Monday 6th March 2023: Hopeless? Why not Take Revenge!

Hi everyone!

Before we start, I’m doing this on Friday 17th March, 13:00 – 15:00 GMT. It’s organised by the University of Exeter’s LGBTQIA+ and Disability access groups. It’s accessible to everyone in the world, so if you’re interested, please register. The topic is one of my hobby horses: conversion therapy and why it’s bad, actually. It’s during Neurodiversity Awareness Week, so if you’re looking for something validating, please watch. Even if you can’t make it on the day, I’ll see what’ll be done with the recording. We’d love to see you there.

Here’s the blurb:

Conversion therapy. It’s still not banned in the UK, despite a ban being announced as part of Theresa May’s agenda around the 2017 election. Still, no such ban is in effect. Despite several attempts at stripping or even killing the ban, the government now assures us that this new draft ban will “protect all LGBT” people. Will they? We’ll have to see.

One group, though, will not be protected; neurodivergent people. Despite the vast majority of our community being LGBTQIA+, we continue to face conversion therapy when we interact with any services purportedly set up to support us. How can we challenge this?

Conversion Therapy and Neurodiversity: Where’s the Line? will unpack the limitations of legislation, the intersections of gender, sexuality, ethnicity and disability and how the lines that separate marginalised communities have greater negative consequences for all.

Conversion Therapy and Neurodiversity: Where’s the Line? Tickets, Fri 17 Mar 2023 at 13:00 | Eventbrite

OH GOD IT’S BEEN AGES WHY HAS IT TAKEN ME SO LONG?

Well, life’s been a lot, that’s why! I’ve been busy trying not to die, get evicted, burn out or a combination of all three, which is more difficult than it first appeared. As opposed to being a child, which I experienced as highly restrictive, I love being an adult, because I’m in charge of my own existence – to a degree. There is no sense of freedom under capitalism, especially when you’re disabled. I’ll be discussing some of that, too.

This blog is about having bad things happen, because, y’know, life; and then taking revenge on life in the best way possible.

SHIT THINGS

So last time, I wrote about a talk I would be doing in London in late January. The run-up to that wasn’t great, frankly. My laptop did me a solid and decided to give up the ghost completely. As I’m a millennial who’s self-employed, I need my laptop more than I need oxygen. It did get fixed, but that took a couple of weeks.

The day after that, I was rushing home from the gym, trying to get some last-minute shopping in. I texted my mentee saying that I was going to be a few minutes late. I was rushing, and ended up breaking my bag. The zip just flew off. I was about to have a meltdown, but it didn’t quite materialise. Then, I rushed in to my partner’s room, where he was using his laptop. This was all unexpected – he was going to start his English teaching course that evening. He was rushing, too, and highly focused, trying to get his pre-course tasks finalised. This surprise was too much for him at the time and he had a meltdown when I was mid-zoom call. Something in the house broke and we were terrified of getting evicted. That seems like a big jump, but that is kind of what comes with renting in the UK.

A few days after, on the way to London, I was in an actual London cab, driven by an actual London cabbie, meaning I needed to have an actual London cabbie conversation. This was more exhausting than I thought it would be, to the extent that I left my keys and sunglasses in the cab. I tried to call the number on the receipt given to me by the driver – to no avail. The website of the company the cab driver purportedly worked for? No longer operating in the UK. Paddington Station? No capacity to contact any drivers. Soho Theatre, where I was supposed to meet the organiser of the talk? No-one had anything.

I was shaking with anxiety. There was no way to actually fix the situation. My bike was at the station. I needed to obviously go home and, y’know, sleep. I didn’t give my best at the talk – I saw the video, I was shaky and unsteady. It wasn’t that I wasn’t trying – I was trying too hard and not connecting with the audience in a way that worked. We’re going to try again and video me in a way that I can actually be proud of. I know now that I can’t do a speaking event when I’ve just had a meltdown. That sounds precious, like I’m a fucking princess on a pea; but it’s true. I need to recognise my limitations. If I’ve just had a meltdown, I can’t work. That especially includes speaking events. I will do a way worse job than I intended.

Why am I saying this? Because I want to make it more difficult for people to book me? Well, if these people want me to function at half capacity and burn myself out because I’m not connecting well enough, maybe yes. It’s an example of how I still don’t accept that I’m disabled and want to be a machine, just operating, working, doing practical work. I’m not. I’m squishy. And it’s ok to be squishy.

Not long after, I had to pay for a tonne of things. My partner’s course (he’s not making enough money of his own and there is no financial support available, so I borrowed him the money), getting the bike sawn free by a locksmith, getting keys cut. The washing machine looks like it’s completely broken to the point of being unfixable. There’s actual washing inside it now and there has been for weeks. My bike’s brake was starting to play up again, too. I hate money – have I told you I hate money? I don’t like being an adult because of money. Likewise, as a child, I was always worried about money so it’s actually a being-a-human thing, rather than an ‘adult’ thing. But that’s neither here nor there.

Then the builders came. They were lovely. They were also there for over two weeks. It was necessary and the conservatory is lovely. But the entire downstairs area was impassable with dust. I couldn’t breathe. At all. There was so much dust. I wouldn’t be able to clean any of it either, due to the knowledge it would be just as filthy the next day they were there. I couldn’t bear being in the kitchen either, so the washing up just piled up. I couldn’t really cook properly. I had the great luxury of being allowed to work in office space owned by University of Bath Student Union, but still, it wasn’t my own space. All of these things were stressful and I found myself tilting towards burnout yet again. I ate too much and couldn’t exercise enough.

I was supposed to have another meeting about giving a talk at an event for English for Academic Purposes-teachers. I had done what I was asked, which was to write a blurb about the access barriers neurodivergent students (and staff) face on EAP courses. Instead of taking my concerns seriously, the people there plastered ‘citation needed’ on every one of my claims. I had a meeting with the representatives who had responded to my points of concern, but they essentially said that, without academic research to back me up, I would simply not be believed. This was, obviously, aggravating. The reason there wasn’t any academic literature was because of a lack of access that already exists. If more neurodivergent people were able to succeed on these courses and even trained in the field, there would have already been more academic literature, so I wouldn’t have to do the talk I was supposed to do. It’s a Catch-22. But instead of them recognising that, I was treated like a quack. Nothing I said made them less hostile. When I called out the hostility, I was met with actual rage. I had to end the call, because the behaviour of especially one person was becoming frankly unacceptable. Yet, because he’s neurotypical and I’m not, I was the one who was blamed. Got to love neurochauvinism.

One of my mentees was not in a good way either, and I was worried I had done or said something that made them upset or retraumatised them. That knocked me out too. I hate it when people announce something, only to leave me hanging without context or substance. My brain goes into guilt-mode and I believe that I’m finally found out as a relentless piece of shit. Being perceived as harmful to others is a massive trigger point. I even thought about quitting the mentoring.

In the meantime, my partner’s work was concerned about his spiking anxiety, which didn’t make things better for either of us. He was developing even worse sleep than usual, which made his anxiety spike yet further, as it did mine. They gave him some much-needed time off. However, he’s on a zero-hours contract. This is the norm in the UK, since there is no legal expectation for businesses to provide sufficient hours. Plus, the hospitality industry is really feeling the pinch of yet another financially difficult year for most people. He had time off, so, obviously, I was getting worried about money. This didn’t help either of our anxiety. I was even more burned out, but couldn’t stop.

I did a talk for GP trainees at a Dutch university, too. It was supposed to have happened on the 22nd of March. On the 21st of last month, I got an email saying it was actually on the 22nd of February – I was to understand I was expected to speak on the next day. This was my first training I’d give in Dutch and though I’d only had a few hours to prepare. I thought I did pretty well. They didn’t agree. Apparently, the Core Capabilities Framework and the neurodiversity paradigm did not ‘add to their image of autism,’ though they did appreciate my ‘honesty’ and ‘personal stories,’ showing how I was impacted by being autistic. I wouldn’t be booked back.

The last week of February is always tough for me, since my father’s body was found on the 25th. On that day this year, I felt brutally, brutally exhausted by everything that life was insisting to throw at me. I hadn’t slept properly (my partner’s anxiety about work meant he hadn’t slept by 2 am), so I walked him to work, expecting the worst. That didn’t happen, because he’s actually excellent.

But I did feel shit about myself. I’m 35. When my father was 35, he didn’t have a high school diploma. What he did have was a marriage, a child and another on the way, he’d just bought a house and made enough money so his wife didn’t have to. I have done so much more with my life than he had, yet I was still fucking about. I vented to someone from a helpline that has actually been relatively ok with autism stuff. They usually aren’t, so it’s fantastic that these people are. But they obviously didn’t have any solutions to the way I was feeling, since so much of it is not under my control.

That’s always a problem with me. I’m very good at giving advice, other people come to me for it. I also follow my own advice, making sure that if there’s a thing I can do, I’ll go out and do it. The things I get upset by are always about ‘not’ being in control. Buddha or some prat like that ‘accept the things you cannot change,’ which is great for him, the nepo-baby that he was (too soon? 4000 years too soon to call Prince Gautama a nepo-baby?). I work in a field that’s all about pushing against huge societal obstacles, put into people’s way by late-capitalism. If there’s anything I can do to make my own life slightly less shit, I will have thought of it already. So if I ask anyone for advice, 99.9% of the time, I’m told ‘I’m sorry, I wish I could help.’ This, of course, does nothing meaningful at all. It makes me feel even more alone, whether that person intends to make me feel that way or not.

Then, last week, I found out that my bicycle, that my mother had sent over from Holland in early 2020 was not going to be able to be fixed. I actually cried in the bike shop.

REVENGE

Still. It’s not all bad news. For starters, my partner is doing great at work and at his course. He’s making some life changes I can’t talk about here, but I will in Feeling Fast and Slow, so look out for that.

I don’t think there’s any feeling more satisfying in my line of work than seeing the huge societal obstacles we face and just avoiding them, sometimes by building a brand new system or set of concepts, sometimes by sheer force of will, sometimes by being cleverer than them at playing the game.

First, the bike problem. On Thursday last week, I was told that the bike was unfixable and there wasn’t anything that could be done about it, this side of the North Sea. But when I went to the third of three bike shops, the one I’d spent hundreds of pounds trying to get it to work over the past year; they said: “Have you heard of the Council Bike Loan scheme?” The whut? “Yeah, we’ve got a bike here that’s your height (I’m 6’4″) and this one will work for you.” I now am borrowing a council bike. It’s an eBike and I’ve already used it to travel to Bath Spa Uni campus. I love it a lot. I think we can be friends. Since there are nearly 10.000 miles on it, I might even stand a chance of buying it, we’ll see.

The Theatre Research online/offline event didn’t go as amazingly as I wanted, but I got to spend time with some wonderful people. I will remain in contact with Valerie, who organises it. She was, frankly, a hero for dealing with me being as flappy as I was. We’re going to re-record the talk and make something we can both be proud of. One of my slides during the training said that though the training was intended for neurotypicals, that if any neurodivergent practitioners were watching, get in touch, let’s start the revolution. As a consequence, an email thread, then a Zoom call, called, fittingly, The Revolution, was started up. We’ve met twice now. We’re building theatre training systems for neurodivergent students. Some of us are planning to take some of the ideas we’re sharing into academia, designing theatre practice that is inclusive, validating and mindful of exactly how we are excluded.

Then the English for Academic Purposes people? Well, I managed to get in touch with one of my former supervisors, formerly of UCA and tell her about my experience. Her response: well, if they want academic papers, academic papers is what they’re gonna get. So, er, we’re writing one. I’m not going to start before September. One of my mentees might also be involved, if the timings work out. That’ll be an actual academic publication. Hoo boy. But if it’s the way to start a revolution, then we’ll just have to do it. It’s exciting and terrifying all at the same time.

Despite this one student choosing not to continue working with me, that was not due to anything I’d said or done (I checked, it genuinely wasn’t!). Instead with Bath Spa mentees, I’m organising an Autistic Pride event in late April 2023. I know, it’s April, but any later or earlier would have been undoable due to exams, dissertations and, well, being able to breathe. The AutWell group I’m running is going from strength to strength as well. Myself and my friend Joe from the Disability service (I hope I can call him that) are thinking of writing up the results of regular surveys as another academic paper. The attendance has not dipped below double figures since early January.

Then the big one. In the past, I’d been worried about writing therapeutic materials or design systems for autistic adults, without myself first being ‘recovered’, whatever the hell that means. Instead, I needed to have already had some form of therapeutic support, in order to help others. That’s valid in nearly all contexts and I stand by that. However, it’s all good to have a positive attitude to finding mental health support and an open mind with an open wallet and all that. However, I need to realise that there is only so much others can do within a system that doesn’t include neurodivergent people with CPTSD. The way we present is not normative, even within the literature of PTSD. That’s why I’m going to design a therapeutic system, with help from neurodivergent councillors and clinicians, with myself as the guinea pig. There’s no ethical way to do it otherwise. The only unethical thing to do would be to do nothing, since if I’m not doing it, who will? I’ve spoken to SurvivorsUK and they’ve told me they’ll do their best to connect me with neurodivergent clinicians and counsellors.

Money, yes, that’s still a concern. It always will be. I’ve just bought a chromebook for my partner, since his computer is properly dead now, unfortunately. But he’s got a job interview coming up soon for his first post-CELTA job. This will make him enough money that I can take off June, July and August to finish both books. It’s vital that I have the brainspace to actually do that. Having time is just as vital as having money and a room of one’s own if one is to write. If we somehow get evicted (unlikely but it is 21st century Britain we’re talking about here), I’d have to commute in from Oxford once a week for a while. But we’d be able to make it work. 30 years ago, we would have been able to buy something already, no questions asked, with plenty left over by the end of the month. That’s part of living in Britain under the Conservative Party – hopefully, though, not for long. The best revenge is always revolution.

What about the Dutch? The best advice I’ve had as yet is to never work in Dutch again. “Why are the Dutch so rude?” was my favourite response thus far. I don’t want it to end this way, though. So I’m committed to moving the paradigm towards one that’s mind of neurodivergent people and the specific sociological obstacles we face. If anyone has some ideas, I’m happy to get something off the ground.

I’m actually feeling like my life is on its way out of the doldrums. Really, revenge comes in many forms. It doesn’t have to look like Uma Thurman slicing off Lucy Liu’s hairline – as awesome as that is. It can be more subtle. There are always ways out and ways through. Please accompany me on that road. See you on the 17th!

Love to all.

xxx

Jorik