I will probably update this from time to time as I think of more stuff.
1 – if someone is using a wheelchair and has someone with them, ALWAYS start from the assumption that the person using the chair is the person you’re dealing with. Speak to them normally. If appropriate, their carer will correct you. I can count on one hand the number of times strangers talked to me as an adult when I was using the chair (3.5 years full-time, on and off since).
2 – Wheelchairs are not tragedies. They are beautiful, miraculous things which allow people freedom. Using one when I need to allows me to conserve energy, means I can do much more than I would otherwise, reduces recovery time.
3 – Referring to yourself as disabled is not ‘giving up’ or ‘limiting yourself’. It gives you power to name, and therefore deal with, the ways society still sucks at being accessible. It gives you a baseline to start from in building a good life.
4 – Disability is a massive, massive umbrella. Static, mechanical impairments like paralysis and amputation are commonly thought of as ‘real’ disability, but that’s a fraction of the whole.
5 – Importantly, though, a common way of highlighting ways invisible disabilities affect people, that ‘you wouldn’t tell someone with cancer to just cheer up, in a wheelchair that they just need to think positively’ is, unfortunately, not true. People say that shit ALL THE TIME. Like, all the time. I have no idea how many times I have been told that I should just stop taking all my meds, or just try harder to walk, or think more positively, or have more faith in Jesus.
6 – Disability intersects with every other form of marginalisation. Disabled POC are much more likely to be over-policed, treated as threatening, have excessive force used on them. Disabled women are vastly more likely to be victims of sexual assault or domestic violence. Women with mental health conditions are more than four times as likely to be sexually assaulted, and disabled people rarely see justice because they are not treated as ‘credible witnesses’. Disabled children are vastly more likely to be bullied and to experience long-lasting trauma from their treatment. (updating sporadically because doing other stuff too)
7 – There is no disability hierarchy. People keep trying to impose one, but as soon as we draw those lines, the lines become shiftable. Saying addicts don’t count because they ‘chose’ it means you can say people hurt horse riding ‘chose’ it, or war veterans.
8 – Pain is not a morality issue. You are not a better person because you endure pain unnecessarily. We all make decisions about what we do about our pain, but it is not weakness to take medication. Pain is a major health risk.
9 – Medical treatment is not universally good or healthy. Many disabled people have trauma from bad experiences with medical professionals, and so support cannot be conditional on forced treatment.
10 – Disabled people are the targets of many, many charlatans. However, they are not ‘stupid’ for engaging with them when medicine has failed or hurt them. It’s important to fight the charlatans, not the people who are just surviving.
11 – Parents and caregivers of disabled people are important allies, but they should not be the spokespeople for disability. Interview them on issues of caregiving, but find disabled people to talk about disability.
12 – Disabled people are not a monolith. Disabled people can absolutely be brave, selfless, kind, but we can also be bitter, angry, devious, boring, honest, smart, positive, pessimistic, logical, conspiracy-theorising, gullible, shrewd, loyal, cheating, sexual, asexual.
Some of the first disability equality training I ever got included stock phrases used about disabled people. While most people rightly recognised that ‘disabled people are liars/fakers/whatever’ were false, they thought that ‘disabled people are brave and good people’ was true. No. Many of us are brave and good. Many of us are assholes. We’re just people.
13 – If you can, learn some basic signing. Hearing society excludes Deaf and Hard of Hearing people in so many ways, but the assumption that the full weight of responsibility is on them to communicate with us is ridiculous.
Don’t say ‘never mind’ if you realise someone is Deaf, ask how they want you to communicate, tap their arm lightly if you need to get their attention (don’t wave wildly in their face, don’t snap your fingers in front of their eyes, etc).
Recognise that Deaf Culture is a vibrant community, and that ‘curing’ Deafness is not a positive idea for many people. Do some research into how cochlear implants actually process sound, and how unpleasant they can be before sharing any inspiration porn videos about them. Understand that Deaf people are right to be suspicious of the medical model of disability, and that some people might want treatment while some don’t, and that it’s their choice to make. Again, see earlier point that treatment is not universally a good thing.
14 – See mobility aids as part of a person’s body. Treat them with respect. Do not move them without explicitly asking first. Never move a person’s wheelchair without asking them first. Never lean on it unless offered. Do not, as happened to me, hang your shopping off the handles if you are a total stranger and in a lift with a person using a chair.
A person may offer that if you are friends, in which case feel free to take them up on it, but let them offer.
15 – Fatness. Stay with me on this.
a) Many disabled people are fat. They might be fat for a huge variety of reasons, just like abled people. They might be more likely than the abled population to be fat because of specific conditions or medication. However, and this is important:
b) It doesn’t mean they’re the ‘good kind of fat’ while abled people are ‘the bad kind of fat’. People are fat for all kinds of reasons, and none of them are a moral issue, and very little about other people’s fatness is relevant to you.
c) Some people are fat because they are disabled, and some people are disabled because they are fat. IT DOESN’T MATTER WHICH CAME FIRST.
If a person is using a mobility scooter, it isn’t ok to mock them for using it if they are fat. It isn’t ok to mock them for using it at all. If a person is fat enough to be disabled by it, they are still disabled, just like every other disabled person, and are entitled to the same rights of access that everyone else is. Their health is between them and their doctor. It’s fuck all to do with you.
16 – Do not, with no prompting, ask someone ‘what’s wrong with you?’ You might be curious. You might be interested because you like them. Doesn’t matter. They’ll tell you if they want to. Don’t try to cover it up by saying it’s just cause you want to know how to help. People have a vast range of different needs even if they have the same diagnosis or impairment. Instead, say ‘Can I do anything to help?’ They’ll tell you if there is. Be honest about what you can do, don’t hurt yourself in order to help them, don’t help without asking. If they say no, LET IT GO. DO NOT INSIST ON HELPING. Say ‘Ok, let me know if anything comes up’, and move the fuck on.
17 – related: Do not, if they do decide to tell you what their disability is, immediately list everyone you know who has died of that condition.
This happens all the time. It’s never a good idea. For fucks’ sake.
18 – Accessibility is bigger than ramps and hearing loops. Those things are fundamental and useful, but they’re not enough. We have to change the way we, as a society, understand ‘worth’ and ‘value’, and then adjust our behaviours to match. For example: as a society, we believe that being able to live without the support of anyone else is the only ‘real’ way to be an adult. It’s bullshit. There are maybe a dozen people worldwide who do not rely on anyone else.
All of us rely on other people to some degree – we rely on them to grow our food, to transport it to nearby shops, to build shelters, to supply electricity. We don’t suddenly not need them just because we pay for their work. We all rely on other people to some degree, and some of us rely on each other more than others. It shouldn’t be necessary to live alone, without any financial, social or physical assistance from anyone, to be considered a functional human being.
Instead, we could all see that we’re part of a huge web of give and take that has many more forms than just monetary transactions. We have value beyond our ‘economic viability’. We could teach kids that and then newly disabled people wouldn’t have to spend years deprogramming.
19 – Not all forms of accessibility look how we want them to. Trigger warnings are accessibility issues as much as ramps are. It doesn’t matter that you don’t like them, it’s a disability issue.
20 – Sometimes, different accessibility needs contradict each other. Some people might need smooth pavements with no raises, while that can make navigation tough and/or dangerous if you are blind. Some people might need to type, while the sound can be overwhelming for others. It doesn’t mean that we don’t try to find ways to ensure that everyone has what they need. Sometimes that is as simple as different textures of pavement to denote different parts, but might also mean that you have different seating areas, or give lectures in multiple formats.
We are not absolved of our obligations to accessibility just because it can be complicated. If we approach it in good faith, by asking people what they need and trying to find new solutions, we will usually be able to do right by people. Disabled people, for the record, are often excellent problem solvers because of this. We have so much experience of finding ways around the world and its inaccessibility.
21 – related: Disabled people have value. We are a vast, mostly untapped resource of ingenuity, information, insight. Employ us or talk to us because the more diverse a group is, the more likely it is that you’ll get great ideas. New ideas.
In response to this fantastic article: Forced to Fake It: How the System forces Disabled People to Lie
I know, more than many, the toll on trust that Munchausens by Internet has taken from us. The knitting world (weirdly) is chock full of fake deaths, fake illnesses. However, there is a common thread in the reactions to these weird and awful cases which disturbs me: that people like this make life harder for people with ‘real’ problems.
The only people who make life harder for us are the gatekeepers, the people who decide that they get to decide who is sick or disabled enough to deserve assistance. The fakers might well be grifting for money, or they might be sick in a way that isn’t obvious (spending the vast amount of energy it takes to keep systematic lies, personalities and often a few supporting characters going is a type of breakdown, and though it doesn’t make it any better for the people who trusted them, it is something which should be approached with caution).
But the people who really do us disabled people harm are the ones who, having seen these fakes, decide to be arbiters of justice by telling everyone who is sick and who isn’t. They pick over the inconsistencies of illness, the way we, as this article points out, are not allowed to be just disabled – we have to be disabled in the *right* way, in the way that abled people understand, for us to gain access to necessary services. I have to use a stick even when it hurts my wrist and elbow more than it helps my walking, because otherwise people get frustrated with me for walking so slowly, and don’t give me a seat when I desperately need it. They need the visual cue or they dismiss me as just another fat, lazy slob who wants an easy ride. The inconsistencies these ‘sleuths’ find are usually there because the disability is inconsistent. I can’t explain why I can walk around on one day but not another, or the complex calculus of hope and risk I work with when I decide to do something I really want to do even though I know it will cost me. To the outside world, it just looks like I’m disabled when it works for me, and not when I want to do something. I don’t talk about all the other times when I want to do something but can’t, or have to rest when I had planned to go out, or how lonely it gets. When it comes to faking things (as we all do, whether it’s enthusiasm for a friend’s night out or a partner’s hobby or whatever), I am much more commonly faking being well. I put on a great show as the person who needs a stick or a chair but is otherwise fine. I pretend I’m not always in pain. I pretend there won’t be a cost for my choice to go out with friends. I fake being healthy.
So please, be careful with your accusations of fakery. Be careful with your righteous anger. There are plenty of people out there who deserve to be criticised; the world is not lacking in monsters. Just be aware that the fakers aren’t somehow *making* you accuse other disabled people of faking. You’re making that choice, and you have to hope that you’re not just making life a lot harder for a person with a disability you don’t understand.
By now, you’ll hopefully have heard all about how terrible a person Toby Young truly is. The man appointed by the UK government to a position on the board of the new English University Regulator believes that the Equality Act should be abolished because it is ‘ghastly’ that disabled people have access to education and that texts are not universally written by white men.
He has been explicitly misogynist, homophobic, racist and ableist, and a true litany of the Who’s Who of British Awfulness have been defending him. Kirstie Allsopp, in a now-deleted tweet, tried to blame his horrific statements on ‘Turrets Syndrome’ [sic], before saying that he doesn’t really believe the things he says and that it would be ‘a shame’ if he wasn’t allowed to take up his position.
He does seem to embody that most particular of personality quirks of the British right wing – the idea that what makes a person intelligent is their ability to not care about anything, ever. That being casually cruel is a sign of an enhanced wit, and that caring about people and wanting to not harm them is a sign of intellectual weakness. Those of us who fight for human rights are well-acquainted with this fallacy – we are frequently told that only objectivity counts, and anyone who is angry, even if they are perfectly logical, has ‘lost’ the argument. As if it was a game, and not the stuff of people’s lives. Most are not quite as explicit as Toby Young, however, who claimed he was better placed to talk about racism than Diane Abbott because he hadn’t been affected by it. His defenders, among them Allsopp, Piers Morgan, Sarah Vine, Michael Gove, Stephen Daisley, Nick Timothy, all use the notion of his intelligence as a defence for, among so many other things, repeatedly referring to the breasts of women MPs, pretending to be a lesbian to try to ‘get off with them’ in a gay bar, referring to people with intellectual disabilities as ‘troglodytes’. For some reason, for all his vaunted intelligence, he didn’t think to scrub his profile and articles before his appointment was announced. Although he has now deleted thousands of tweets, articles and messages, there was plenty of time for people to get the necessary screenshots.
He and others continue their attempt to gaslight a nation by sticking to the hymnsheet: the outcry is because the left can’t deal with people who don’t agree with them, because the left are furious that they might not have a monopoly on higher education. The fact that far greater men than Young have been brought down in recent months by far lesser behaviours is, apparently, unimportant. As is the fact that people are outraged not just by his being a leering, cruel, bigot but because he is a proud, open eugenicist. He has talked about his eugenicist beliefs in both national and international media, on the BBC, in Australia and elsewhere. He makes no attempt to hide them, because he believes his ideas are a kind of (his words) ‘progressive eugenics‘.
I’m not going to go line for line through his full eugenic argument, but I’m going to distil the main reasons why, yes, these ideas are eugenics and yes, they are dangerous – not just ethically but also scientifically. People without the backing of scientific training might not know these things, and what Young excels at is using enough jargon to convince untrained people that he knows what he’s talking about. So, as briefly as possible, here is why those beliefs are dangerous even if they don’t involve the kind of eugenics where mass murder is the solution.
The idea that intelligence can be measured by IQ tests alone is a fallacy according to the largest single study into human cognition which found that it comprises of at least three distinct mental traits.
IQ tests have been used for decades to assess intelligence but they are fundamentally flawed because they do not take into account the complex nature of the human intellect and its different components, the study found.
There is terrible power in a joke, in a story, in taking the truth and making it ugly. Do you understand, children?”
“Conference, delegates, friends. I know I speak for the whole Disabled Members Group, and for disabled people up and down the country, when I say we are deeply grateful for the overwhelming support shown by so many branches, members and elected representatives for this resolution.
When the UK signed up to the UN Convention on the Rights of Persons With Disabilities in 2009, Labour were in government, and although disabled people were already dying from Blair’s reforms, the full weight of these seemingly disparate deaths wasn’t yet understood.
A year later, when the Coalition took office, we know that they had already received a Coroner’s Report on the Prevention of Future Deaths, which would save lives if implemented. Iain Duncan Smith and Chris Grayling decided to ignore it, and the Tory/LibDem Coalition dedicated their time in government to implementing sweeping, devastating cuts to social security, health and social care – a programme which continues to cut further and deeper with every passing year.
In 2012, Disabled People Against Cuts began the formal process of triggering a UN investigation into violations of the CRPD. This was based not just on the lives lost, but on the multitude of ways the Austerity cuts have made life harder for disabled people. We have been pushing for a cumulative impact study for years, because disabled people are rarely affected by just one cut.
It takes a long time to initiate an investigation, as multiple sources of evidence have to be submitted, verified and researched. In 2014, the UK became the first government to ever be investigated by the CRPD, a shameful mark on our history. No UN investigation is undertaken frivolously – there has to be significant, verified evidence for the process to even begin.
In the years since, hundreds of people have testified, and thousands of pages of documentary evidence have been gathered and submitted. In November, the first judgement was passed: that the UK Government had committed ‘grave and systematic violations of the human rights of disabled people’.
Westminster’s response at the time was a shrug of the shoulders. In late August, the UNCRPD met again for a periodic assessment of the UK’s adherence, or lack of, to the Convention. Two members of our Disabled Members Group, John McCardle of Black Triangle and Bill Scott of Inclusion Scotland, were in Geneva to testify. The UNCRPD’s judgement on the 31st of August was stark: The UK government has created a ‘human catastrophe’ in the disabled population. They noted that Westminster has systematically misled the public about the impact of government policies, refusing to answer questions and misusing statistics to create a false impression. They particularly criticised the use of dangerous rhetoric which demonises disabled people.
Again, this has been met with a shrug. Westminster responded that they don’t accept these findings, and a few soundbites about ‘the most needy’ and ‘£50billion’. The first is a weasel phrase about slightly increasing support to a tiny fraction of people with severe disabilities while stripping it from everyone else, and the second ignores the vast economic, human and ethical cost of isolating, warehousing and killing disabled people. In 2015, in England and Wales alone, research linked 30,000 excess deaths to cuts in health and social care. That’s more than 3 deaths every single hour for a whole year. Hundreds of suicides have been linked to sanctions and disability assessments, and the death toll keeps rising.
The Scottish Government has attempted to mitigate the worst effects and ensure that disabled people have the rights and freedoms accorded by the Convention. They should not have to spend hundreds of millions of pounds to protect people from Westminster and people in the other nations of the UK should not be left behind. Westminster must, as a matter of urgency, undertake a full cumulative impact assessment, halt all impending changes until that is carried out, and immediately engage with the recommendations of the UNCRPD. Failure to do so confirms that international law is not something the UK much cares about and they have no interest in meeting their obligations. That should be noted by all countries negotiating with us over the next few years.
Scotland’s Parliament is founded on the principles of human rights for all. We work hard to be better today than we were yesterday, to fight for the people who live here whoever they might be and whatever circumstances they find themselves in. As my colleague Paula Peters said at the Labour Conference – disabled people are not voiceless. We have voices, we just need you to listen. Disabled people began this process, saw it through, and will hold the government to account on its successes and failures.
We demand justice for the dead, and rights for the living. Please support this resolution.
So there has been another mass shooting. I won’t talk about location or numbers, for reasons which will become clear. My heart breaks for the victims and their families, for the survivors and the emergency personnel who will live with this forever.
I won’t repeat the statistics or the argument. We all know them by now. We all know that knives and cars have purposes other than killing people, and that there is a bigger problem than just the weapons used. We all know, because this has happened before and we have these arguments every time. I am haunted by the tweet from Dan Hodges which said “In retrospect Sandy Hook marked the end of the US gun control debate. Once America decided killing children was bearable, it was over.”
I am haunted by the words of the trauma surgeon, Amy Goldberg, in the stunning piece of journalism ‘What Bullets Do To Bodies’, by Jason Fagone.
“Goldberg said that if people had been shown the autopsy photos of the kids, the gun debate would have been transformed. “The fact that not a single one of those kids was able to be transported to a hospital, tells me that they were not just dead, but really really really really dead. Ten-year-old kids, riddled with bullets, dead as doornails.” Her voice rose. She said people have to confront the physical reality of gun violence without the polite filters. “The country won’t be ready for it, but that’s what needs to happen. That’s the only chance at all for this to ever be reversed.””
She continues to say that black kids have been dying for decades and nobody really cares, but she thought that a class full of tiny, white bodies from a privileged part of Connecticut might do it.
I am haunted by President Obama’s speeches. Nothing, to me, more readily displays the weight of office than the way he looked by the end of his term, barely holding back the anger at how little he had been allowed to do to change things. Knowing that every speech he made was just one more in a long line of speeches about massacres, because the next one would be around any day now.
And there’s what haunts me most.
Somewhere in the US right now, the next collection of victims of the next mass shooting are going about their final weeks. They don’t know yet that they will soon be faces in a mosaic on the front pages of international newspapers, that their friends, family, neighbours and coworkers will be doorstepped by journalists looking for answers about who they were, these latest in a long line of the dead.
Somewhere, they are going through the litany of daily life. I hope their last weeks are peaceful. I hope they have moments of joy. I hope they remember, on whatever day it happens, to tell people that they love them. I hope they don’t have time to be afraid. I hope they are loved.