Tag: disability

The Neurodivergent Experience in Josephmooon’s “So Far So Good”

Our own Ronan is releasing an album. Ronan is lyricist for Josephmooon. You can read the story of their distributed collaboration on their blog:

These songs resonate with my autistic, bipolar, and disabled life. I’m super excited to add them to my favorite playlist, Chronic Neurodivergent Depressed Queer Punk: Punk Rock, the Social Model of Disability, and the Dream of the Accepting Community, where they will become part of my everyday coping.

The album “So Far So Good” will be available on streaming platforms on Oct 1. Preview and pre-order on iTunes.

Listen now, and then read ‘The Neurodivergent Experience in Josephmooon’s “So Far So Good”’ over at Stimpunks for my interpretation of these songs and how they resonate with my life as a neurodivergent and physically disabled person. I share lyrics from each song and relate them to my own, and the broader, neurodivergent experience using selected quotes from community writing.

My Electric Wheelchair

Progressive neuromuscular disease finally put me in a power wheelchair, and I’m loving it. I should have gotten one years ago, but power wheelchairs are two things common to the disabled experience: expensive and logistically cumbersome.

I picked a Porto Mobility Ranger Quattro XL as my chair. That’s US$3000 right there. And then there are the accessories. I’ve turned the chair into a mobile coping platform and life-support system. Some highlights:

  • 300w motors x 2
  • 10Ah motor batteries x 2
  • 3500 lumen headlights x 2
  • tail/brake lights x 2
  • stereo speakers
  • climate control
  • toolkit
  • toiletry kit
  • tech kit
  • full mobile office setup
  • change of clothes
  • the 10 Cs of survivability
  • quick-detach first aid kit including Stop the Bleed
  • quick-detach go bag
  • integrated charging harness and battery for all devices

I’m not sure what all of that adds up to price-wise, but let’s call this a 5 thousand dollar rig. That’s a chunk of change. The crip tax is real.

The chair plus batteries weigh a little over 60 pounds. That’s much lighter than many power chairs, but we still need a portable wheelchair lift (also expensive) to get it in our minivan. The logistics of that aren’t fun, but it’s doable.

Aside from the expense and the logistics of travel, this chair is all upside. I love to pace. At least, I used to when I could walk. Back-and-forth, around-and-around, I’d pace my well-worn paths, thinking on the move. I haven’t been able to think on the move for years. My previous manual wheelchair required someone to push me since I can’t push it myself. I couldn’t go for a stim “walk” whenever I wanted. An electric wheelchair allows me to think on the move again. It allows me to pace and loop and drive patterns around our yard while working through the day’s thoughts and worries.

This chair is life-changing. Behold my precious:

Power wheelchair with rainbow umbrella and backpack
Power wheelchair with rainbow umbrella and backpack
Power wheelchair with rainbow umbrella and backpack
Power wheelchair with rainbow umbrella and backpack
Power wheelchair with rainbow umbrella and backpack
Power wheelchair with rainbow umbrella and backpack
Fender of wheelchair with "Disabled AF" and "Wheelchairs Mean Freedom" stickers
Fender of wheelchair with “Disabled AF” and “Wheelchairs Mean Freedom” stickers
Wheelchair fender with "Disability is Political" and "Ambulatory Wheelchair Users Exist" stickers
Wheelchair fender with “Disability is Political” and “Ambulatory Wheelchair Users Exist” stickers
Power wheelchair with rainbow umbrella and backpack
Power wheelchair with rainbow umbrella and backpack
Power wheelchair with rainbow umbrella and backpack. Sticker on frame reads, "The Future Is Accessible".
Power wheelchair with rainbow umbrella and backpack. Sticker on frame reads, “The Future Is Accessible”.
Power wheelchair with rainbow umbrella and backpack
Power wheelchair with rainbow umbrella and backpack
Seat of wheelchair
Seat of wheelchair
Tray under wheelchair seat with "Ambulatory Wheelchair Users Exist" and disabled definition stickers
Tray under wheelchair seat with “Ambulatory Wheelchair Users Exist” and disabled definition stickers
Rainbow wheelchair umbrella with two clip on fans
Rainbow wheelchair umbrella with two clip on fans

Back to Normal, Back to Inaccessible

Kirsten Imani Kasai, 50, a novelist in San Diego and self-described introvert, describes how she found comfort and safety in the relative quietude of the past year — and fears the return of a noisier, more-demanding world. Emily Ladau, 29, a disability rights activist in Long Island, N.Y., says she worries that the shift back to in-person interactions will force her, once again, to navigate environments that weren’t designed for the physically disabled.

Source: Opinion | Reopening Anxiety? You’re Not Alone. – The New York Times

I’m an autistic, hyper-sensory wheelchair user. Loud noises and light touch can induce agonizing cramps strong enough to tear muscle, dislocate joints, and break bones. I prefer to stay at home where I am not overwhelmed by the logistics and stimulus of an inaccessible world.

During COVID lockdown, my favorite restaurants started curb side service. My doctors offered telemedicine. The various educators and healthcare workers who help us home school our neurodivergent kids offered Zoom sessions and noticed how well they responded to learning from the safety and accessibility of home.

More places became compatible with written communicators and the phone averse. I even made some progress with getting healthcare, education, and local businesses to respect communication preferences and improve digital accessibility.

And now, much of that is falling away.

We’ve been warning that the accommodations that suddenly became possible during a pandemic would go away and we’d be back to forced intimacy and the accommodations grind.

Source: Structural Ableism Doesn’t Stop at the Firewall – Ryan Boren

So thoroughly discouraging.

In the video, you will hear from some of these quieter voices. They explain that as much as they want the pandemic to end, it has also provided them with some relief from challenges, inequities and injuries that were all too common in their prepandemic lives.

Source: Opinion | Reopening Anxiety? You’re Not Alone. – The New York Times

I too felt that relief. As Kirsten Imani Kasai puts it in the video:

I felt safer. I felt safer.

“Autistic people have significant barriers to accessing safety.” Likewise physically disabled people. Lockdown bettered accessibility and neurological pluralism, and thus safety, in myriad ways that are now disappearing.