Actually, it’s not that new. I’ve been working on it since mid-August and I thought I had to get it finished by the end of this month. Happily, since I was getting a bit burnt out on the project by the pressure, I have found out I have until 31st December to complete the project and submit the report.
I should probably explain what I’m going on about. I may have mentioned that in June 2020 I started a job, supported employment, with The Faraway CIC as a research assistant. I have done a couple of different projects with them, and I manage about 5 hours a week. It’s been good for me, so long as I keep an eye on my energy levels. I go to a couple of meetings a week, make forms for the CIC and analyse feedback and data.
I help out at the allotment too. If you go to our website you’ll see me on the front page, first day we spent at the allotment clearing ground. I’m the giant in a white shirt and long black shorts, second from the left.
I actually quite enjoy playing with data and writing about what I’ve found. I did a survey and report on employment among Autistic adults in North East Lincolnshire which I presented at an event in December 2020. I had been pottering along doing my usual stuff for more than a year when a new project came up. I’m now managing a whole seven hours a week, which is about my maximum, although if I push it I can get to ten hours a week, but not for two weeks in a row. Collapsing is usually the result if I go for too long working at that rate.
Hyperfocus will do that. It is amazing, being in the flow, getting so much done, but then I’m utterly drained for days after.
Anyway.
About a year ago, our then project manager found out about my history enthusiasm and my interest in neurodiversity. He had been looking at funding sources and the Heritage Lottery Fund happened to come up. The manager made contact through a forth sector support organisation and proposed a history of autism project. I found out about it after the initial discussions and made a plan for a project that would probably take me about six months to do. My manager put together an initial funding bid and the Heritage Fund contact suggested a larger project – a history of neurodiversity.
Now, I have spent 6 months working on it and I still have a lot to do, because neurodiversity covers every possible human brain. This being the case, I’ve had to narrow things down a bit. I have to provide a display that can be taken to schools, workplaces, libraries and public spaces, as well as give talks, print flyers etc., and, in news to me, learn about making videos, podcasts and learn about oral history interviewing.
I’m writing a booklet about the history of neurodivergent people in a generalised sort of way, with examples of the diagnostic history of autism, ADHD and epilepsy. It’s essentially a sampler for a book I intend to write based on the research I’ve already done. At some point. The booklet will accompany a set of display rollers as a static display or for talks, and I’m working on scripts for videos.
The videos will be on our YouTube channel and imbedded on our website. I also hope to be able to share the videos at events as part of the displays. I have never been responsible for videos before, or podcasts. I have no idea what I’m doing. Luckily, one of my colleagues is an excellent film maker, and we’re going to learn how to make podcasts. We tried recording the first episode a few weeks ago but the audio wasn’t very good so we’re going to have to try again. I had a script, which was about twenty minutes long. I also managed to extemporise on the subject for 54 minutes. I was thinking that we could do the videos following the script, with pictures, presentations and green-screen stuff, while my off the cuff talking might make a basis for the podcasts? What do you think?
I suppose I should tell you what the videos/podcasts will be about?
- Neurodiversity – the origins of the term, what neurodivergent means, where it comes from, and an analogy about trees that I rather like.
- Neurodiversity in the ancient and medieval worlds, as well as a couple of hypothesises about the origins of Autism and ADHD in prehistoric humans that I want to explore.
- The changing understanding of neurodivergent people with the Enlightenment until the nineteenth century
- The twentieth century
- The twenty-first century and the future
Numbers two and three might be together as one episode, then four and five, but I’d like to do them as separate episodes because there’s so much to say about the subject. I have a stack of books and papers I’ve been reading and extracting information from, and there’s more to do.
As to the oral history interviewing, the Oral History Society runs a two-day course by Zoom which I need to get on. I think that would actually be really interesting and I’d like to interview some of our clients to get a record of their lives as undiagnosed autistic people, or those who were diagnosed in difficult circumstances so that we have a record of the experiences of neurodivergent people. So many people haven’t had their voices heard because the focus of most recording is either medical research or a few personal narratives that have been published.
It’s a lot of work, a lot of research, and there’s a mountain of horrible things to read. People write some terrible things about neurodivergent people, mostly about how we’re not really human for *reasons*.
I’m looking at the various places I can take the display and where I can do talks; I’m hoping the local W.I. and other organisations will let me come to visit them. I’m going to have a permanent display in the building we’re moving into later in the year. I hope to order enough copies of the booklet that we can give them out to all the staff and visitors to the Adult Autism Service, as well as to anyone who goes to talks or visits the displays.
So, a lot of my time and energy is going into this project, as well as another project that comes under my normal duties. I have had to reduce my blog tour commitments to two a month, although next month there will be three because one of them is a children’s book and they don’t take more than a couple of hours to read. If I’m not around a lot, it’s because I’m either working or exhausted.
For those who are asking (not that it’s anyone else’s damned business):
How am I surviving on less than 40 hours wages a month?
Well, I’m still on ESA and PIP, because permitted work and supported employment is a thing under the rules for people on benefits. It’s meant to help people who are sick or disabled get back into paid employment and eventually off benefits. Unfortunately, when you’re limited by energy levels and are unlikely to ever be able to work full-time, it’s a life-line. I can work a little, but my main income is from state benefits for sick and disabled people. The DWP are aware that I’m working a whole 5 – 10 hours a week, who I’m working for and when I started. It’s all above board, we made certain of that when I started at the CIC.
I don’t like being reliant on the state, given the precarity of the benefit’s system. As the last twelve years have shown, the government can cut benefits whenever they want and blame disabled people for their own poverty, and most people will let them. The Tories want us dead, and they’ve convinced people the 2008 crash and Austerity is the fault of the sick, disabled and poor, rather than weak oversight of the financial system, complete lack of taxation of major corporations and the selfish disregard of the wealthy for the rest of the world. When someone is standing on your face, it doesn’t matter if they’re doing so accidentally in the course of other actions, or if they’re doing it deliberately. They’re still suffocating you.
But that’s another conversation. I should probably write a review of Crippled, by Frances Ryan which discusses this subject.
Everything Is Better With Dragons 