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

This Chronic Bodymind: Separate, Isolate, Bolster, and Squeeze with Pregnancy Pillows and Body Pillows

I thought about calling this series “This Old Bodymind” to evoke “This Old House”, but I don’t want to reinforce the notion that you have to be old to be disabled. So, I’m trying on “This Chronic Bodymind”.

This first installment of “This Chronic Bodymind” is about an essential part of my coping system: pillows. I don’t know how I endured before assembling my trio of body pillow, pregnancy pillow, and head pillow.

Contents:

  • Separate, Isolate, Bolster, Squeeze
  • My Current Coping Trio
  • Body Pillows
  • Head Pillows
  • Pregnancy Pillows
  • Conclusion

Separate, Isolate, Bolster, Squeeze

I’m a side-sleeper with chronic pain and chronic muscle spasms who prefers fetal most of the time but also likes yearner. Some pillow rules-of-thumb I’ve developed in my quest for relief and sleep are:

  • Separate
  • Isolate
  • Bolster
  • Squeeze

It starts with the tuck. I tuck one arm of a U-shaped pregnancy pillow in along my back. I tuck the other arm in along my front. No matter which side of my body I’m currently sleeping on, I have a pillow arm tucked front and back. I’m pressure spooned both ways.

With the pregnancy pillow in a bolstering squeeze, I wrap my top arm and leg around a body pillow in a fetal hug that separates my knees and ankles and bolsters my top arm and leg. The top of the body pillow tucks below my chin, bolstering my head and separating it from my easily cramped and locked jaw. My down arm, when lying in yearner, is between the arm of the pregnancy pillow and the body pillow: separated, isolated, bolstered, and squeezed.

The pregnancy pillow has a built-in head pillow. On the downward slope of that pillow I put a thin (for a side-sleeper) standard-sized head pillow. My down arm, when lying in fetal, rests at a 45-ish degree angle on top of the pregnancy pillow and tucks beneath the head pillow. My down arm has to be propped at just the right angle to avoid pain. The total thickness of pregnancy pillow plus head pillow must be within the range my neck can tolerate, so the head pillow has to be somewhat thin while also providing enough loft to separate my jaw from my shoulder and down arm. By using adjustable loft and moldable head pillows and situating them a bit below the built-in head of the pregnancy pillow, I am able to dial in separated, isolated, bolstered, and squeezed relief.

When so ensconced, I come the closest I get to a reprieve from gravity. It’s wonderful. The gravitudinous mass of the earth never stops sucking at my bones, but the delta of relief afforded by my pillows as I sink into bed can nearly par the cool settling of morphine.

My Current Coping Trio

What pillows am I separating, isolating, bolstering, and squeezing with right now? What did I sleep with last night?

Body Pillows

The Snuggle-Pedic body pillow has the perfect fill for me. It’s a satisfying squeeze that isn’t too heavy or hard to bend and mold. Wirecutter recommends the Snuggle-Pedic for those who need more support and The Company Store body pillow for those who need less. The Company Store body pillow is very nice and easy to wrangle, but it was under-filled for my huggy bear needs.

Tuck’s review of best body pillows says this about the Snuggle-Pedic:

Side sleepers who use a body pillow often like to hug or snuggle with it. The Snuggle-Pedic Bamboo Body Pillow lends itself well to those sleepers, due to its highly moldable design.

Source: The Best Body Pillows – 2021 Reviews and Buyer’s Guide

If you’re a fetal hugger, the Snuggle-Pedic is satisfying. Our house has five Snuggle-Pedics so that I always have an accommodating squeeze nearby. I take one with me whenever we go on car trips, both to endure the car ride and to endure the hotel. I don’t travel by air for many reasons, but one of the biggest is that I can’t take a big, plush snuggly with me. Without my body pillow, life is pain.

Head Pillows

I’ve tried a lot of head pillows over the years, including several Wirecutter and Tuck recommendations. Now that I’m combining a head pillow with a pregnancy pillow, I go for head pillows that can be adjusted to just the right loft to complement the pregnancy pillow. Having two pillows stacked is not generally necessary or a good idea, but having a channel between the two pillows for my down arm is crucial to avoiding elbow, shoulder, and jaw pain. Adjustable pillows allow me to set the height of the pillow stack to a neck compatible position whole affording sufficient jaw support. Being out of range provokes pain in either.

Most pillows we’ve tried come in soft, medium, or firm densities, but the PlushComfort Ultimate includes all three options in one pillow: It offers three sealed, removable layers of fill to help you get the best fit for your body shape. Most of our testers (even some back- and side-sleepers, who generally prefer shredded foam) found a comfortable height and enjoyed the cushioned support of the PlushComfort Ultimate.

You can also unzip the Easy Breather’s cover and scoop out as much shredded-foam filling as necessary to get your ideal loft; it can be a messy process, but it does let you achieve a precise fit.

Source: The Best Bed Pillows for 2021 | Reviews by Wirecutter

For their adjustability and compatibility with pregnancy pillows, the “Sleep Number PlushComfort Pillow Ultimate” and “Nest Easy Breather” have become my regular rotation.

With the PlushComfort, I remove one of the three inserts to get the loft I need. With the Easy Breather, I scoop out the fill until I get it just right.

I have another Easy Breather left fully filled for use as a bolster when I set up in bed. It’s also quite huggy.

Pregnancy Pillows

The pillow has a versatile U-shape that can be used in a variety of positions. Side sleepers may prefer to tuck themselves in the space between its arms to feel supported on all sides, while those with joint pain can use the arms as added support underneath the knees or lower back.

Source: The Best Body Pillows – 2021 Reviews and Buyer’s Guide

I’ve tried several U-shaped pregnancy pillows and found my style of sleep to be compatible with all of them. Here are three I like at different price points.

Tuck says of the Moonlight Comfort-U:

The Comfort-U from Moonlight Slumber is a polyester microfiber body pillow that measures 60″ in length, making it suitable for sleepers of most heights. It can be curved between the legs and around to the back, which is ideal for pregnant woman and other sleepers who prefer extra pillow support in these areas. The Comfort-U makes a comfy headrest for reading or watching TV in bed, too.

Source: The Best Body Pillows – 2021 Reviews and Buyer’s Guide

When I’m side-sleeping, the pregnancy pillow bolsters and squeezes me on each side and supports my down arm. When I’m resting on my back, the arms of the pregnancy pillow support my arms along my sides and also tuck under my knees. When everything is arranged just right, I almost feel a repeal of gravity. I float.

Conclusion

My body + pregnancy + head pillow trio totals US$240. Some of the best money I’ve ever spent.

A Credo for Support: Respecting Autonomy in a Society of Interdependence and Care

Do Not try to modify my behaviour.

Be still & listen. What you define as inappropriate

may be my attempt to communicate with you in the only way I can.

Do Not see me as your client. I am your fellow citizen.

See me as your neighbour. Remember, none of us can be self-sufficient.

Do Not try to control me. I have a right to my power as a person. What you call non-compliance or manipulation may actually be the only way I can exert some control over my life.

Do Not work on me. Work with me.

Source: A Credo for Support

Via: Autism and Behaviorism – Alfie Kohn

This credo is a beautiful recipe for respecting autonomy in a framework of interdependence and care. I’m going to share it with the educators and caregivers that work with our family.

The late Herb Lovett used to say that there are only two problems with “special education” in America: It’s not special and it sure as hell isn’t education. The field continues to be marinated in behaviorist assumptions and practices despite the fact that numerous resources for teachers, therapists, and parents offer alternatives to behavior control. These alternatives are based on a commitment to care and to understand. By “care,” I mean that our relationship with the child is what matters most. He or she is not a passive object to be manipulated but a subject, a center of experience, a person with agency, with needs and rights. And by “understand,” I mean that we have an obligation to look beneath the behavior, in part by imaginatively trying to adopt that person’s point of view, attempting to understand the whys rather than just tabulating the frequency of the whats. As Norm Kunc and Emma Van der Klift urged us in their Credo for Support: “Be still and listen. What you define as inappropriate may be my attempt to communicate with you in the only way I can….[or] the only way I can exert some control over my life….Do not work on me. Work with me.”

Source: Autism and Behaviorism – Alfie Kohn

Previously,