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

The Self-injurious Stims that I Love

CW: Self-injurious stims involving skin, hair, and knives

My self-injurious stims:

  • Trichtillomania – hair-pulling
  • Dermatillomania – skin-picking, particularly but not exclusively the scalp
  • Shaving the skin off my hands with pocket knives

My scalp takes the brunt of my stimming. I pull my hair and dig bloody furrows with my fingernails. Periods of my life were marked by sores on my forehead where the furrows trespassed beyond the hairline. Those healed, but the bald patches are permanent.

My hands bear multiple nicks from exfoliating with knives. There are raw, pink patches where I’ve shaved close to quickened flesh. While those areas heal I tend to others with my collection of pocket knives — so many different blade shapes and grinds with which to peel strips of skin.

These stims have been lifelong companions. They give me great comfort despite the bloody scalp, hands, and fingernails. There have been periods of my life where I and others tried to stymie them, but no longer.

I love scratching my head. Love, love, love. The feel from both head and hand is satisfying, comforting, and necessary. Life is more bearable with the pressure of fingernail on scalp. Life is better when I can scratch, pick, peel, and pull.

Instead of suppressing these stims as I occasionally and unsuccessfully tried over the first four decades of life, I seek a balance that can be covered with a cap.

I buy beanie hats that:

  • cover the sores on my head
  • provide access to my scalp while wearing the hat
  • cover and squeeze my ears for sensory management

I like wearing beanies as sensory management, but they get in the way of scratching. I’ve taken to wearing beanies that are either thin enough or have loose enough stitching to allow my fingernails to gain purchase in my scalp. I can stim in my favorite way while still having my ears covered and my sores obscured from public. I’ll also use slouchy beanies that allow me to get my hand up under the hat while it’s still on, although those don’t provide as much ear pressure as I like. Someone make a stimmer’s beanie that accommodates fingernails while still providing ear pressure.

As for my knife-shaven hands, they don’t have sores like my scalp, so they’re not as anti-social. Regardless, I welcome the normalization of fist bumps and, even better, not touching each other at all.

My self-injurious stims are a great comfort. They’ve gotten me through so much. I no longer try to live without them. I wish all the people who tried to suppress them as a kid had just given me a beanie, let me wear it at school, and let me scratch, scratch, scratch. That would have made the tidal immensity of fear and stress I constantly felt more bearable.

The Sensory Hell of Showering

I really hate showering.

It’s such a chaotic thing to find yourself in.

Source: LIVE WITH AURORA: FOR THE METAL PEOPLE – YouTube

Aurora gets it. Showering is overwhelming, especially the transitions. It can be sensory hell.

Sensory Hell is the opposite of something being stimmy. It is utterly and totally unbearable.

Maybe you’re thinking of the classic scenario of the autistic person melting down in a busy grocery store, and it’s true that grocery stores are often considered tools of the devil by autistic people. But anything can be a sensory hell.

Source: 7 Cool Aspects of Autistic Culture | The Aspergian | A Neurodivergent Collective

I need to stim at the thought of showering.

https://twitter.com/search?q=sensory%20hell%20shower