Granite and Sunlight

I spoke with STV News today about the Assisted Dying Bill in Holyrood. Obviously, I had a lot more to say than they could fit in, so let me say it here.

(I have limited replies because, of everything I’m involved in, this is the topic I hate the most. I love so many people on both sides and it absolutely shatters me. I am laying out my position, not debating in public with other people who are suffering)

First, I used to be on the other side of this. I know what’s at stake and why people want it. But I have experiences, both my own and those of disabled people I’ve worked with, loved or supported, which most people don’t. I know the systems we’re all relying on to ‘safeguard’ vulnerable people. I know them intimately. I know they cannot.

The medical, legal and social systems which are meant to safeguard people from abuse do not work.

At the beginning of the pandemic, we warned about the risk to the lives of disabled in care and were told we were hysterical. Only months later the stories about DNRs applied to disabled people without knowledge or consent – something that ‘can’t’ happen – came out. Nobody has ever been held accountable.

We know from bitter experience how many doctors devalue the lives of people with severe disabilities or major long term conditions. We know how many of them consider death a ‘kindness’ for people living lives they don’t understand. We have heard how they speak about us.

When we talk about the risk of coercion, there are three major threads:

1 – disabled people, especially disabled women, are significantly more likely to be in abusive relationships, often with their primary carer. As support and care are cut and shelter services remain inaccessible, escape becomes harder. We are supposed to try to save people in these situations.

2 – linked to this, abusive partners tired of the work of care are given an out ‘everyone’ would understand.

3 – but the real coercion we’re talking about is society-wide and can’t be easily accounted for in vetting. As care and funds and access to treatment are cut, the fallout doesn’t just affect us. We watch our loved ones give up careers to provide care, watch our lives shrink as the cost of disability takes more and more from our families, see the weight of worry and work.

It’s easy to say ‘you’re not a burden’ but we’ve built a world where that’s hard to believe.

People in full control of their capacities, with no-one standing over their shoulder (in fact, often with people begging them to see they want their presence more than an imagined ‘easier life’), will ask for this because they want their families to be ok. In Oregon, now more than half of assisted deaths cite ‘being a burden’ as a core reason, doubled over the last ten years.

People familiar with suicidality may recognise this feeling. Normally, we understand the most dangerous thing you can do is legitimise a person’s feeling that their reason for suicide is sound. Except when you’re disabled. Then everyone goes out of their way to understand. I can’t tell you how many people have told me they’d have killed themselves in my situation.

And yes, I understand this bill is restricted to people with a six month terminal diagnosis. So were many other places’ laws. Once it’s implemented, the push to expand eligibility is relentless and in most places successful. You cannot bind future parliaments, so it can’t be written in stone. We’ve seen it happen over and again.

I wish we lived in a society where we could do this knowing people had received the support and treatment they needed so the choice would only be made when necessary.

Instead we live in this one, where access to the basics of housing, food and treatment are increasingly precarious and a constant battle with the same systems people are entrusting this Bill’s safeguarding to.

It isn’t safe.

You won’t believe me, but I wrote the below this morning, before hearing the news. I thought it was probably too mawkish to publish so kept it as a draft. Then I heard Chris Rea had died, and it felt too weird. But if Christmas isn’t a time for mawkish and weird, when is. So here is how Chris Rea reshaped my kid brain.

Driving back from a medical appointment this morning, I heard Driving Home For Christmas on the radio. My favourite line – ‘get my feet on Holy ground’ – feels different this year. It made me think about how that line shaped me as a kid.

Christmas has always been something special for me. Mum created something beautiful, where even when we were floored by grief we could also have moments of joy, love, laughter. In 44 years I have only spent three Christmases away from home, and even then we’d go in the days following. Driving home to Aboyne for Christmas has been a pilgrimage.

But when I was a kid, that line changed what I saw as sacred. I loved midnight mass, and the ceremony and ritual of it all, but it made me understand that a home filled with that kind of love as everyone gathers was a holy thing. Not just fun, not just good, but set apart and worthy of honouring.

A lot of things set me on the path to being someone who sees the whole world as sacred, but I wonder how much that shift of understanding nudged me.

And I ache this year, as I understand I will never make that drive again, and as much as I love the house and all its memories, it was always her that made it holy ground.

I hope I will find new rituals in the future, new pilgramages to honour this time of year. I wish I could turn my home into that place for others. This year, we’ll be seeing family in different places and in time that may become its own tradition.

But I’ll always be grateful for the many years our mother made Christmas. Sometimes the house was packed, sometimes it was just a few of us. Sometimes we wept together because of new absences, sometimes we argued, sometimes we just laughed and fought over the last bit of stuffing. Around us she displayed Christmas cards from all over the world, from the vast number of friends she’d collected. Upstairs, the tree held little wooden decorations from her childhood, and ones she’d picked up on her travels. It was, however, mostly laden with the decorations we made as kids, at playgroup and school and sat downstairs at the table. Some are now 50 years old and still have glitter clinging to bits of egg carton. In the dark evenings, with just tree lights glowing, reflected in the windows, you could hear her pottering in the kitchen, someone else last-minute wrapping presents, the garage door banging open as others arrive.

Sacred.

Holy ground.

EMERGENCY CALL OUT: DISABLED PEOPLE HAVE TEN DAYS BEFORE THE DISABILITY CUTS ARE VOTED ON IN PARLIAMENT

WE NEED A REBELLION

I am begging, even if you think there’s no point, even if you have tried before, please contact your MP and ask them to vote against the cuts on the 1st July.

If they are Labour, this is vital:

If they are already against the cuts, please write to support them. They will be under enomous pressure from the party and need to know we are grateful, and will defend them against attacks.

If they’re pro-cuts, tell them they have betrayed everything Labour was meant to represent, and their ideological crusade is just eugenics. Tell them these are cuts even the Tories didn’t dare make and the myth that there’s no money in one of the richest countries on earth doesn’t fly anymore.

And if they’re swithering or quiet, these are the most important – tell them they have a chance to be heroes of the Labour movement. Tell them rebellion is a duty and they will be supported and lauded. Tell them this is their chance to take a real stand for the people and yes, Rayner is threatening reprisals but this is the essence of labour solidarity – we stand together as a collective because they can’t fire everyone. Don’t be the weak link. And then maybe tell them if they do vote for the cuts, you’ll spend what’s left of your life fighting to get them deselected.

If they are Tories, make the obvious economic case that the loss of people from the workforce to provide care for people who no longer qualify for support, the cost of increased emergency and exacerbated conditions, etc, will cost far more than it could save.

Lib Dems and the SNP should be on board anyway, but write with support and fear. They still need to hear it.

Reform… Well. They’ll likely vote against as part of their current manipulative ‘no really we’re friends to disabled people, please ignore our plans to privatise health and social care and do far worse cuts than this to the support you rely on oh and you’ll have no legal human rights to challenge any of it’. But probably worth telling them making Labour look bad is possible.

If you can get a meeting with your MP, zoom or in person, even better. But please write. You can use the wonderful site Write To Them (just search those words)

Look at Disability Rights UK and DPAC (Disabled People Against Cuts) for information and statistics you can use I’ll link some below.

Our lives depend on this. Please help us.

Open Letter to Stephen Timms, the Minister of State for Social Security and Disability, on the consultation failures for these cuts

Labour rush to get first vote on PIP and UC cuts over

Labour MP resigns as government whip in protest at benefit cuts

70,000 more people to lose disability benefits under Labour’s cuts than originally expected

Meet the rebel Labour MPs voting against disability benefit cuts: ‘I don’t want to be part of it’

Mapped: The worst-hit areas for PIP cuts as more than 1.3m could lose support under Labour’s plans

I’m really struggling at the moment with anger. I’m very much of the opinion that rage can be healthy when it’s used to fuel change, but this anger is a stone in my heart. It’s a combination of things which come down to ‘I have nowhere to put this’. I keep crying because it’s overwhelming.The three things which have driven it: spending seven hours at a protest/meeting on Wednesday, comforting people when the vote went the way it was always going to go, after they repeatedly said they acknowledged the impact assessments. Telling them it was just important we were there. WHY?Finding out that months-long stroke rehab, involving coming to terms with potentially losing massively important things, never returning home, etc, does not include any counselling. Realising that 10yrs ago I’d have fired up a campaign because it’s obviously necessary, but now there’s zero point.Because, 3: at the Wednesday meeting, where they were cutting essential disability services to make up a 3yr budget shortfall, my colleague asked ‘so what’s the plan for bringing them back once this is paid off?’ She just stared and said ‘that’s… That’s not going to happen.’ I’d asked repeatedly about how it was nice that people currently getting help wouldn’t be left without provision but what about all the people coming up who’d need services no longer there. Same answer.I know there’s no point wasting energy fighting for counselling for people in stroke rehab even though we could easily make an economic case for it, even though leaving people who are mostly immobile all day with nothing to do but think is wildly irresponsible if you’re not helping them adjust.Because things will only get worse. They can’t get better. Services will only be taken away, not added.Even if you accept the deeply flawed, disproven premise of austerity, it was only ever supposed to be temporary. Short-term pain to rebalance, not a permanent state of continued degradation.Of course we knew austerity was a smokescreen for privatising everything, but it seems everyone has just accepted this is how things are now. Things will only get worse. There can be no improvement. Fighting for even the most obvious good is pointless.And I’m so angry. I’m so angry.I’m angry that people I love cannot get the care they need because I’m not rich enough. I’m furious there’s NOTHING I CAN DO. Not even just to help them, but to make sure it doesn’t happen to anyone else.I’m so angry these parents poured out their hearts, explaining exactly how their children would be hurt, and everyone nodded sympathetically and voted for it anyway.I’m furious they couldn’t vote any other way, because everything the IJB does is important and their budget isn’t set by them.I’m furious that the people who set the budget say there’s nothing they can do. Because this is just how things are. Services which help people will be cut and will never come back. All the progress we made on independent living will be wiped out.I don’t know why, after all these years, this is what has tipped me over the edge. I keep fighting because I have to, but this anger has crystallised into something I can’t use. It isn’t fuelling me. It feels like it’s killing me. It feels bigger than my body can hold.

CN: DWP

I need everyone in the UK who isn’t directly affected by these potential cuts to read this.

[Everyone who IS affected – please do not read further. I have spent the last week trying to work out how to say this in a way which gets across the severity to people who don’t know while keeping people who are at risk safe. I’ll be sharing plenty of information about the practicalities and the fight through my accounts at Bluesky and Facebook, please don’t read this. You can click on this link and use the template to send a letter to your MP (remember to amend details for your area).]

Sunday was my birthday, and I spent it in a planning meeting with DPAC (Disabled People Against Cuts) about how to fight Labour’s Green Paper on cuts to disability benefits (because of course I did). I have spent the time since mostly curled in a small ball under my duvet, trying to get my heart rate down.

I am shattered. Shattered. I spent the run-up to the election warning people about who this version of Labour really are, who they showed themselves to be before the austerity years by introducing conditionality, hiring atos, introducing sanctions. And still I did not expect it to be this bad.

To give a very brief summary: the government is proposing ‘incentivising’ work for disabled people by increasing payments for the people in the ‘looking for work’ group, and DECREASING payments to the people in the group THEIR OWN SYSTEM has deemed ‘not fit for work’. Getting put in that group is extremely difficult, and many tens of thousands of people who should be in it are not because of the cruelty and arbitrary decision-making at the DWP. The government wants them to decide to move to the working group because it’s the only way they’ll get enough money to survive, but it will increase the burden on the people who can least afford it immensely. The Green Paper also wants to stop increasing PIP in line with inflation, just at the point where energy and food bills are skyrocketing. PIP isn’t compensation for being disabled – it’s to meet SOME of the extra costs disability brings. Despite all the talk about getting disabled people into work, they have also proposed separately cutting funding to Access To Work schemes. The problem with disabled people getting into work isn’t us. It’s employers refusing to hire disabled people, refusing to accommodate disabled people, refusing to adapt to different kinds of jobs and schedules and priorities to allow disabled people to work. We are not the sticking point. Torturing the people who cannot work to ‘incentivise’ work that doesn’t exist is a step even the Tories didn’t take.

Their proposed cuts are going to kill people. There is no doubt about that. They are going to do immense health damage to many, many more, and plunge tens of thousands of people into extreme poverty. And make no mistake – this is ideological, not economic. The amount of money they’ll ‘save’ by cutting funds to the sickest people in the country will pale in comparison next to how much it will cost in legal fees, tribunals, inquiries and, most importantly, the massive health and social care bill increases as people are forced into situations which will cause their health to deteriorate to the point where they need to leave work, require more treatments and their family needs to leave work to care for them.

This is a choice the Labour Party government is making. They could implement any one of the many, many taxes on people who have more money than they could ever spend, on people who wouldn’t even notice the money missing. They could take steps to raise funds on the city traders who have destroyed the world. They could do any number of things other than this. But ‘making hard decisions’ never, ever means ‘risk upsetting the rich people’. It only ever means ‘kill disabled and poor people because they don’t have enough money to buy us off’.

They choose disabled people as targets for a couple of reasons. First, because they think nobody cares. It’s a fair assumption – we have been fighting this fight for decades now and the general public has not shown up. You do not march for us. You do not protest for us. We’ve just come out of five years of proof that people see saving disabled people’s lives as not really worth a minor inconvenience. We need that to change. If you care about any disabled person, if you recognise that you may become one of us at any moment, if you want there to be a safety net for you or anyone you love, we need you to stand with us now. Because second, they think we won’t fight back. Because so many of us can’t get in the streets, they think we’re helpless. And we’re not. We are going to fight because we are facing an existential threat. Not all of us will survive this. We have a long list of the people we’ve already lost. But we’re going to survive because we won’t die quietly to save them a few quid. We won’t let this happen without making sure they know the faces and names of the people they have killed.

We are preparing to counter the Green Paper. It is not policy yet. We still have a chance to stop it. Help us. Please. Follow DPAC (Disabled People Against Cuts) on Facebook or through their website, please use this letter template to write to your MP whether or not you think they’ll be sympathetic (remember to amend the details in it to your own area). Please don’t leave us to die again.

I write a lot about how I see hope. I have poems about how hope doesn’t feel positive to me – I know its effect is positive, but it’s not a nice feeling. It hurts. In movies, when hope sparks, the person usually smiles. That’s not been my experience. I write about how hope is a choice, and a practice. It’s something you do. It is getting up when everything seems bleak and still trying to change things. It is choosing to not be overwhelmed by all the despair, or at least not permanently. It is doing the work anyway. Except. I know what that other hope feels like. For a few weeks, back in 2014, I felt hope that didn’t weigh me down. Hope that didn’t feel futile. It was so unexpected, and so beautiful, and so singular.

I am from a cursed generation. Not to say we had it worse than anyone else – we all suffered in our own ways (and I’m using ‘generation’ here with the caveat that these are just useful collection labels for a widely shared experience of a time and place, not universal or destiny or remotely reliable sociology). But I think my small cohort of western very elder millennials had a particular experience with hope. We were born into the Cold War, the world of Thatcher and Reagan, the wars on the unions and the rise of hypercapitalism. But around the time we began to be aware of the world around us, we watched Eastern Bloc countries gain independence, the Berlin Wall falling, the Good Friday Agreement, the dawn of the internet and talking to people all over the world, the landslide Labour victory. Terrible things were still happening, but it felt like large global shifts of power towards something good were not only possible, but inevitable. We were too young to understand it all, but we came of age believing the world was sorting itself out, that we’d decided people mattered.

And off we went into adulthood, just in time for George Bush to take Florida, to realise what had entered Downing Street with Tony Blair, to see the towers fall and all the liberal heroes cheerleading the crushing of civil rights, to march in our millions against a war and have it make absolutely no dent. And as we grieved, we had Boomers telling us we were weak and Gen X telling us we were stupid to have ever thought it would be different.

So hope is something hard to quantify for me. I have the impulse to hope. It is there, and I hate it, because I usually find out I still have hope at the moment it dies. Just when I thought there wasn’t any hope left to lose, I’d find a store to break my own heart with. I refuse to give up on the world I saw as a teenager, though, so I approach hope as a choice. I don’t believe it will make a difference but I have to work as if it will, because the alternative is complicity.

Except for those couple of weeks in September.

I’d been campaigning for a year, not letting myself believe it could happen. I campaigned for the world I knew we could build if we just got the chance. For the people around me in the movement, made up of every ethnic group and faith and demographic and background. I saw the commitment to a country where we put people ahead of corporations, class and corruption. Where we chose community over fear and isolation. I saw the people working for it and sure, I didn’t get on with them all but we all wanted something better than this.

I knew it would be hard. I knew it wouldn’t be sunshine and roses – new countries have growing pains and the British State would do everything they could to sabotage us in case we showed the other home nations that necrocapitalism was not inevitable and there was another way to structure an economy. But through all of it, I also had faith we’d choose to make sure people were taken care of, even when things were hard.

In those last couple of weeks, it began to feel real. It began to feel in reach. The conversations changed and people began to listen. The state panicked, of course, but it still felt like it did when I was a kid – when I saw the world shifting and knew something better really was possible. Hope, it turns out, doesn’t always hurt in the moment. It can be beautiful. It can make you feel connected to the people around you, to the world. It was transcendent. I’ve never felt anything like those days and nights. Ten years later, I can still taste it. I can still conjure that light in my chest, feeling like it was spilling out of all of us like sunshine. I could hear that better world breathing. 

The years since have been so much worse than we predicted. We were called scaremongers for what turned out to be fairly anodyne assumptions about what the cost of a No vote would be. Despite their campaign, we always knew a No vote was not neutral. We have lost so much and so many in the decade since the results came in. We’ve seen other hopes rise and be crushed by the same forces.

But we’ve also seen how effective a lack of hope is as a recruiting tool for fascism. How easily our friends fell for lies which gave them an enemy to fight. How, left without the capacity to build something good, people will tear things apart. How easily cruelty seeps in where blanket cynicism has taken hold. A lack of hope, real hope, is dangerous.

So I still hope. It’s my usual kind of hope. The gritted teeth instead of the smile. It’s the hope that means we still keep fighting even when we can’t see how it could possibly work out. Even when it feels so far away. Ten years gone and I know when independence comes it won’t be that joy-filled new dawn we could have had. They won’t underestimate us again. But I hope it’ll come. I still hope. I still hope.

This is about the War Poets, the use of poetry, and the purpose of memorials like the Cenotaph and days like Armistice Day.

Like many, I was taught the War Poets at school. It was the first time I really understood what poetry could do. I always loved it, but reading Dulce Et Decorum Est was the first time I felt it. It has such visceral language, such horrifying scenes, but the last lines contain a multitude of emotions.

“My friend, you would not tell with such high zest
To children ardent for some desperate glory,
The old Lie: Dulce et decorum est
Pro patria mori.”

Wilfred Owen

Spitting rage, resignation, grief, disillusionment. It changed the shape of war in my young mind – from an abstract Bad Thing to a concrete, awful reality. I was, of course, lucky enough to not learn that firsthand as a child – far too many kids don’t need poetry to teach them. But poetry gives more than images – it is also about meaning. This poem is about more than a single scene of horror – it’s about the whole structure of war, power, establishments, tradition.

From there, we learned Suicide In The Trenches. The last stanza of this one is seared into my mind.

“You smug-faced crowds with kindling eye
Who cheer when soldier lads march by,
Sneak home and pray you’ll never know
The hell where youth and laughter go.”

Siegfried Sassoon

Again, the spitting rage, the scorn, the disillusionment and the anger at everyone who props up the glorification of war. That is the common thread in the War Poets canon. We grew up being taught that the people who make the decisions are not the ones who die in battlefields, are not the ones who watch their friends die, are not the ones who come home screaming. Among others, Wilfred Owen wrote about how the men they were killing were the same as them:

“Whatever hope is yours,
Was my life also”

Wilfred Owen

Just over a decade before, Thomas Hardy wrote,

“Had he and I but met
By some old ancient inn,
We should have sat us down to wet
Right many a nipperkin!

But ranged as infantry,
And staring face to face,
I shot at him as he at me,
And killed him in his place.”

Thomas Hardy

They were clear that this carnage isn’t glorious or honourable and it certainly isn’t aspirational.

I’ve had a number of conversations about this over the last month, for obvious reasons. When I was young, World War 1 and 2 vets were still alive, still telling their stories. Remembrance Day was a sombre affair, and these poems of anger were read. Something shifted around the end of the century. It might have been 9/11 and the need for triumphalist propaganda. Or the vets were few enough that families mostly just talked about grandpa the war hero, rather than dealing with the day to day of a person who came back hollow, or drank to forget, or woke up screaming into their 80s, or refused to ever talk about what they saw. They became abstract again. And, sadly, Siegfried Sassoon foresaw that – foresaw exactly what is happening in London today:

“Make them forget, O Lord, what this Memorial
Means; their discredited ideas revive;”

Siegfried Sassoon

The War Poets left us a whole canon of ways to understand why war is not glorious, not to be celebrated. They told us how useless the carnage is when imperial powers decide to redraw their lines. We grew up with these poems, and now, as Adam Smith (not that one) said:

“When you’re a child, they’ll teach you war poetry. When you’re an adult, they’ll arrest you for understanding it”. They don’t want us understanding the war poets these days. Some in power are even trying to recast modern military people writing poetry as ‘woke’. Can’t have people putting their experiences into a wider context. Can’t have people understanding what all this really costs.

So today, the 11th of November, I’m going to honour the people who were there and who sent messages down through generations begging us not to allow any of it to happen again. Which means refusing any smug-faced crowds and old liars who think protests against war are somehow inappropriate on this day, at the Cenotaph. Sassoon’s Prince Of Darkness would be loving this.

Once again: the ‘death of twitter’ jokes are fun but the disability community is filled with dread. Twitter fills a specific niche for so many of us which makes it the place we organise, support each other, develop theory and practice, and have social lives.

No other solution fits the same need, and the community becoming atomised will be devastating for people’s health, both mental and physical, since mutual aid is such a big part of people’s presence there. It’s the main source of conversation and interaction for many people.

The problem is we each belong to lots of different groups and circles, which overlap a lot but aren’t all the same. We don’t have the energy to check 17 different sites and three different apps, and the cross-pollination which makes us strong doesn’t work like that. For many disabled people the situation is even more devastating because most of the alternatives trying to give a similar experience have made it clear that accessibility is a future concern, not a today one. They’ll get to it, maybe, once the important people are dealt with. We know how that tends to go. We know how long it took and how much work was done to convince multi-billion dollar social media platforms to add basic accessibility features. Forget asking startups. The VC money they get isn’t for the likes of us.

So our community will dissipate. It will break apart into much smaller, much less powerful blocs. It’s hard to imagine that isn’t seen as a plus by the people doing all this. There are people we just won’t see again. It’s heartbreaking. This loss is overwhelming. So maybe be a little kinder when you talk about people grieving the slow destruction of the community space which brought us together. And if you’re starting a new platform – accessibility, and trust and safety should be beginning concerns, not future ideals.

Some people have asked what makes Twitter different and why the other solutions don’t work as well for the disability community. I’ll try to sum it up as best I can, but there are multiple factors. It centres on the point about different circles. Our community has a number of prominent people, but it’s not a leader-based movement. The subgroups of the community tend to be loosely built around location, condition, type of activism, and the people who are popular voices. The overlaps between these groups are huge. But, and this is crucial, they are not a circle. There are plenty of antagonisms and major disagreements and baggage because this community, for many of us, is our main source not just of information and activism but support, friendship, etc.

Now, let’s look at energy. It takes energy and commitment to run a discord or a community. Most of us who thrive on twitter do so because it’s set up to be able to dip in and out as we are able to. We can drop out and come back to those conversations as and when we’re able. Most of us do not have a responsibility to be here at specific times, doing specific roles. If we do, it’s typically understood to be flexible and most importantly, it doesn’t come with the responsibility for moderation. That remains twitter’s obligation. On discords and subreddits, someone needs to be doing the moderating. Someone needs to be in charge, even nominally. Someone needs to be responsible for keeping it going. 

On Twitter, there are tools you can use, like blocking, without losing access to the wider community. But if you fall out with a mod or owner where they run things, you can lose all of it. And people will have different priorities – direct action, mutual aid, political work, peer support, education, etc. Needing to have different boards to check for each one takes energy. That works for some people, but it’s possible on twitter using lists and notification preferences. For a lot of us, we need the joined up single feed (I do use lists for a couple of specific interests but have to remember to check them). It takes energy to switch between places. Especially if each different arena has different norms and rules for interaction. 

So on an individual level, places where you have to jump between servers and boards take a lot of energy. On a community level, it severely reduces the cross-pollination. Our community thrives because we are in the same space, sharing ideas, insights, fears, hopes, plans, practice. Sharing people’s tweets, commenting on them, pulls ideas from these disparate groups and propagates them through the wider ecosystem. You don’t get the same effect when you only see the things you have specifically signed up to see on specific topics, only what you’ve already thought to look for. As part of this decentralised, patchwork community, we often need knowledge we don’t know we’re missing. 

It’s a much bigger topic than I can go into here, so I haven’t even touched on how the interplay between different civil rights movements functions and how we need to be part of larger conversations where other activism is being done.

So that’s why FB groups, reddit, discord, etc don’t fit what’s needed. What about the other twitter-like alternatives? Accessibility and accepted norms. As I said earlier, most new ones have not built accessibility into their UX, so many in the community are left out. 

Mastodon already had a number of issues when it first became a viable alternative for a couple of reasons. First, the major social restriction on self-promotion. Disabled people are much more likely to have the kind of creative, freelance work which requires self-promotion. because it’s part-time, WFH, etc, and adaptable, so many disabled people are writers, makers, artists, consultants, etc. That needs exposure and networking, and that’s a big part of the community. So is mutual aid, as being disabled is extraordinarily expensive. 

For Bluesky, it’s the ability to block people. Any marginalised person can tell you (and this goes back to the moderation point), we need to be able to block people for our own safety. Free-for-alls will only ever favour those who care the least for people’s wellbeing. If you want your space to be an all-out rage fight, great, but that’s not what our community needs. We are very used to dealing with people who range from indifferent to our survival to actively wanting to harm us, so we need to be able to take steps to protect ourselves. You cannot build a community which has both the kind of open-world access to conversations twitter has and the safety the community needs if you can’t block people. Even if you have stringent trust and safety protocols, at scale those will typically end up targeting us too. 

This honestly is not doom-mongering or fear of change. We want a platform which fills these needs without all the nazis and constant harassment by a toddler with too much money. If someone builds one which doesn’t see disabled people as expendable, we’d be thrilled.

So that’s a non-exhaustive but hopefully illustrative explanation of why this model has worked and why alternatives so far do not. Many people still won’t get it because they don’t experience energy or info processing limitations. If you don’t find executive function, decision making, focus, communication and interaction to be physically draining, you probably won’t get why this loose network of interconnected groups in one large, asynchronous, multi-faceted, open conversation works. 

And that’s not to say everyone is included on twitter, of course. There are plenty of problems with accessibility and community engagement there, but the balance we’ve found has been powerful and transformative. It’s allowed the disability community to learn about itself. 

Every single thing about this article from the Sunday Times is horrifying (here is a paywall-free link). One of the UK’s papers of record is violently misrepresenting Gillick Competence – a foundational feminist victory and central to the safety of all children, but especially girls.

The Times is lying about Gillick Competence. The parents are too, but the Times has responsibility to accurately represent the law and instead they are lying about the history, origin and present use of a crucial human rights law.

The Gillick case was about giving under-16s access to the contraceptive pill, which we understood was necessary despite the risks of the Pill because inaction is not neutral.

They keep referring to a 16-year-old as Gillick Competent. 16-year-olds are not Gillick Competent – it only applies to children under the age of 16. Once you are 16, you just have all rights of privacy in healthcare. The Times is calling Gillick a ‘loophole’, when it is a foundational human right.

For people who like to talk about safeguarding, they do not seem to understand anything about what safeguarding actually means. Gillick is a core safeguarding policy. Not all parents treat their children with compassion and respect. Not all parents support their children. Some of them, for example, go to national newspapers to misgender them and call them gullible and foolish.

You may be sad your child has not talked to you about their medical treatment, but perhaps examine why your child did not feel able to talk to you instead of attacking the laws which keep young people safe from abusive parents and ensure they have access to healthcare.

That THE TIMES is so badly reporting on Gillick Competence should be a massive wake-up call for any of the transphobes who like to pretend they’re feminists, but it won’t be because they don’t understand feminist history or the actually hard-won rights we have. When prominent GCs began undermining Gillick years ago, we begged them to listen because they didn’t seem to understand what they were throwing away by fixating on trans people (UK GCs, so mostly ostensibly left-wing), we were told we were stupid, paranoid and hysterical. Now they just don’t seem to care at all. It doesn’t matter who else gets hurt, as long as trans people don’t get support. It doesn’t matter how many girls don’t get access to the kind of care they need to keep themselves safe, as long as trans kids can’t either.

Decades of feminist work are being undone in so many areas by GCs. They talk about ‘hard-won rights’ but usually refer to things which were really patriarchal demands (separate spheres, etc) because they don’t understand feminism, while they dismantle actually hard-won rights.

Also interesting to note the Times using the EHRC’s definition of ‘biological’, which they’ve admitted is not referring to biology at all but simply to legality. I don’t know if it’s accidental or a propaganda shift, because there is nothing ‘biological’ about a name. Biological name. Unbelievable.

Add into all this the ableist attack on bodily autonomy – Gillick is a key disability rights law too, because it enshrines the right of the person to be the primary decisionmaker in a world where disabled people are presumed incompetent even when there’s no evidence. It is not accidental that they use autism as a key attack vector in anti-trans rhetoric – their paternalistic, incredibly dangerous beliefs about autistic people’s capacity are perfectly matched to the medicalised, simplistic views of everything else. The disability community, and #ActuallyAutistic people in particular, noted the clear comparisons between ‘Autism Moms’ (no, not just anyone who’s a mother of an autistic child, it’s a specific thing) and ‘rogd parents’ early on and tried to warn people.

Everything the GCs are doing to undermine rights to medical treatment for trans people will have catastrophic effects for disabled people too. In another example of ‘hard-won rights’, our right to determine our own medical treatment and care has taken decades of graft. Our right to privacy from our families (who are often our first carers), our rights to autonomy, our rights to protect ourselves from abuse from family/carers – these are all on the line as well. The GC fixation on hurting trans people will damn us all.

I hate having to go over ‘identifies as a cat’ again because it’s genuinely one of the most upsetting debunks out there – yes, there are schools in the US which have cat litter in their classrooms and it’s because they have to barricade themselves in rooms when mass shooters come, and lockdowns can last for hours. Children need somewhere to relieve themselves. There are whole kits available. Someone took a photo in the US of a cat litter bag in a classroom and it got spun up into a whole conspiracy theory. It is a standard right-wing tactic of taking scraps of truth here and there (a photo of a bag of cat litter in a classroom, kids wearing cat ears, etc) and using them to construct a wild narrative to scare ordinary people.

It’s been comprehensively debunked on both sides of the Atlantic but has been such a right-wing talking point for years that it just keeps cropping up with people from their friend’s daughter’s friend’s school stories. In the UK there are typically three things being conflated: weirdly obsessive transphobic adults, small kids who occasionally have a few days of pretending to be a cat and teachers just getting on with it, and teenagers wearing cat ears because it’s part of a subculture. You can buy cat ears in Asda, ffs. It’s not remotely unusual.

Some teenagers will even, and I’m sure this will shock you, be weird AF and act like cats because it makes their peers laugh. Like with all such behaviour, the general approach from teachers until this moral panic has been to just ignore them and get on with teaching. On a less fun note, there are rare occasions where it could be a coping technique or a trauma response and it’s pretty well known that bullying kids who do that is Not A Good Response. In zero situations does this result in litter trays being offered. Obviously.

Of course, now there’s an entire global wild conspiracy theory about it driven by some of the most bitterly fixated people in the country, that means sometimes having to remind teachers that bullying kids isn’t a good thing, however weird they’re being. This particular round of national government bullying seems to have been sparked by a case reported to the Daily Mail by a transphobic mother whose daughter and a friend were held back after a class where they drove another child to tears. The daughter recorded the interaction with the teacher. [Transcript at the bottom of the post – I won’t send people to the DM website]

The mother insists it’s because the other child ‘identifies as a cat’, and this is what has been widely reported, but since the reporting includes the daughter referring to her as a cat, a cow and suggesting identifying as a kangaroo, the transcript’s focus on the girls insisting you can only be a boy or a girl and you can’t be anything else, and their use of the pronoun ‘they’ for the targeted child, it seems much more likely that the child is nonbinary and these girls have been bullying them by saying they may as well identify as a cat or a cow, and that they need mental health treatment because they’re obviously crazy. Teachers not allowing bullying in their classrooms is not actually a bad thing. A couple of journalists from non-mainstream publications took the wild step of actually asking the school and discovered, shockingly, there was no student ‘identifying as a cat’.

Now Katherine Birbalsingh, great defender of Western Education (TM), has posted a dodgy anonymous WhatsApp screenshot which is clearly meant to be shared around as if it is a personal story (complete with delete as appropriate ‘my child/children is/are’), and after being embarrassed by that has declared furries are a problem which needs to be dealt with. Not one of them knows what furries are. Furries are just another subculture the moral panic crew like to misrepresent. They don’t believe they’re animals; furry conventions don’t have litter boxes; it’s just a fun hobby. Kids wearing cat ears isn’t actually a big deal. They’ve been doing it for decades, it’s just people didn’t care because obsessive adults hadn’t constructed a conspiracy theory around it yet.

And apparently none of these people have met teenagers. Giving them an easy way to freak out olds by playing this straight probably wasn’t the best move if you wanted it to stop. For all their ‘let kids be kids’, they don’t much like kids being kids.

Anyone trying to pretend this is just about x specific ‘incident’ reported by credulous journalists, and insisting it’s not related to the mythic moral panic spread from the US right wing across to the UK and NZ (at least) is lying. We’ve watched it propagate for years. It’s the exact same story over and over again and people believe it because it’s got all the elements of useful right-wing propaganda – children, the good old days, discipline, political-correctness-gone-mad, some kind of implication of sexual perversion – and there has never, ever been evidence of any school implementing any of the measures screamed about by the tabloids (which now includes the Telegraph, of course). Not fighting kids on wearing cat ears is reasonable because it just isn’t a big deal. Not allowing kids to bully children for being weird is a good thing. Not allowing kids to bully people for being LGBTQ+ is even better. Christ, we could have done with more of that when I was a kid.

It’s all a lie. You are being lied to. It’s really worth asking why you believe it so readily, and why it’s such a useful lie to tell. Look at what they’re trying to use it to roll back. Look at who gets hurt if this kind of moral panic is allowed to flourish and is backed by the government. Look at the laws they’re trying to dismantle and the rights they’re trying to remove and ask yourself how this benefits that. Do you really want to go back to the days when the weird kid was brutalised? When boys were so viciously harmed for stepping even slightly outside the boundaries of the worst kinds of masculinity? When girls couldn’t stand up for themselves? When boys sexually tormenting girls was just kids being kids? That all still happens now, of course, but it’s not supposed to be sanctioned by the schools. That’s not what we should be pushing for.

Teacher: How dare you, you’ve just really upset someone? Saying things like you should be in an asylum.

Girl: I didn’t say that. If they genuinely identify as a cat or something then they are genuinely unwell.

Girl 2: Yeah, they are crazy.

Teacher: You’re questioning their identity.

Girl: It wasn’t a question. I was just saying about their gender. If I said anything about them…

Teacher: Where did you get this idea there’s only two genders?

Girl: I just said my opinion. If I respect their opinion, can’t they respect mine?

Teacher: It’s just not an opinion. This is not an opinion.

Girl: It’s basically the same as I said. There’s only a boy and a girl. There’s no other private part.

Teacher: Gender is not linked with that. It’s not linked to the parts you were born with. Gender is about how you identify. Which is what I said right from the beginning.

Girl: I don’t agree with that so why should I have to listen to that?

Teacher: Biological sex…There is actually three biological sexes, you can be born intersex. because you can be born with male and female body parts or hormones. Did you know that?

There’s three in terms of biological sex. In terms of gender, there are lots of genders – there is transgender, there is agender who are people who don’t believe that they have a gender at all.

Girl: But you can’t have that.

Teacher: What do you mean you can’t have that, it’s not a law.

Girl: It’s not a law, it’s our opinion, we don’t agree with it. You have a vagina, you’re a girl, if you have a penis, you’re a boy.

Teacher: But cisgender is not necessarily the way to be. You are talking about the fact that cisgender is the norm, that you identify with the gender that is the sexual organ that you are born with. That’s basically what you’re saying which is really despicable.

Girl: How if I called my mum right now she’d say…

(crosstalk)

Teacher: Well that’s very sad as well then.

Girl: How is it, loads of people agree with that there’s only a small minority of people who think…

Teacher: Why do you think we have so many problems in the world with homophobia?

Girl: Yeah but that’s not homophobia, that’s transgender. I’m fine with lesbians and gay people, I’m not against them.

Teacher: But gender is… there is a link between it.

Girl: How?

(crosstalk)

Teacher (I think): There is a change.

Girl: But how…they can’t…unless you get a penis attached, no you’re not.

Teacher: You’re confusing sex and gender.

Girl: No I’m not because if you have a vagina youre a girl, if you have a penis you’re a boy.

(crosstalk)

Even then cause you’ve got those genes…

Teacher: Gender is about your identity, how you identify, it’s not an opinion.

Girl: Yes it is.

Teacher: No it’s not and if you don’t like it you can go to a different school. I’m reporting you to [redacted]. You need to have a proper educational conversation about equality, diversity and inclusion because I’m not having that expressed in my lesson when I’m teaching you about…you can be who you want to be, how you identify is up to you.

(crosstalk)

Girl: They just don’t say it because all this happens

Teacher: Maybe it’s because they’re polite, they’re sensitive.

Girl: I haven’t said anything at all but it’s because they turn around and say things, so I said “how can you identify as a cat when you’re a girl?”

Teacher: They’re now writing a statement. I would imagine that you’ll be asked to write a statement as well.

Girl: We will. Yeah we will.

Transcript from recording on Daily Mail website – the two girls may be occasionally mislabelled as I couldn’t tell the difference between them, but they were arguing the same point.