I'm newly and invisibly disabled. I'm still learning so much about my internalised ableism, and the ableist world I inhabit here and now. But what's been troubling me most recently is the overwhelmingly ableist visions of the future, especially among progressive communities.
I've had a couple of personal experiences which affected me deeply.
I went to continental Europe for the first time since February 2020 last week. With my illness and disability following the first wave of Covid, travel has become a lot harder for me, and I'd focused on visiting family in the US and seeing friends on trips much closer to home.
A work trip compelled me to go to the Netherlands, where I also got the chance to catch up with friends. From the moment I hit the Eurostar terminal, jam-packed full of loud, squirmy, able-bodied travellers at 7am, I started to get the feels about going “to Europe”.
Last summer, in my small back garden in Nottingham, a smallish city in the middle of England, I found myself simultaneously reading about two rebellions – the outbreak of luddism in this city in 1811, and the Uprising of the Malês, in Bahia about 25 years later.
I'd been made obsolete by Covid, after two years of struggling with pain and crushing fatigue, I stopped working. I am unsure why these two rebellions became the object of my slow, convalescent focus.
So I attended my first work(-adjacent) event of any description since getting sick with Covid in 2020 and not recovering. I felt a bit like an academia-crasher, as I'd spotted “Ecologies of Labour” at Nottingham Trent (around the corner) and I thought it sounded really engaging. As it's adjacent to my field of work, I felt justified in attending.
But when I arrived I realised it was more like a quite intimate workshop, not in a lecture hall. (I think I hadn't understood the academic codes correctly.) I was a little intimidated, as I already feel very conspicuous being the only one with a mask. But I stuck with it.
Well to be honest living is hard. My eight months dedicated to my recovery last year blew by. I read a lot. I took my time with everything. I took lots of baths. I sat in the back garden in the sunshine. I spent hours in an oxygen chamber at two atmospheres. But I didn't write like I'd hoped to.
At a certain point, I even felt myself lose interest in microposting. I was totally quiet until only a couple of months ago. I felt the need to be silent.
It's my “Covidversary” and I'm focusing on Fitz, the pugalier (pug x cavalier) cavalier cross we just rehomed, who in just 10 days has been such a boost. My body and my brain are basking in the new love we have for each other. It's been a tough couple of years, but I'm so lucky to have supportive family and a partner who have been so devoted to my wellbeing. They have never questioned the reality of my illness, and my new disability.
Three years ago today, it was a Friday afternoon and I was at the small wooden desk I bought after moving into my partner's place before lockdown. I had a strange headache I'd never had, one right behind my eyes. I tried to continue working, but after an hour or two, I was in bed.
So we participated in the National Grid's “Savings Sessions” last night via our energy supplier Octopus Energy.
We sat with one dimmed LED bulb and candle light for an hour in an effort to use less energy during a peak period, 5-6pm. (This is the period when typically, in winter, the government has to fire up dirty sources of energy, and pay horrible companies hundreds of millions of pounds to keep the lights on.)
We did so all the while believing that our government and our country has this all wrong.
When I was younger, I didn't understand my swings between a tail-wagging extrovert and a very solitary person who wanted to flee all social interaction.
I think I thought for a long time that the person fleeing was either depressed-me or rebellious-me. Me working through something.
Then I heard this term “ambivert” – filling in the space between Jung's extrovert-introvert binary.
It may seem absurd but when I finally returned to California to see my parents in January this year, after two years of not seeing them due to the pandemic and being disabled by it, one of the things that struck me most about arriving in their house was the lack of ice in the freezer.
I grew up in the Midwest of the US, where access to unlimited ice is some strange human right. That along with unlimited ketchup, sugar packets, napkins. Doesn’t really matter what season it is. If the drink isn’t hot, it comes smothered in ice.
As a child, I learned that people in other parts of the world have a different relationship to ice.
I started blogging in 2001 without a regular internet connection. I used to write blog posts on an old laptop, save to floppy and take to the internet. Ever since then I have always loved blogs, the smallness and intimacy of them. The “few to few”.
Social media destroyed the collective blogging brain and starting my own organisation/campaign meant the end of the road for mine too.
I'm coming back to it.