ben_hr

Health services, research, education, and inequalities

I read a useful post by Erin Kissane, where they asked people on Bluesky about what their negative experiences of Mastodon had been. I recommend you read it.

The main issues reported by people were that:

  • they got scolded, usually for failing to use content warnings
  • that they couldn't discover or easily search for people to follow
  • it's confusing to have multiple instances
  • it's too serious
  • people are being denied features like reposts in the name of safety, rather than being treated by adults.

Separate to Erin's work, I asked a similar question on Bluesky last week and received a much smaller, but consistent set of responses.

We should take these issues seriously. Mastodon should continue to aspire to be a safe place, in particular people who are marginalised on the basis of race, gender, sexuality, disability and poverty. Many of the complaints identified by Erin are, at least in part, reflective of deep concerns about the safety of users that have guided the development of the platform.

However we have to acknowledge that people have been driven off. Many of those who've gone would make Mastodon a richer, more diverse and more interesting place. I changed instances last week and in the process I unfollowed several hundred accounts that I used to interact with, but who haven't posted for at least six months. I miss a lot of these people and we shouldn't callously dismiss their departure.

Perhaps we need to chart a middle path between safety and approachability.

The way we make and keep Mastodon, and the fediverse more generally, safe is by not tolerating bad faith nonsense. Agonising over this is a weakness that villains exploit, and which has systematically ruined corporate social media (though their owners have done a good job of ruining that all on their own).

I confess that I get frustrated with complaints about content warnings (CWs). Nobody has a right to my eyeballs or my thoughts. Screaming into the void is one thing, but you don't have the right to pour your negative emotional state into my brain.

The caveat to this, and it's a critical one, is that many people of colour and trans people have said that they've been lectured to use content warnings when complaining about the people, structures and processes that oppress them (Often referred to as a home owners association – or HOA – mindset. HOAs are themselves a U.S. term, so its usefulness as shorthand is pretty limited).

We have to believe these people. Their experiences are real and their perspectives are legitimate. The need to listen to these people precisely the we can't allow this variation of bad-faith sealioning to proliferate, and for CW scolding to be weaponised.

Again this speaks to the need for a middle path between safety and approachability.

Similarly, maybe people on the fediverse should throttle back on “you need to” posts if someone doesn't use a CW or include alt-text on an image. I like those norms, they actually help inclusivity, but they're possibly at the expense of being welcoming and allowing people to make good-faith mistakes.

None of these issues are resolved by technical affordances. A repost button that allows to dunk on other people would be neither more welcoming nor safer.

The middle path between safety and approachability will be charted by how we act.

Ben Harris-Roxas Website | Publications | micro.blog

Stephen Markley has crafted a well-written, thousand-page sprawling multi-person narrative about the havoc we'll face over next two decades due to climate change.

We follow a range of characters including a larger-than-life climate activist, a small group devoted to resisting extractivism through violence, a curmudgeonly climate scientist, a poor Midwesterner with a history of addiction, a modeller with autism, a PR shill for carbon polluters, and perhaps a dozen more characters. As the book unfolds we witness increasing climate chaos and political mayhem, fascism, collective action, and gradual inadequate political change.

I liked this book – and I think it's important – but it's difficult, weighty reading. The vision of what the next two decades will hold seems accurate, chilling, and is frankly emotionally battering. Markley clearly understands climate science and has devoted considerable effort to imagining the unravelling of politics as climate disasters occur more frequently and vested interests dig in.

A major weakness of the book is that it focuses entirely on the perspective of Americans. While many of the horrifying impacts of the climate catastrophe described in the book affect the Global South most, we never follow the perspective of those who live beyond the U.S.' borders. This is perhaps understandable. Markley is writing from perspectives that he knows and understands, primarily for an American audience. Unfortunately in doing so he perpetuates the kind of American egocentrism and exceptionalist thinking that has driven much of the climate catastrophe that we face.

In writing this review I've realised that the book could perhaps be 200-300 pages shorter. Many characters' perspectives are not critical to the overall plot, and entire strands remain unresolved. Some of this meandering writing asists world-building, and the lack of resolution enhances the overall realism (do any of our lives have neat endings?).

There is a significant through-line about whether the urgency of the climate emergency requires violent direct action, or if social movements are the only way the necessary change can be achieved. Markley clearly thinks the latter, and I suspect he’s right. He explores the moral and interpersonal costs of this kind of political violence, which are some of the more interesting aspects of the book.

The Deluge is a powerful work of foresight-infused fiction, and if you’re not convinced of the urgency of climate action by the end you haven’t been reading properly. A stark future lies ahead, and sooner than we think. For these reasons I recommend it to others, but I’m reluctant to return to it myself.

Ben Harris-Roxas Website | Publications | micro.blog

Please forgive the extended quote from Wikipedia about The City and the Stars but the metaphor seems obvious, and timely:

As far as the people of Diaspar know, theirs is the only city remaining on the planet. The city of Diaspar is completely enclosed. Nobody has entered or left the city for as long as anybody can remember, and everybody in Diaspar has an instinctive insular conservatism. The story behind this fear of venturing outside the city tells of a race of ruthless invaders which beat humanity back from the stars to Earth, and then made a deal that humanity could live—if they never left the planet.

In Diaspar, the entire city is run by the Central Computer. Not only is the city repaired by machines, but the people themselves are created by the machines as well…

Once out of Diaspar, Alvin finds that one other human habitation remains on Earth. In contrast to technological Diaspar, Lys is a vast green oasis shielded by mountains from the worldwide desert.

Source

Ben Harris-Roxas Website | Publications | micro.blog

It comes instead when I am fighting not an open but a guerrilla war with my own life, during weeks of small household confusions, lost laundry, unhappy help, canceled appointments, on days when the telephone rings too much and I get no work done and the wind is coming up. On days like that my friend comes uninvited. (Joan Didion, 1979)

It's hard for me to remember a time before migraine. My first one was when I was thirteen, after a day of what I later came to recognise as prodrome and aura followed by disembodied but all-consuming pain.

Everyone's migraine is different, but that doesn't stop people from recommending treatments based on their own experiences. My migraine is known as “classic migraine” or migraine with aura. I see see points of colour, become sensitive to light, get confused, and start speaking gibberish. This is known as “word salad”, which doesn't really do justice to the sensation of one's mind being unable to select the right word, of being decoupled from the ability to use language.

Migraine is the second most common cause of disability, after back pain (Steiner et al., 2020). Its causes remain elusive, though it seems likely that it's a collection of neurological and neurovascular disorders. I think (hope?) it will always be somewhat unknowable. For a while my brain doesn't work and I'm incapacitated, and then it passes. It feels like something that can't be fully known.

I've become better at managing my migraine over the years, which is simply to say that I've become better at recognising the early signs. I've tried drugs, but the trade-offs stack up quickly. Weighing up side effects and the risk of migraine changes when it's been months or, once, years since my last migraine.

I had a bad one yesterday, my worst in quite a while. I'm still fuzzy and depleted.

People who experience tinnitus are often advised to undertake cognitive restructuring, to think of tinnitus as a friend who's always with them (Fuller et al., 2020). I don't think I'll ever be able to think of migraine as anything other than a tormentor.

If there is a good aspect of migraine it's in its passing. Nausea intensifies, and for me, suddenly, relief. The weight is removed. Light becomes less harsh. Colours change. Language returns.

Sources

Didion, J. (1979). The White Album. Simon & Schuster.

Fuller, T., Cima, R., Langguth, B., Mazurek, B., Vlaeyen, J. W., & Hoare, D. J. (2020). Cognitive behavioural therapy for tinnitus. Cochrane Database of Systematic Reviews, 2020(1). https://doi.org/10.1002/14651858.CD012614.pub2

Steiner, T. J., Stovner, L. J., Jensen, R., Uluduz, D., Katsarava, Z., on behalf of Lifting The Burden: the Global Campaign against Headache. (2020). Migraine remains second among the world’s causes of disability, and first among young women: findings from GBD2019. The Journal of Headache and Pain, 21(1), 137. https://doi.org/10.1186/s10194-020-01208-0

Ben Harris-Roxas Website | Publications | micro.blog