covid-19 in an Australian state, and the whole writing group united hating the term ‘vulnerable,’ which triggers notions of deficiency and affective-relational needs for pity and charitable care.

But the VPF calls for public health to use social science to identify and address the processes that put some people at greater risk of risks. If need is the capacity to benefit, vulnerability is the capacity to be harmed. Meeting needs does not cancel out vulnerability; if anything, people with disability are most vulnerable to harm by their so-called carers and other close relationships, such as partners, family members, employers and research supervisors. As we develop schemes to promote public participation it is not optional to focus on reducing vulnerability as well. 

Drawing this all together, disability does not mean you are deficient, deviant or undisciplined. It means you can benefit from a service that would enable your participation in public life and the attainment of personal goals. It doesn’t turn you into a completely different kind of person: if anything, it means you have common purpose with many, many others fighting for social justice. And if you’re reading this and you don’t need much support or social change to participate in public life, I would ask you to join our fight for social change and to reduce vulnerability for PWD.


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