Political persuasions
Appalling medical practices, American politics and a little bit of democracy are contained in this latest progress update...
Don’t worry, things are meant to look different around here. With Elon Musk deciding to shut down Revue - a platform which actually did a pretty good job at rivalling Substack as an e-newsletter provider - I’ve decided to set up my own ‘stack’ or whatever they call it over here. So hi. Hello.
It feels like a good time for reintroductions (before I even posted anything on here people were subscribing, so thank you), so I’m Liam O’Dell, a Deaf and disabled freelance journalist with a specialism in reporting on disability, accessibility, and social media. I’m writing my first non-fiction book, and I could do with some collective peer pressure to get me over the finishing line in these final two months. So this is The Book Accountability Project, where you can prod me to hit the 60,000 word count by 31 March and I can reach out to you with things you might be able to help me with.
Sometimes, you get book reviews…
Just kidding. My book blogging days where I would review whatever I had on my bookshelf are long gone, but as I dive into a couple of books for research purposes (NeuroTribes by Steve Silberman and Unmasking Autism by Devon Price are two books I plan to make notes on next), I couldn’t help but have a few thoughts on my latest read: Control by Dr Adam Rutherford.
The book’s longer title details a look at the “dark history and troubling present” of eugenics, a bleak subject I consider necessary to explore in depth if we are to talk about restoring trust in autism research. I promised an investigation into the work which needs to be done to rebuild relations with autistic people and academics, and I intend for it to be warts and all.
I like to think many people are aware of eugenics’ close ties with ableism, yet this particular area of the ideology isn’t explored in Control as much as it could - or even, should - do within its very short number of pages. There are several good opportunities for Dr Rutherford to emphasise that eugenics doesn’t just manifest in prejudices such as racism, white supremacy and sexism, but ableism, too. I’m fairly certain the first proper explicit mention of that comes in the final 10 to 20 pages or so, which is baffling.
Another mind-boggling contradiction is to brand former US president Donald Trump as “moronic”, and then a few pages later explain how terms such as these were used to sterilise and abuse the rights of disabled people. It’s a shocking lack of awareness which runs throughout the book.
Dr Rutherford also defends IQ tests, and while I appreciate schizophrenics might welcome more genetic research into their debilitating condition, Control only examines that and Down’s Syndrome in detail. It ultimately fails to acknowledge other disabled communities who would much rather have little to no genetic research carried out on their disability/disabilities altogether.
Thankfully, I was still able to deploy a fair amount of orange post-it notes and mark some quotes to use in my own book, but it’s so frustrating that an otherwise accessible book on this particular science comes with such a huge, disappointing oversight.
Perseverance
So far, things appear to be going to plan. I said I wanted to hit 10,000 words a month to take me to 60K by February, in order to leave March for editing, and December saw me end 2022 on 41,229 words, to be exact. I still very much hope to hit 50K by the end of January, and I had to push my way through a very grim, horrifying subject matter in order to do that.
This wasn’t helped by a chesty cough on Christmas Day (how festive) which didn’t shift for a good couple of weeks, poor mental health, and grief at the start of this year, all of which meant the momentum which has served me well thus far started to stagnate. Control, the book I needed to read in order to fully complete the chapter on eugenics, autism cures and ‘interventions’, was lying unread for a considerable period of time. My Excel spreadsheet complete with data on my book progress has several rows of zeros between 6th and 15th January where I was compiling paragraphs in my Notes app and working through my reading.
Perhaps I was unenthused about having to write about multiple sickening moments from autism research’s history: the abhorrent practice that is Applied Behavioural Analysis (ABA); the warped mindset of its creator, Ivar Lovaas; and the horrifying application of electric shocks on autistic people at the Judge Rotenberg Center in Massachusetts. The evidence I’ve had to read and watch has been incomprehensibly distressing.
Thankfully, it’s done, and my current January total stands at 48,030 words - just over 80%, for any stats fans out there.
A political plea to Americans
One of the three remaining chapters still to be written is about politicians, because after all, it is research which often fuels policy decisions taken by those in elected positions in Western democracy. Here in the UK, we had the Autism Act, and I’m already making enquiries as to politicians on this side of the pond whom I can quiz about their reliance on academia.
In the US? Not so much. It’s to my shame that I’m not quite as tuned in to the world of American politics and its inner workings as I want or need to be. I say this as someone who went around in circles last week trying to find a particular piece of legislation on the congress.gov website.
And so I must ask my US readers for a favour. If you happen to know of a congressional representative who’s been particularly vocal on the rights of autistic people, I’d love to chat to them. You can respond to this email with your suggestions, or drop me a message on Instagram or Twitter: @LiamODellUK.
Don’t know anyone? That’s fine too. But please consider sharing this newsletter via the button above, as someone in your network might.
A side project
Perhaps it’s naïve - or, fittingly, foolish - of me to assume that when 1 April comes around, my workload will be alleviated somewhat, as I no longer have to blitz towards a high word count. Instead, I suspect we’ll be in the territory of fact-checking, edits and other logistical processes in order to get it ready to hit the shelves at some point.
Nevertheless, as I begin to get to grips with Substack, I realise the very issue which brought my previous newsletter - The All-Inclusive Newsletter - to a close can be resolved over here. I can now set up a paid newsletter dedicated to accessibility, social media and disability news, exploring the moments when these intersect and writing mini-essays on the latest trending topics in these areas.
Some have already expressed an interest in subscribing to a newsletter which consolidates disability news into one place. I’m still considering prices (maybe something around the £5/mo mark, but this is yet to be set in stone), though I’m thinking something weekly/biweekly for paid subscribers, and a monthly summary for free subscribers.
However, thanks to Substack’s polling feature, I can get a more definitive answer on what people think in the below poll.
Whatever happens after the manuscript deadline of 31 March, then, I should have another project to tide me over should newsletter updates from The Book Accountability Project be a little more infrequent once the final draft is in the hands of my publishers. I’m excited to get to work on yet another content creation platform.
Though let’s not get ahead of ourselves too much. I still have two months to go, and I’m now praying a good number of people and organisations respond to their emails quickly - to agree to an interview, for me to get the answers I need. Onwards.