Painting of Jorik with tiger, in watercolour, by Jack Leto

Monday 3rd May 2021: Autistic at Times of Covid-19 – On Teeming

CW: discussions of violence, radicalisation, homophobia and extreme-rightwing ideology.

Hi everyone,

Phew! It’s been three weeks! Far too long, I know. My partner had an operation two weeks ago and then I had the Covid vaccine Friday before last. I promise that this will be it for any unexpected medical reasons for the blog not to go ahead. At least I hope so, until the next Covid vaccine that is. First we have some short news topics, then today’s actual blog.

Oxford University and Said Business School

So? How have you been? Over the past two weeks I did a very well-received training at Said Business School and Oxford University. It was well-attended and I’m pleased to hear about further plans to develop staff neurodiversity networks in both schools. More news when I’m allowed to share it.

Stonewall and #BanConversionTherapy

I finally managed to get in contact with Stonewall on their #banconversiontherapy work with regard to queer autistics. I am really excited that there are autistics and NDs within the organisation who see the clear limitations of the current campaign and its capacity to be abused.

Mark Rober’s US campaign

The story with Mark Rober and the Next for Autism “event” has come to an end. I’m not going to add more to this situation since I don’t know enough about it. I am sharing these voices since they are vital and I wouldn’t be telling you anything new.
https://www.change.org/p/mark-rober-change-mark-rober-s-eugenics-campaign https://autisticscienceperson.com/2021/04/29/an-open-letter-to-the-autistic-community-regarding-color-the-spectrum/
https://autistictic.com/2021/05/02/follow-up-re-color-the-spectrum-next-for-autism

Plagiarism

About the point of repeating other people’s works: plagiarism, particularly online plagiarism, is a huge problem and many autistics are rightfully hurt that white organisations and advocates feel free to plagiarise the work of autistics of colour, AFAB autistics and autistic queers of all stripes. I will do my best to always reference my sources and not make unsubstantiated claims. I hope you, too, will continue to hold me to account.

Dutchness

My Dutch friend got in touch about my blog with a few notes on that particular entry. When we’ve managed to catch up, I’ll amend that entry with annotations.

On Storytelling

This week, I realised I never told you the real reason I became an activist. It’s because of a book. My own book. When, in 2016, my grandmother passed away, the farm where she had lived until she died had to be sold. With it, the memories I cherished of visiting, living there and my grandmother’s stories of her life as a farmer’s maid, working for a living since the age of 12, all collated into a single idea: what would it have been like if she’s been more like me? Would she have been ok, being queer and autistic? I started writing in late 2016.

By summer 2017, I had enough to show. Sara, Frank and van der Lubbe had all taken shape in my mind and I became a regular at the Oxford Writer’s Circle for a few months. It had the kind of response I had never had before, for any work I’d ever done. People were hugely interested and I made fast friends there, all of them autistic. I even met my now partner at that very first reading. My book brought us together. He’d never read anything like it. It was as if his own life was talking back to him. The next week, I asked him to read the first part where Frank appears. I have all those sessions recorded. When writing, I still sometimes listened to them, to get the voices right.

The book was then still called ‘The Ground Beneath Our Feet’, but, since that always reminded me of a Vampire Weekend song, I changed it to ‘Teeming’ later that year. I knew I had a novel, that it would be set in Holland in the 1930s and that Frank and Sara’s 3rd person perspective in the expansive open land should be offset to Marinus van der Lubbe’s 1st person, a prisoner in a world far too big for him.

When I started teaching at EF Oxford, I saw that there was a local organisation called Autism Oxford that ran a conference on autism. Tony Attwood, an authority on autism, spoke there. I signed up and I paid the entry fee. I’d recently read Steve Silberman’s Neurotribes and it had made a huge difference to my research for Teeming, as well as a far greater understanding of myself. I felt less alone. When I got to the Autism Oxford conference, I made a myriad of notes and asked a few questions to Tony Attwood. There I was spotted by the head of autism at Oxford Health NHS Foundation Trust. She ended up contacting me and, later, hiring me as an autistic consultant at Oxford Health. I ended up running the autism experience group throughout 2019.

Reading more about autistic people’s lives and meeting autistics made me feel less alone. But writing did so too. When I was growing up, I never saw autistic people represented in media, beyond Rain Man. To be autistic was to be a punchline to a joke. I never read a book written by an autistic person, I never saw our minds reflected in an honest way. I personally knew I couldn’t be autistic because autistic people didn’t have a rich inner life. My mind was often overwhelmed with how intense the world was, how beautiful, too. Teeming, at its core, is about the workings of three very different, queer, autistic minds. Our minds, the things that set us apart from the rest of the world, are far more beautiful places than stereotypes make them out to be. Teeming, in its practice, seeks to set that right. The book itself is autistic; from the layout to the flow and rhythm of the sentences, to the associative thinking patterns and use of metaphor to the jokes and Sara’s self-awareness of her own mess-ups. The point is to show autistic minds, with an autistic reader in mind, decades before Kanner and Asperger first published on autism. We’ve always been around. We were hiding in plain sight.

Frank and Sara are composite characters, combined from my autistic family, my blood relatives, my own life, stories I’ve heard, read and seen and just made straight up. Marinus van der Lubbe, however, did exist and lived from 1909 to 1934. He was murdered by fascist Germany in the first year of the Hitler dictatorship. He set fire to the Reichstag in 1933, which allowed the National Socialist Worker’s party to gain complete control of the German state and kill its opponents. I had read up on his short life and I came to the conclusion that he was probably autistic. I looked for a 1998 documentary by Dutch documentary film maker Joost Seelen called ‘Water en Vuur’ (water and fire) about Van der Lubbe’s life. It was not available anywhere online, so I emailed Seelen about buying a copy. He, without prompting, sent it straight to me for free. What a hero. He’s in the acknowledgements at the back of the book.

When I saw the film, it became blatantly obvious I had been right. His niece, by then in her eighties, spoke about her uncle. She talked about how he had certain rituals and odd behavioural patterns that she had always accepted – he was just like that. Just when he came round for one last visit before his final trip to Berlin, his niece spoke to him. Van der Lubbe seemed agitated, the flowers on the floor, flapping his hands, she said:
“daar stond ‘ie met z’n handen te wapperen dat deed ‘ie ook vaak – ik zei ‘Rinus waarom liggen die bloemen op de grond, zijn die voor moeder soms?En hij zei: ‘Jesus Mary and Joseph wat moet ik nou doen!'”
(“there he stood flapping his hands, he’d often do that, too. I said: ‘Rinus why are those flowers on the floor, are they for my mother?’ and he said: ‘Jesus Mary and Joseph what should I do now!'” sic. Van der Lubbe said this in English).

Van der Lubbe was autistic. Everything about him was. I’d recognised the posture and the empty stare in the video of his trial in Leipzig; I’ve looked like that. I booked a trip to Berlin to research his life and his final days.

In the summer of 2018, I heard from Penguin Random House that I’d been selected to go to the Write Now workshops. This was huge – I was one of 240 authors selected out of 2500 applicants. I was jumping up and down with joy. The workshops would take place a day after my return from Berlin.

Berlin was incredible. I stayed with two friends I’d met in Oxford when I still did stand-up comedy. They now lived there for Visa purposes. I could borrow a bicycle and cycled all along the city, getting to know its layout and trying to get a feel for the city van der Lubbe walked through in 1933. I went to museums, libraries and bookshops. The day before leaving, I went to Leipzig, to see his grave. The stone that was placed there was not over his remains. I put flowers on his stone and lay flowers between it and the grave itself. He’d been there since his brutal execution, just before his 24th birthday. Neither the nazis nor the DDR removed his grave, but it was unmarked until the 1990s and the reunification of Germany. Van der Lubbe’s stone will at some point be placed over his remains but I’m unsure whether that has taken place since.

Most scholarship on van der Lubbe has focused on the simple question: did he set fire to the Reichstag? How did he do it? Did he work alone or did he work together with others? I decided early on to take him at his word. If Rinus said that he worked alone, without the help of either Nazis or communists (he’d been a member of the communist party in the Netherlands and then, in a move typical of autistic activists still, expelled – by the time of the Reichstag fire, he had actually moved to a more anarcho-syndicalist position); then I believe him. Sure, the fascist element of German society took the opportunity with both hands. Sure, it was communists and social democrats who, with Jews, gay men and Roma, were the first targets of nazi razzias and attacks following the fire. Sure, van der Lubbe looked unwell during the trial and the trial was a total humiliation for Göring, who led the prosecution. In fact, the SS used van der Lubbe’s oddness to destroy the SA faction, calling him Ernst Röhm’s catamite; the boy lover of the openly gay fascist leader. He was very likely asexual aromantic – I got this from his own writing and other people’s descriptions of him. His arrest also occurred at the start of the T4 programme of eugenics against disabled people, which sterilised and then murdered thousands of autistics. Van der Lubbe is a part of history, trying to hold off a tidal wave with his bare hands and failing. His mind is what interests me and what features in the book.

The day after I returned from Berlin, I went to the Penguin Random House main office on the Strand, in London. The writing that I’d sent was appreciated and people loved what they saw. At least they’d said so when I asked. I was nervous and flappy. I asked for a quiet room to de-escalate before the first meeting, which I was given, even though the person I asked was a bit surprised by my question. I spoke to some staff, who said I was probably the first openly autistic writer to be selected for the workshops. I met many interesting people, including the head of the publishing house, who expressed genuine interest in trying to break into a market that has never seen itself represented (this was before Naoise Dolan, Dara McAnulty, Camilla Pang and Madeleine Ryan were published).

However, I soon got a message from the editor I’d spoken to about the book. I was not selected for the 12-person mentoring programme. That was fine, but the reasons given were pretty ableist and fundamentally misunderstood the purpose of the book. It was quite embarrassing and hugely demotivating, that even on a scheme for marginalised writing, I would be marginalised. Of course the editor didn’t think it was aimed at them, they were neurotypical! I was not going to write a book about three autistic minds in a way conducive to what neurotypicals would like us to be. I sent an email back, but all I got was a half-hearted statement about lack of clarity and an assurance that Penguin was committed to inclusion and diversity. The points I made, though, remained unaddressed. They couldn’t change the outcome, they said, as it was due to the editor’s own views.

It was a defeat. I felt incredibly demotivated to carry on writing for a good while. I was still teaching full-time and in September I started at Oxford Health. That took over my life and I didn’t write much until that Christmas. Throughout 2019, I used every spare moment working on the manuscript. Finishing it became so important that I feared keeling over before I managed to finish the book. I did so in November 2020, sending it off to a variety of literary agents at the end of last year and early this year. I have heard ‘no’ a few times, nothing at all most times and ‘not yet’ once. At Write Now, I met Julia Kingsford, a literary agent at The Good Literary Agency (TGLA). She was genuinely interested in my project and wanted to see a finished draft. I sent her what I had in 2018, she thought it needed more plot. I haven’t heard much from her since, though I did send the manuscript to Abi Fellows, also at TGLA. I was told about her by Lizzie Huxley-Jones, an incredible autistic author whose works is represented by Abi.

This week, I heard back from TGLA, saying that they have to say ‘no’ for the moment, but are looking forward to seeing edits to the manuscript and their door for submissions is always open. They don’t have the capacity to provide editorial advice, due to their small team size. It wasn’t a copy-paste response either. They gave feedback related to style and characterisation and the main issue they have with the book, though very broadly stated. Their criticism is about paragraph length, a topic I want to discuss with an editor – how do you represent associative autistic thinking in a way that is true to the flowing nature of our minds in clear, concise paragraphs? Where does one thought end and another begin? I have been in contact with some autistic publishing professionals and I hope to hear back from an editor I’ve been recommended. Some of these autistic professionals are interested in doing work at the Society of Authors around ableism against neurodivergent writing and authors, I’ve already stated my interest in working with them, when they want to.

For now, I’m planning to continue teaching, writing these blogs, being an activist and continuing to try and get published. The people who’ve read the full manuscript have adored it, but it’s big ask to read 104.000 words during a pandemic when 10.000 other issues demand your attention. I’ll just keep on keeping on.

I’m a storyteller. I tell stories that reach right into the heart. The truth, on its own, is not enough. Until it is translated into art or told as lived experience, we cannot understand a fact or a truth about the world. This is especially true for neurotypicals, giving them facts doesn’t penetrate ossified views of what human beings can be. It requires someone with lived experience. Time after time, I’ve seen people genuinely connect with evident reality only once I made it personal to me, including people who decide whether we live or die. Without stories, there is nothing.

Art is the same: to change truth into reality. That is what the humanities do; by employing fiction, they make truth real. I tell stories because that is the only way we can change society for the better. It won’t happen immediately, but the path to make beautiful art and effect social change are the same. Reactionary art is not often beautiful. It doesn’t have to be. Reactionary art or art that represents the status quo does not need to challenge our perceptions of reality, it just seeks to confirm them. Artlessness is allowed, even encouraged. Bad art is bad because it has bad intentions or outcomes, is made shoddily; usually all three. Good art is good because it is beautifully made and has good intentions and outcomes. However, art that is beautifully made and has bad intentions or outcomes; that’s the most dangerous of all.

Mark Haddon’s The Curious Incident of the Dog in the Night-time is dangerous art, because it has the capacity to change people’s minds for the worse; aligning autistic minds with a very narrow stereotype. I have heard stories about clinicians who have refused to diagnose autistic children because they were not Christopher Boone. No matter Haddon’s intentions, his refusal to work with autistics means that the outcomes are more likely to be dangerous. The same with Dear Evan Hansen. To make good art is to make something beautiful with the intention and capacity to effect good outcomes. Teeming seeks to do that, representing three very different autistic brains, their deep connection to the natural and social world, their stims, echoes and their horror at being caught inside a world they are unable to control.

It is possible that Teeming has a negative outcome in the world. But its fundamentals are sound and its approach deliberately inclusive. Truth alone doesn’t make good art, in fact it detracts from it. Your truth isn’t necessarily the truth. But truth, modified into fiction by craft and deep thought is the strongest form of resistance I can currently come up with. Especially if, like me, you’re bad with crowds. #BlackLivesMatter

I hope that you see that my work as a writer is at the centre of my practice as an activist. It is an act of rebellion to centre minoritised minds in a way that is neither facile nor dismissive. To understand our minds, the centres of our difference, as spaces of beauty – that is the goal of this book. Until I finally get time to write its two sequels.

Future blogs

Lastly, this. As a self-employed person who’s found that being meticulous is a strong point in my line of work, I’m going to give you a quick run-down of the next few weeks’ blogs.

DateTopic
10/05/2021 Covid-vaccines! Or: how to neurodiversify research.
17/05/2021Operations for Autistics and access to general medical care.
24/05/2021Got a job! How do I pass an interview?
31/05/2021What is ABA? #BanConversionTherapy
06/06/2021Autism and Learning disabilities.
13/06/2021Core Capabilities Framework and ACCEPT study
20/06/2021Autistic and PTSD
27/06/2021How to foster understanding on neurodiversity within your organisation
04/07/2021Holistic approach to workplace adjustments for neurodivergent colleagues
11/07/2021How to understand intentional and unintentional barriers for neurodivergent colleagues
18/07/2021The legal framework around neurodiversity in the workplace.
25/07/2021A new job! How am I getting on?
01/08/2021Attracting, recruiting and retaining neurodivergent talent
08/08/2021We’re all neurodiverse, but not all neurodivergent!
15/08/2021How to manage your neurodivergent staff when they are working remotely.
Even with this plan, things may come up that need immediate attention. As I’ll still be working full-time, I might not have the time to write these, but dammit I’ll do my best!

Thanks, see you next week!

Love,

Jorik

Categories ABA/ADHD/Education/Healthcare/Institutional Barriers/On Neurotypicals/Protesting/Uncategorized/Writing

Post Author: jorikmol

Professionally Autistic

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