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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The app we should have had

Early this year the federal government announced it was buying in a contact tracing app that hadn’t worked in Singapore. The ‘CovidSafe’ app uses a wireless protocol to connect with nearby phones that are also running the app, to record an encrypted ID for each person the phone’s owner had contact with. The government refused to wait until Apple and Google had released an update that solved key problems, such as the way iOS shuts down apps that aren’t in use, particularly when the phone is locked. It claimed the app would allow us to exit lockdown and return to public life, so long as at least 60% of the population downloaded and installed it on their phones. However, total downloads stalled around 25-30% of the population, with the public perhaps remembering the privacy fiasco over the MyHealthRecord. The state governments that actually do the contact tracing reported it was of no use, and it was quietly dropped.

The app was meant to compensate for a human flaw — the difficulty of remembering where we’ve been and who we’ve met, going back up to fourteen days from exposure through to viraemia and finally immunity. Indeed, we don’t know who we’ve met on public transport, or in the queue for the supermarket. The design aims to take the human agent out of the picture altogether, instead relying on cool, hard technology to capture encounters with machinic precision. Yet the design and implementation embed and reflect the all-too-human vices of hubris and impatience, and what Evgeny Morozov called ‘solutionism.’ 

The problem that needs solving

It was also a gigantic missed opportunity to design an app that could have solved a long-lasting problem for citizens and governments alike. Imagine, instead of assuming humans are incapable, we designed something that could support and enhance our capability. We are deluged with information about the outbreak and limited in the time and effort we can devote to processing it. Reflect for one second on how you get your information about the outbreak: daily press conferences top the list, followed by media coverage of them and social media conversations about them. The situation is dynamic and right now, restrictions are changing almost daily. The amount of information that we need to process and respond to can be overwhelming, even for English speakers —and as far as I’m aware, no government translates them into other languages. 

I want to single out one issue: indications and requirements for testing. Each day, governments release a list of locations and times. If you were at the Apollo Restaurant in Potts Point on August 28th between 11AM and 9PM, please… go straight into quarantine? Seek testing? And then what — stay home until you get a negative result, or go about your day-to-day life? Misunderstandings about these requirements have become a matter of national scandal, fuelled by governments shifting blame for the outbreak onto ‘individuals doing the wrong thing.’ But their communication is haphazard. I just got a swab at a respiratory clinic and received no instruction to isolate until I got a result. And apart from the difficulty of remembering when you were there, this approach relies on people catching a momentary reference to the restaurant in media coverage. 

’If you were on the 8.12am service departing Central to Sydenham, please seek testing…’ Was I on that service? I caught a morning train at Museum, who knows what time it departed Central. Nah, probably not.

What the app should do instead

A few years back I was a bit startled, but basically pleased* to discover the Google Maps app had been tracking every trip I made, every day. (* This is pretty creepy but quite useful if you’re an ethnographer like me.)

Screen captures for my Sunday adventure from the Google Maps app

So just do that: remember where I’ve been, for me. In the second image, Google Maps is asking if I was at my usual morning café Warren & Holt.

If NSW Health announces there’s a case or cluster associated with that location, the app should notify me. If I take a long train journey and NSW Health later discovers one of the other passengers was a case, they can publish that information in a machine-readable format. The app checks that information for updates and if it matches my own data, it can notify me. In this vision, the app would not ‘phone home’ and notify anyone else. This is an approach to contact tracing that empowers the user, providing a precious resource — tailored information — and trusting them to act on it.

Edit 6 Aug — writing late at night, I sometimes forget to mention my main point. In this case: if I am traced as a contact or I get a positive test result, I can use the app to remember and relate details of my travels and encounters. I don’t need to send any data to the contact tracers other than by having a conversation with them, which allows the contact tracer themselves to use their own practice wisdom and personal intuition to ask questions an app could never answer.

This suggests a second function. I’m a reasonably educated guy, I can follow a complicated recipe, I’m literally a regulatory scholar, and I still find some of the advice on testing, isolation, and quarantine requirements confusing. The app should just tell me, here’s the nearest Covid-19 testing clinic. Here are their opening hours. Here’s a link to make an appointment. You should go home and stay home until you’ve had that test and got your result. If you need it, here’s a link to apply for a cash payment in case you have no income or paid leave. These details vary from one jurisdiction to another. The information should be supplied by governments in a format the app can parse and present to the user.

Finally, a third function. When regulations and services change, governments should be able to push out notifications to app users based on their location. This should be systematic but sparing, to avoid overwhelming app users. And — fucksake — governments should translate this information into languages other than English. If government is announcing new restrictions that can create criminal liability, it’s a matter of basic human rights that it translates the announcement into the languages in use in the whole community. It shouldn’t be left to communities of people trying to cope with the cops showing up and locking down their residential towers to make their own translations on the fly. The app should provide easy access to updates on the current situation in multiple languages, easily shareable via chat apps and social media. 

Who should do it?

Google, with input from Apple. The federal government dropped the ball. State and territory governments will take forever and develop their own separate apps with varying degrees of functionality. And none of these apps will have access to the location data Google already collects — the routes taken and the database of premises, transport routes, etc. Google should define the machine language and establish a secure API for accredited government users. It has existing expertise in interface design, user testing, security, hardware integration and regulatory compliance.

The key to this approach is that it coordinates the strengths of different actors: Google for apps and platforms, governments who determine regulations and provide information, and users, who almost always want to do the right thing if they are supported to do so. The last is a foundational principle for both adult education and social marketing — people see themselves as independent actors and respond best when you respect their agency and empower them to act.

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Covid-19 spreads like glitter

I’ve written a couple of pieces expressing evidence-based doubts about the value of general public mask mandates as an epidemic control strategy. In them, I acknowledge that we know masks work when Covid-19 is present, and encourage people to make and wear face coverings if that would make you feel safer. Let me add a third note: if government in your part of the world mandates wearing masks, I strongly encourage adherence. Epidemic control is not an opt-out endeavour.

My last piece expressed concern that debate over masks has been a distraction from the real drivers of the outbreak in Victoria — the networks of transmission among precarious workers and workplaces in aged care, child care, meatworks, fast food and freight. It’s very easy to focus on individual behaviours and whether people are doing the right thing, and much harder to think and talk about social structure and complex networks. Indeed, I have come to suspect Premier Dan keeps talking about individuals doing the wrong thing because it functions so well as a distraction from government failures. But I have been encouraged by the public conversation about precarity and the need for paid pandemic leave and other forms of job security. 

As I noted, mask advocates often claim that Covid-19 is airborne. The people who advocate masks are the same people who advocated ‘go hard, go fast’ on society-wide shutdowns. I am in two minds about how sincere they are, since there’s an important contradiction in their claims. If SARS-CoV-2 can be passed on via droplet nuclei, which are particles 1-5 microns in size that can hang in the air, then wearing a surgical mask or improvised face covering is not going to have any protective effect whatsoever. But there’s another effect in play, which I’ll call reverse reasoning. Let me give an example.

As a public health practitioner, I look carefully at the science on transmission routes, and then I consider what devices and practices could interrupt them. But members of the public don’t have the training or the time to engage in that kind of systematic consideration. I’m not an expert on the environment, for example. I encounter facts and recommendations in everyday life, and as a moderately curious person I try to work out the links between them. When my local council provides a recycling bin, with a detailed list of what can and can’t go inside it, I reason backwards from that to develop a mental model of recycling as an environmental practice. I assumed the contents of my recycling get sorted and returned to Australian packaging manufacturers. It was a big surprise to discover it gets shipped en masse to China and ends up as landfill.

Because the federal government made such a mess of explaining the rationale for its control recommendations early in the outbreak, many people have used reverse reasoning to fill in gaps in their understanding of Covid-19. The clearest example is the anxiety and rage people feel and express about momentary breaches of the recommendation to keep 1.5m physical separation in public. Reasoning backwards from this recommendation, they have concluded that Covid-19 must be easily transmitted via brief, casual contact in public places. We’ve known since early in the epidemic that this is not the case, but people don’t understand why not, leaving them open to competing explanations. The notion that Covid-19 is airborne is a perfect fit for that mental model.

In a crisis, a group of cranks can easily out-communicate a government. They have one issue and that affords them excellent message discipline, while the government has to communicate across a whole range of issues. They can just keep banging the drum, keeping their issue on the media agenda until the government gives in, precisely because it needs the airtime for other issues. A simple message will beat a messy, complex set of messages every time — just ask John Hewson or Bill Shorten. But we should ask why some people seem so determined to ‘beat’ government in the first place. The answers are not pretty. They include relevance deprivation syndrome, hunger for public profile, and feeling overlooked for a role in advising the government response. 

(But enough about me.)

The truth is always messier than a message. In the remainder of this piece, I want to explain the difference between airborne and droplet transmission. When you understand the basics, then you develop literacy that allows you to make sense of the more complex and uncertain aspects of the bigger picture. My hope is that enough people will read it and become the seeds of a diaspora, becoming informal educators in a culture of care around Covid-19. 

By contrast with formal education, which follows a plan of topics and activities, informal education has no curriculum. It happens spontaneously, when you spot a fleeting moment of opportunity in a conversation on equal terms, and you know just the right thing to say to tweak how someone understands the issue. It can’t be planned-for, but you can be prepared. And metaphor can be a powerful (albeit unpredictable) strategy for informal education.

So here’s the metaphor: Covid-19 spreads like glitter.

Airborne transmission is sometimes explained as involving droplets of respiratory secretions less than 5 microns in size, which can hang in the air and travel on air currents more than 1.5 metres from their source — even after the infected person has left the room. Droplet transmission is said to involve larger droplets that fall onto nearby surfaces, or get caught in our hands when we smother a sneeze and then transferred to another person when we shake hands or hug each other. This size distinction has been criticised. And, to be honest, this doesn’t seem enough to explain the incredible contagiousness of the condition, right? Surely it’s airborne.

Here’s how comedian Demetri Martin describes glitter:

Glitter is the herpes of craft supplies. 😘👌

People often think airborne transmission includes direct spatter from coughs and sneezes, but it doesn’t — that falls under droplet transmission. Glitter can fly through the air when propelled by a glitter cannon, and it can go everywhere after that, but it doesn’t hang in the air. Covid-19 is the same. 

And it’s still plenty transmissible. No matter how careful you are, if you use glitter in your craft project, you are going to spread it all over the place — by touch alone. If you air-kiss someone wearing glitter make-up, you are going to get it on you. If you get it on your hands, cuffs, phone cover, wallet, face mask, then you are going to transmit glitter to other people you meet and touch. And you’ll do all of those things unconsciously, even if you make a real effort to keep it contained and vacuum your craft space. Covid-19 is the same.

The finest glitter particles are 200 microns in size. That’s way bigger than the droplets that we create when we cough or sneeze (or snot all over ourselves). And yet they are highly, highly transferable.

We do not need airborne transmission to explain why Covid-19 is contagious.

Metaphors only go so far. One big difference is that glitter is forever — plastic glitter will take a thousand years to break down — whereas particles of SARS-CoV-2 will break apart with soap and water or hand sanitiser, and will be inactivated fairly quickly when deposited on surfaces. Another big difference is that glitter spread ceases when its point source is exhausted, whereas Covid-19 can keep infecting new hosts and creating new sources. But you can use this metaphor to understand and explain the considerable potential for spread via particle deposition and transfer.

This is why social distancing is so important. We know from studies of infection control in hospitals that medical staff require significant training and monitoring to use personal protective equipment correctly. To avoid catching glitter, your best strategy is to avoid dance parties indoor social gatherings, stay home as much as you can, and limit visits by people who could track it into your house.

Bonus for reading this far: enjoy this gorgeous track by NZ artist, Benee.

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Shut the schools down

But the reason is not what you think

For the past 3 weeks I’ve been spending time on twitter, monitoring the emerging response to the Covid-19 epidemic and, as we learn more, translating scientific ‘signals’ and policy responses into plain language.

In the past week, that role has become controversial.

I wrote in my last post about how our Prime Minister has politicised the reliability of communications. The government has taken to late night press conferences where it announces a laundry list of restrictions with no clearly apparent underlying principle. Journalists and health promotion people are united in agony at this spectacle.

The government’s ongoing failure to show its workings has important implications for adherence with recommendations. As I’ve argued, people don’t adhere to recommendations they don’t understand. This includes people (of all ages) going to cafés and pubs, for example, breaking recommendations of physical separation and avoiding mass gatherings.

But reactance against poorly-understood recommendations can go in the opposite direction as well — people being hyper conscientious, and people being utterly convinced that current recommendations are totally inadequate.

The public debate over how we are responding to Covid-19 is increasingly focused on demands for school closures. People are quite rightly observing that kids can get the virus and pass it on. Intuitively, that makes sense, right? Kids are little grot monsters and childcare is a swap meet for bugs of all kinds — every head cold going, flu, gastro, nits, hand and mouth, you name it.

All the same, AHPPC says there’s no evidence kids play a major role in epidemic transmission and it does not recommend school closures. That looks like a huge contradiction, and the failure to explain it has left a lot of people feeling severely mistrustful of the response.

Along with a small crew of co-authors on a recent Conversation piece, I’ve been active on twitter trying to explain what Prof Tony Blakely calls the ‘missing rationale’ for Australia’s responses to the Covid-19 epidemic.

Some of the most bizarre inconsistencies, like weddings being capped at five people but fitness boot-camps being allowed ten, are a little easier to understand if you know that Covid-19 is most easily passed on via close, sustained contact. Sitting side-by-side in pews for 90 minutes affords a better chance of viral transmission than doing star jumps 2 metres apart, outside.

(Others, like allowing barbers to remain open, are just bizarre and inconsistent.)

So this past week on twitter I’ve been making the point that school closures are not supported by evidence… and encountering increasingly caustic responses.

Such as Amy Thunig saying ‘you’re not an expert, you’re not an epidemiologist, you’re just a health communications guy.’ Somehow overlooking the fact our epidemic response is currently paralysed by our government’s inability to communicate effectively, and there’s an emerging political crisis about that.

The demand for school closure fits the pattern I described in my post on panic. Processing complex messages is much harder in high energy emotional states like alarm, distress, anger and panic. People in those states reject emotionally dissonant messages, e.g. if the tone isn’t suitably urgent, the speaker is seen as untrustworthy and the message is discounted.

School closure is simple, urgent, and decisive.

Here’s the counter-argument:

  • The WHO Joint China investigation found that in China, which had one hundred thousand cases and aggressive tracing of contacts, children were much more likely to be infected by their parents than the other way around.

  • Other countries like Singapore have controlled the outbreak without closing schools, albeit with much higher collective adherence to social distancing (physical separation) recommendations;

  • In Australia, data on cases and contact tracing shows very few infections in young people — at the time of writing, in New South Wales, only 27 out of 818 total cases were under 19 years.

  • Modelling studies show that school closures won’t help, and a study published today from the University of Sydney shows they may lead to more children becoming infected via contact with higher risk adults.

But it seems nobody’s buying that. It is contradicted by the widespread belief that there is exponential community transmission that is not being picked up in our data.

These two beliefs — infectious kids, unobserved transmission — have formed what sociologist Erving Goffman called a strong discourse. Normally you validate a model against empirical data. In a strong discourse, if the empirical data doesn’t fit the model, it’s the data that is rejected.

We see that happening when we attempt to persuade anti-vaccination advocates and climate denialists with evidence. They reject empirical findings as logically inconsistent with prior beliefs, even though nothing about the universe obeys the laws of logic.

It’s happening now with Covid-19 control, and that is an extremely concerning development. It has the potential to compromise the ability of governments to communicate not just the rationale for action, if they ever felt like doing that, but what we need people to do.

It can also poison the political conversation.

We’ve spent a week on an increasingly heated argument about school closures. They have driven a split through the ‘national cabinet’ of state and territory and the Commonwealth governments, with Vic and NSW going their own way. And while that has dominated the news, we haven’t been talking about the devastating effects of the epidemic and control measures on people’s livelihoods.

This week we saw the modern-day equivalent of bread lines snaking around the block, as people tried to get their identity validated so they could complete online claims for social security payments. We have a huge population of temporary residents who are not eligible for those payments and therefore have to keep working, putting them at increased risk of exposure to SARS-CoV-2.

Some twitter users have argued the government, in trying to minimise restrictions and their impact on employment, is putting dollars before lives. Others have demanded the government tell us all it knows.

But there’s no big secret there.

The government is sitting on epi modelling that predicts tens of thousands of deaths as hospitals are overwhelmed. That isn’t a secret; it’s the premise for flattening the curve, which many people now recognise, if not understand precisely. It is also sitting on economic modelling that predicts millions jobless and multiple years of recession. And it is trying to negotiate a way forward with both of those things happening simultaneously, knowing those predictions could spark widespread panic.

We need to be talking about that. We need to talk through what that means.

So let’s close the schools and move on with the public conversation.

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In a crisis, promote reliability (Part II)

This is Part II of a three-part series about effective communication during crises like our current pandemic of Covid-19. In Part I argued To avoid panic, promote efficacy. This post looks at how we can craft reliable communications during times of crisis. A third post will take a longer view, looking at anticipating inequity in how we respond to crises.

I’m calling this model TAPPER.



And always (3.) Anticipate Inequity.

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I was initially concerned this post might be a bit technical, relevant only to experts and insiders. But reliability has become a major political issue over the past week of the online conversation about Covid-19 and Australia’s response to the outbreak. People have been making and circulating ‘home-brew’ graphs, many from engineers and IT guys. Without any modelling skills at all, and without any information on Australia’s outbreak other than infection numbers, they visualise doubling time and little else.

Continue reading “In a crisis, promote reliability (Part II)”

To prevent panic, promote efficacy and reliability

The coronavirus pandemic is a rapidly evolving situation. Much remains unclear about how the virus behaves in the body and how it moves in the community.

Here is an excellent summary of what we know, and what we can all do.

Governments have been muddled in their messaging, and with a few exceptions, slow and indecisive in their responses to the outbreak.

In the absence of effective messaging, some commentators have taken to social media, writing blog posts, tweet threads, and even making memes to communicate information about the pandemic. Some are better than others, and some efforts are downright misleading or actively counter-productive. In some cases, we have people communicating outside their usual scope of practice, and beyond the limits of their experience and expertise.

A particular concern is that some of these DIY educators are communicating in a tone and style that encourages panic.

Continue reading “To prevent panic, promote efficacy and reliability”

Beyond cancellation: accountability and the Sydney queer community

I am everything that Katherine Wolfgramme loves to poke at on her social media: lefty, non-binary, and a lover of queer theory. Because I am those things, I am concerned about the recent letter campaign against her. The campaign calls on Katherine to stand down — or be stood down — from her positions as an Associate of the Mardi Gras Board and an Ambassador for the Gender Centre. (In these comments I am only writing about the open letter to Mardi Gras published in early December 2019.)

Although this piece is forthright about the problems of that campaign, I am writing it as a call to dialogue. There are material issues raised on both sides, and our communities can benefit from talking through them. But that conversation cannot happen in the situation as it presently stands. It both highlights the need and presents an opportunity to develop accountability processes that go beyond callouts and cancellation in response to conflict and misconduct.  

I’m going to delve briefly into the substance of the campaign, mainly to highlight the important issues that are in play, the problems with unchecked interpretation, as well as the high stakes involved. But I’m focusing mainly on the accountability of the process, and I’m calling for the Sydney queer community to develop effective and non-violent accountability processes. This is a matter of fair process, transparency, understanding our history and being aware of different kinds of power. This is not about defending Katherine — it’s about the consequences for our community if we don’t find a way to raise and resolve the issues, which affect us all. Demands for accountability must themselves be accountable.

Roiling waters in the ocean
Continue reading “Beyond cancellation: accountability and the Sydney queer community”

Strengthening the HIV-negative voice

In 2014 I was asked to contribute a piece from an HIV-negative perspective to a monograph on the positive voice, published in the lead-up to the International AIDS Conference in Melbourne. It was written for an audience of HIV sector insiders — practitioners, researchers and policy people — from a ‘pracademic’ perspective, drawing on my experience in practice and my training in cultural studies.

After much back and forth, the editor said it was ~problematic~ and he would only publish if I took significant chunks out, so I withdrew it. Recently the language of HIV neutrality has come back around, and there have been resurgent concerns about serodivision, so the issues raised in this piece remain unfortunately relevant. So here it is. As always, I welcome your thoughts and feedback in the comments.

A personal journey

So far I’m still HIV-negative, ten years since I began working in HIV. It has been on my radar for longer, ever since one of my first partners disclosed he was living with HIV, after we broke up. I didn’t panic then, but the first time someone disclosed their status to me before a casual encounter, I did: the oncoming rush of emotion meant I couldn’t go ahead with sex, and I projected my sense of failure onto him.

My shame afterwards was a wake-up call. I still feel strong emotions when someone discloses to me — not fear of infection, but feeling their vulnerability in that moment. But like a lot of negative men, in my twenties and thirties I undertook a slow and deliberate process of learning how to manage those emotions and respond to disclosure in a skilled way that did not derail the sexual or romantic potential of the encounter.

Continue reading “Strengthening the HIV-negative voice”

What we don’t talk about when we talk about PrEP

Guest post by Steve Spencer, from his presentation on a consumer perspective on PrEP to the 2019 Australasian HIV Conference in Perth (edited for publication by Daniel Reeders)

Conversations changed my life as a PrEP user, and that’s why I’m really excited to bring the consumer perspective to the conversation about ending HIV. Before coming, I asked my social media community for insights. What do they want to tell you? What do they want to hear from you? And what do they demand as PrEP users? I asked them what is good and what is bad, what their hopes are and what their fears are. The lived experience of PrEP is deeply personal and more complex than these binaries, so this is just a snapshot.

We all know the frequently asked questions, we know the topics du jour surrounding PrEP. So I will start by drawing attention to the less discussed topics that, as we approach majority coverage of PrEP in ‘at-risk’ groups, are becoming issues the HIV sector must address.

I am now a person living with HIV, and I can’t help but speak from a dual perspective. As a sector — as a community, in fact — we understood that some people would get HIV when condoms were the only prevention tool we could offer guys who wanted, as they say, to fuck raw. But we are so far away from accepting that PrEP users can get HIV too.

The ‘age of PrEP’ as the ‘end of HIV’, as some see it, presents myriad challenges for those who seroconvert — in rare cases where medication has failed, or more commonly, cases where education hasn’t got through or the regimen hasn’t been doable. Whatever the reason, PrEP users who seroconvert are facing old stigma with a whole new intensity — and this is unacceptable.

PrEP has uncovered the hidden demographics of new diagnoses, and they tell us we won’t be ending HIV any time soon. So any discussion about PrEP and its enormous, mind-blowing success, has to be tempered with the reality that many people aren’t benefiting from it yet, many people will get HIV in the future, and people with HIV are still living with stigma and still need support and respect.

So, what’s the good news about PrEP?

Other than the excellent news it works exceptionally well at preventing HIV, PrEP users are excited that PrEP use is growing and becoming more dynamic. It’s more common to find partners who share the lived experience of being a PrEP user. I remember how difficult it was being an early adopter — all the fears that I had to constantly assuage in others.

Also, static and conservative clinical guidelines are finally relaxing. Use of on-demand, or event-based PrEP is growing and is slowly being endorsed by clinicians as an option. Importantly, our diverse communities with diverse behaviours and diverse prevention needs are beginning to find and share the diversity in PrEP use. They have options for using PrEP that adapt to the uniqueness of their lives. This is truly groundbreaking. We talk about the HIV preventative ‘toolbox’, well, we’re discovering that PrEP is the cordless screwdriver with many different heads.

In terms of access, it’s getting easier and easier to access PrEP. Whether it is through the PBS or online, there are many price options and access options. I would particularly like to draw attention to the innovative 3-for-1 schemes available at a few Melbourne pharmacies, where you get 3 months (a standard script) worth of drug for the price of one month, thanks to a charitable organisation. And we demand greater roll-out of these sorts of schemes – with the listing of PrEP on the PBS, access through many pharmacies became less affordable than buying it online, and making PrEP cheaper should be a goal for pharmacies.

What’s bad about PrEP?

We’re not getting women. We’re missing heterosexual men and bisexual men who aren’t community attached. We’re swinging for but missing trans people. We’re not reaching out to Indigenous communities. We’re missing culturally and linguistically diverse people and overseas-born men who have sex with men. We’re swinging for but still we are missing international students. Clinicians and researchers and health workers see it in the statistics, and we all see it in the changing demographics of new diagnoses. PrEP-users acknowledge this gap and they are also the perpetrators of the stigma against non-users. A gap is being created between PrEP users and non-users, and over time division will be felt in our community.

While it can be argued that PrEP is shrinking the serodivide between negative and positive people, there is undoubtedly miseducation, misinformation, and plain old stigma and discrimination against people living with HIV by PrEP users. Persistent stigma against people living with HIV during this period of significant growth in PrEP use is a scourge – when you see ‘PrEP 4 PrEP’ written on a Grindr profile, this isn’t a sexual preference, it’s a failure of education. It harms the entire community, and those scared men are being let down, because they are not getting support to embrace the science and the life-giving U=U message that should be welded to the PrEP message.

At a practical level, the discussion about cost needs to continue. The medication itself can be relatively cheap (depending on your access options), but doctors and pathology are not cheap. If we are to achieve a greater number of users to help bring down HIV diagnoses, we need to make it as easy as possible to access the entire PrEP combination to ensure positive health outcomes.

As a final point about what we can improve about PrEP, we continue to see doctors misunderstanding PrEP and the unique needs of their patients. When a doctor doesn’t support you to use PrEP, you’re disempowered to protect yourself. They tell you: ‘I’m sorry, we do not promote that behaviour, you are on your own.’ And that’s a problem. Would-be PrEP users experience friction and discrimination from clinicians, and this is a particular problem for people outside of community-attached gay and other MSM — the groups I mentioned earlier. We battled that resistance to daily PrEP and won, now we have that same fight all over again with event-based PrEP. We’re even seeing people report feeling judged when they cease PrEP use.

Prevention decisions are personal choices. They should be informed, but not judged. We should not underestimate the ability of individuals to access cutting-edge information and apply it to their own needs in real time — and to share it, thoughtfully, with their mates. These people need to be supported to achieve the best outcomes. I have experienced this personally, when you’ve done the research, you know your options, and your doctor says you’ve done the wrong thing. I can tell you it leaves you feeling confused, it leaves you feeling awful.

What are the fears of PrEP users?

PrEP users are still afraid of HIV. It is really sad to say. They are still afraid of people living with HIV. It only takes a glance at any online PrEP forum to see the level of fear that persists amongst PrEP users, even among some long-term users. Intergenerational trauma and intra-community division will take a long time to dismantle – a blue pill doesn’t make it go away. 

As PrEP use becomes more mainstream, people starting PrEP often don’t fully understand or engage with the science. Where is our education going wrong, especially around other STIs, when PrEP users are still oppressed by anxiety and fear (and projecting these fears onto others)? Many users still understand HIV as an abstract concept. Speaking personally, what I learnt about HIV after my diagnosis shook up my preconceived notions about what it’s like to live with HIV. More importantly, it taught me how I can be a better PrEP advocate; it has given me a keen eye for the fault-lines in our approach to PrEP and its place within HIV prevention. When we are operating in competition or in silos, we are not working together and it is prohibitive to our goals. 

What are the hopes of PrEP users?

Hope is my favourite topic right now, because there are so many areas of current cutting edge PrEP research that offer reasons for hope. PrEP users want to see injectables, they want to see implants, they want to see a vaccination. These are currently visible on the horizon and they are the future that PrEP users demand soon. We knew, years ago, that taking a pill every single day to keep you safe from HIV would become a thing of the past. Medical innovation will improve on PrEP as we know it, make HIV prevention more simple, more available, and more suited to each individual. Just like the first participants in the early PrEP studies, HIV negative want to do what it takes to make these advances a reality.

PrEP users, like the rest of us, hope for the end of HIV. This can only be achieved with the full endorsement of U=U — the combination of PrEP + U=U is a formidable force to end HIV. We need to listen to HIV positive voices on how this can be achieved. As a young PrEP activist in Melbourne five years ago, I learnt everything I know from people living with HIV. They were formative in how we adapted the PLHIV playbook to the needs of PrEP users and prospective users. This legacy must continue.

We have done an amazing job in Australia and we are world leaders in responding to HIV, from everyone working within the sector, to the grassroots movements and organisations that changed the culture around PrEP and made space for the science to work, to the individual PrEP users that took that first leap of faith. I know faith has very little to do with science, but now the science is in, PrEP users have faith in PrEP, and they have faith in our abilities as a sector, so it’s time to build on our success. We let everyone down when we don’t educate properly on PrEP.