I hope you’re doing great. The idea for this blog came from two things. First my partner. He read my blog before it went live and went absolutely ballistic at the behaviour of ‘Ed’ (not his real name). It was so bad, I took him out for a walk. He still felt incandescent with rage about my treatment there and talked about the unfairness of how little neurotypicals understand about the lives we are expected to live – privileged as he and I are in our ways. The second part of the idea was from my good friend Dr. Christopher Higgins.
Christopher Higgins: “I wonder could you write a blog on NT victimhood and this ‘civility politics’ surrounding autism and reaction to leftwing movements and protests. It’s put me in mind of the Lib Dem shouting at you for calling the Tories racists”*
Jorik Mol: I shall! What a great idea!”
Christopher Higgins: Or, indeed, how autistic campaigners can respond to civility politics being deployed when they call out the system for how shit it is
This is that blog. The quote he used, I’m adding here in full, as it’s worth reading.
But we’re not in the politics of adults (…) We’re in what the journalist and disability campaigner Frances Ryan calls “civility politics”, where you can cause people calculable and demonstrable pain and hardship, deliberately (with a £20 universal credit cut, for instance) or by accident (with incompetent decision-making) – but if someone calls you “scum”, they’re the ones destroying the very fabric of society.
It’s the same culture in which someone can stand on a global platform while complaining they have been cancelled; in which Brexiters, five years after their victory, are still whining about the remainiac media. The language about fake hurt and ersatz victimhood is ceaselessly deployed; nobody really swallows it, but it’s not there to be swallowed. It’s there to undermine the idea that there could ever be a real victim, or genuine hurt; it’s there to make empathy a moot point, so you can get on with the politics of not feeling any.Zoe Williams, Guardian. https://www.theguardian.com/commentisfree/2021/sep/27/angela-rayner-called-tory-ministers-scum-and-now-theyre-weaponising-it
I think Chris has an amazing point. As an autistic activist in the NHS, I was often met with bafflement and frustration when I talked about behaviour and systemic issues that had never come up for the people I was speaking to.
When speaking to neurotypicals, I’m still sometimes surprised about how little they know about us. We are expected to understand them and speak their language – be them. If we can’t be them (we can’t) then we have to mask or perish. Often, the outcome is the same whatever we do.
This is a tricky topic, which I’m trying to address with my usual combination of incisiveness and levity, but I will try to shy away from being too harsh. This is actually a difficult topic that has deep connections with other liberation movements, worsened by the double empathy problem.
Since I’m not very active on social media, I have decided to limit my investigation of NTs being triggered by autistics telling them to stop being so awful, to my actual real-life experience. I will also try to keep my sarcasm and sense of schadenfreude to an absolute minimum.
I have decided to write it in the form of letters. I know, how 18th century of me. I knew that literature degree would come in handy at some point.
These letters will be addressed at neurotypicals, so please use them at your leisure.
Letter 1 is for people who believe they don’t know any autistic people and have no knowledge about neurodivergence.
I’m so proud of you for existing. Back with you in a bit.
Erm, soz. Let’s try again.
Thank you for reading this, you’ve probably just met the first autistic person you’ve ever been aware of as autistic. Welcome, we exist. But after you find out, the first thing you will probably feel is anxiety. Like you’re eight years old again and you’ve just barrelled into the kitchen in your muddy wellies and your hear your mother yelp your name.
You don’t want to do anything wrong, of course. You don’t seek out to damage those people over there, you’re just living your life! You don’t mean anyone any harm! You can’t have been ableist, you adore The Big Bang Theory! There’s lots of autistic people in that!
No. Your ignorance itself is damaging. Because it means that you so far have had no interest in our lives and we fall outside of what you consider your in-group. If the only way you connect with us is through false media narratives with no reference to the word ‘autistic’ nor any input from actually autistic creators; you are avoiding us.
Willingly or not, you’re allowing us to fall into your ‘outgroup’.
That makes it easier to let us face the inequalities we face without caring. You are letting us suffer. You owe it to yourself to engage with actually autistic art, media and people. You can be on our side, if you choose to be.
For letter 2, it’s time to dig deeper. This one is for neurotypicals who have engaged with media about autism and believe that it’s ‘live and let live’. They believe themselves to be relatively kind and progressive. They’re the ‘yer dad’-opinion havers, as defined by Philosophy Tube in her video below from back in 2018:
Thank you for existing. You make the world a better place by continuing to in it.
See you in a bit.
(I’m doing a thing, don’t question it.)
And now to NTs.
I get it, you’re having a tough time accepting the ‘label’ neurotypical. You’re not ‘neurotypical’, you’re normal, you’re you. And you don’t get why I would separate myself from you, as a fellow human being.
I get it. It’s awkward. Because you know a bit about autism and you know that we have different sensitivities and are socially different. We’re quirky and strange and ‘gloriously ourselves’. You love us ‘just the way we are’. You may even know that we face discrimination on a significant scale.
But when you say you want to help us and we refuse, you get upset. When we kindly correct you when you say ‘everyone’s a bit autistic’ you feel attacked and feel that your good intentions – helping us – are suddenly making you into a villain of some sort. No! You’re the good guy!
Of course it’s not ableist if it’s done with good intentions! Like that film by Sia! She clearly loves autistic people. Why else would she make a movie like that? It comes from a good place and we need to respect that.
No. Oh no. Great harm can be done with good intentions, remember what that path to hell is paved with. It ain’t Disability Living Allowance money, that’s for sure!
No. In the same way as it’s possible to be racist and not intend it, you need to become aware of your own thought patterns and how you can be a better ally.
Allyship is not about leading, it’s about listening. In the same way that I try to listen to others that haven’t had the privileges I’ve had. I’m queer, an immigrant and autistic. I’m also disabled. But I’m not trans, I’m not homeless and I don’t have a chronic illness. I am able to live independently, work and be with the man I love. I’m white and pass for British in the UK. I’m a male and I will never face discrimination because of my gender, gender identity or language skills.†
If you are an ally, or claim to be, learn and listen. Then, act on what you learned. Don’t vote for centrist, reactionary or fascist candidates. Connect with your friends and family and talk about neurodiversity. Your privilege will help us, but fighting with us about why we don’t appreciate your good intentions is a massive waste of everyone’s time.
Be kind, be humble. We’ve had no choice but to be.
The last letter is for NTs who work with autistic people. Ableism is rife in this area and it’s exactly where it has the least right to be. But, with the history of psychiatry and, well, the world, is it a surprise? (see last week’s blog)
Here we go.
You’re the best. I love you, thank you for being my people.
I’m a fuck-up, I’m a moron and I do and say stupid shit sometimes. But I seek to do as I say and I am inspired by you, all of you, to make the world a better place. And one very special autistic is going to get a really big hug from me in a few minutes.
As someone who works with and for the access of disabled people, I get it. I see what you feel and I recognise your pain. I get your sense of unfairness and hurt.
I get that there are few things harder to stomach than those very same people calling out your own current and past behaviour. I understand. But, please, without resentment, look at your own words and actions. Our lives depend on you doing so.
When we say that ABA is conversion therapy, you say that you’re only following the science. When we ask you whose science that is, you call us antiscientific.
When you say workplace access and reasonable adjustments have to rely on ‘both sides meeting in the middle’ you are drawing a false equivalence between your power and mine. You are saying that my needs are less important than yours, whose needs are already being met.
If you work in education, healthcare, social care or any organisations that support autistic people and you’ve put someone on a waiting list, no you haven’t done enough. ‘I can only do so much,’ is useful, until it’s an avoidance tactic. You are in a unique position to advocate for more money and services given to autistic people. Yet you put us on a waiting list and believe you’ve done a great job. You haven’t. You have not done anything. If all you can do is shrug your shoulders, you’re definitely not fighting hard enough. Self-care is important, but not at the expense of others. Self-care is vital, but should never be an excuse to not go the extra mile, like an autistic person would go for their community. There has to be a middle ground, rather than one in which the only person suffering is the one who’s not getting the support.
If you tell me that autistic people “aren’t the only ones who have it rough, what about people with anxiety?” and then I answer “Well, you know that practically all autistic people deal with anxiety, too. Plus autistic anxiety and neurotypical anxiety are different not just in degree, but also in kind” – maybe don’t say “Well, you just want to be right all the time.” Especially if you’re high up in patient experience in the NHS.
If you were happy to hire me as an autistic teacher who is open about their struggles, maybe don’t repeatedly ignore kind requests to not bellow at the students when I’m in the room. Or to be actively aggressive, demeaning and exclusionary when I remark on the noise in the classroom. Or then fire me at the first opportunity, after I have a meltdown due to sensory overload.
If you’re a recruiter or HR professional hearing these stories and say “Gosh, that sounds inhuman,” please, don’t. If you have ever employed autistic workers, you have done this. You have placed the needs of an autistic person to function against those of the organisation and chose against us, repeatedly. This is normal. By saying this treatment is inhuman, you’re detaching yourself from it. You’re ‘one of the good ones’. You’re not. You’re part of a deeply ableist system and you’re part of it because of the privileges you already have. It detaches you and means you can happily carry on benefiting from it. At our expense.
If you’re insulted by this and that I’m challenging your learning and expertise without experience, you’re wrong. You may even have a psychiatry PhD and been working in the field for twenty years, well, I’ve lived my entire life like this. You get time off from us. You’re a tourist in our lives, like the crowds at Bedlam and the Salpêtrière, who on a Sunday would come round, pay a penny and laugh at us behind glass. You don’t know what it’s like. You fighting us only makes it worse.
If you insist on us being pro-active, positive or polite, if you want us to mask (consciously or not), if you insist on specific language, tone of voice and attitude; you are imposing a system upon us that empowers you against us. You are gaining, we are losing. It shouldn’t be like this, but you’re making it so.
Stop it. Be humble. Learn. We need you. Stop being our greatest enemy for the purposes of your own ego. Your ego should not be the deciding factor.
In fact, in the way I approach my work, I seek to advocate without ego. Without any expectation I’ll make the slightest bit of difference in my lifetime. We are on a burning planet with rising tides of fascism. We are a failing species in a failed system. You don’t need gratification. You don’t need pats on the head. You don’t get a cookie. Just do the right thing. We certainly are.
If that is impossible for you, if you insist on hope, if you insist on the act of making a difference being fundamental to your personality, then good luck to you. But you may not be able to be of use. I do what I do because I have no other choice. If I did, I’d be neurotypical.
You do have another choice. You can take time away from the oppression we face and you don’t. You could retrain, be a cog in the capitalist machine and be happy. We can’t. Your power is our disempowerment.
Whether you want to believe it or not, your work is inherently political. Your work is undoing social inequalities. If you have committed to these inequalities in the rest of your life, as they benefit you, you may be in the wrong job.
I want you on our side. Fight with us. But not for your own sake. For our sake. Without expectations, without ego. With the willingness to fuck up and learn. Watch this video by Carlos Maza. It and my partner’s goodhearted nihilism make up what I believe should be at the centre of our mutual struggle.
With love and kindness,
So, that turned into another ranty one at the end. I might just need a stress ball. The last thing I’m sharing is a video by James Stephanie Sterling and Laura Kate Dale (autistic hero. Her book Uncomfortable Labels is truly amazing and I recommend it heartily: https://uk.jkp.com/products/uncomfortable-labels Buy it from the publisher so Laura gets money for it). It’s about microtransactions in videogames being directly aimed at people like us. Since video games are such an important coping mechanism for many of us, monetisation tactics in video games are particularly vicious.
See you next week!
* In 2019, Chris and I were in Oxford at the Jericho St market. I was still working in the NHS and there were campaigners there for the local elections. I spoke to the Greens, who were very interested in building on a neurodiversity network. I also spoke to Labour, who already had Neurodivergent Labour at that point. I was then addressed by a Lib Dem candidate. We started talking about autism politics, which sounded really interesting to him, he hadn’t thought about it yet. I noted that I spoke to Norman Lamb, then a Liberal Democrat MP and the chair at the Parliamentary Enquiry on the Autism Strategy in March that year. I then asked him point blank: ‘why should I trust your party to not betray me as an immigrant, in the same way you betrayed me as a student in 2010, as a user of health services until 2015 and as a queer person in 2017?’ He didn’t like that. At least they were not the Tories, he said. “Well, yeah,” I said, “the entire reason for the Tories’ existence is racism.” He then got genuinely angry at my allegation, since he personally knew non-racist. I said that was great, but that capitalism as it stands is a racist system that targets people who aren’t white, cishet and able-bodied. The Conservative party wants capitalism as it stands, with all the racism and bigotry that entails. It seeks it out and feeds it, because racism feeds the Conservative party to such an extent that it is it’s raison d’etre. “Capitalism is great and I will always stand by it.” He was shouting now about me being a bigot. Chris wisely pulled me away. This was in the before-times, before Labour lost the 2019 election and the party has shifted ever further away from socialist values. Ah well.
† Though on Friday, I nearly lost out on a job because a recruiter wanted me to upload my own Settled Status document, after telling them I legally and practically could not. It’s a whole thing and prohibitively difficult. Intentionally so. In the end it was fine, but I had to say that if they insisted on me performing this task, they would be excluding me on the basis of my nationality. Not a pleasant conversation to have. Fuck Brexit and fuck all borders, while we’re at it.