This Chronic Bodymind: How We Cope

Ours is an empire of foam, articulation, and assistive devices. Scheurmann’s kyphosis, lumbar spondylolisthesis, fibromyalgia, wildfire muscle cramps, muscle-boiling fasciculations, and peripheral neuropathy are constant companions for Stimpunk Ryan. As are sensory overwhelm and the effects of autistic burnout.

We adapt our worlds to our bodyminds through niche construction in our Cavendish Space. In this guide are the things we use to conserve spoons, stay below sensory thresholds, and get through each day. These are tested in the field of our disabled and neurodivergent lives. While attempting brevity, we’ll describe how each fits into our flow.

We link to Wirecutter reviews for many of these items. They show their research and list alternatives. Disclosure: Some of the links below are Wirecutter Amazon affiliate links. Wirecutter is a New York Times company.

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Sensory Kit

My sensory kit is always with me. It helps me manage sensory overwhelm and avoid meltdowns and burnout.

I keep my sensory kit in an Arcteryx Maka 1 belly bag (a waist/fanny/lumbar pack worn front). My belly bag is always with me.

Anything I carry around this much can’t be on my back. It must be curated down to the things that are worth their mass and worn below the aching suspension of my pained back. I’m stooped enough. Waist packs worn front hit a sweet spot of retrievability, gravity budgeting, and pain management. I can bear the weight, and when I unzip the compartments, everything therein is first order retrievable.

Foam Ear Plugs

I can’t sleep or endure noisy spaces without ear plugs. I take them everywhere. I’m currently using Wirecutter’s top recommendation, Mack’s Slim Fit Soft Foam Earplugs. Hearos ear plugs also work well for me.

Vibes Ear Plugs

Foam ear plugs can amplify my tinnitus. Even when they turn up the ringing, I keep them in because I sleep better through tinnitus than ambient sound.

Vibes don’t block as much sound as foam ear plugs, but their “breathability” amplifies my tinnitus less. Lately, I’ve been using the Vibes as my go to sleeping ear plug with good results. In noisier environments where I want isolation, I use the foam.

The stems serve as handles, making extraction much easier than with foam.

The snap case that comes with the Vibes is large enough to hold both the pair of Vibes and a pair of foam plugs. I like the size and affirmative closure of the snap case, though it requires two hands to open. It fits easily in the smaller compartment of my belly bag.

Noise-cancelling Headphones

Nose-cancelling headphones are also part of my go-everywhere sensory kit. Since they don’t fit in the belly bag, they are usually to be found around my neck. I feel better knowing they’re there.

I use the pricey Apple AirPods Max because they are pink.

Wirecutter recommends Bose 700s at the high end and the Anker Soundcore Life Q20s at the budget end.

I don’t leave home without noise-cancelling headphones and my favorite sensory management playlist (Spotify, Apple Music).

Note: noise-cancelling headphones are not for everyone. They can aggravate hyperacusis and misophonia. If you can, try noise-cancellation from different manufacturers to see if one is more compatible with you. I’m fortunate to be compatible with the Sony, Sennheiser, Bose, Anker, and Apple noise-cancellation I’ve tried. They all work for me.

The Sonic Bliss of Quintessential Autistic Gear: Noise Cancelling Headphones » NeuroClastic

AirPods

They’re expensive. To get their full benefits, you need an expensive iPhone. I wish this accessibility tech was more affordable, because AirPods make me feel augmented, especially with the arrival of Siri Shortcuts. AirPods provide convenient sensory management and a voice interface to my cognitive net. I leave these in for hours at a time: playing music, setting timers and alarms, creating tasks in Things, and accessing the checklists that order my life. When not in my ears, they stow comfortably in the belly bag in the same pocket as the Vibes snap case (and some other stuff).

I forget I have these hanging from my ears. “Hanging” is the key to comfort. When I first got them, I was “inserting”. Ear burn came on quickly because their hard plastic was pressing against the ridge poking out along the top of my ear canal. Once I let go of the “you gotta push ‘em in there to not lose ‘em” anxiety and started hanging instead of inserting, comfort came.

Two taps to pause. Remove a bud to pause. Instant pairing. Siri Shortcuts. Disability means getting used to bad flow, flow not designed for you, flow not accessible to you. This is good flow that removes some thoughtlessness and frustration from my world.

I once heard a blind person say, “With my cane, my brain, and my trusty iPhone, I can go anywhere.” I agree with the statement completely, but it’s time to update that statement to the 2018 version:

Give me a set of AirPods to go with my iPhone, and I can go anywhere-and surreptitiously know a lot about my environment while doing so.

Travelling into the Future: My Brain, my Cane, and my Trusty AirPods | Chelsea cook: Celestial girl

Sleep Mask

I’m light sensitive, so my go everywhere sensory kit also includes a sleep mask. I like ones with raised eye cups, such as the Wirecutter recommended Nidra Deep Rest. The Deep Rest rolls up compactly and fits comfortably in the large compartment of my belly bag right alongside my sunglasses.

Bluetooth Sleep Mask

Unlike the other parts of my sensory kit, I don’t carry this with me all the time. It’s usually on a bedside table, though I’ll loop it through the belt of my belly bag when I want to keep it with me, such as on a car trip.

I use the mask from Topoint as recommended by Brett Terpstra. The padded nose bridge lifts the mask off the eyes. There’s not as much eyelash clearance as the Nidra Deep Rest, so your lashes might brush the mask when you blink. With eyes closed, I have the clearance I need to be comfortable.

The controls are placed on the left cheek. After laying on my left side for awhile, the pressure is noticeable, though I can still fall asleep.

The controls are certainly not the easiest to use without looking, but I got the hang of it. Since I put the mask on when I’m ready to fall asleep to a favorite playlist or to a white noise generator, I don’t interact with the controls much anyway.

These don’t provide the isolation of an over-ear or ear buds, but they do a good enough job to put me in the sensory space I want to be in.

This mask sleeps hotter than the Nidra Deep Rest.

Sunglasses and Light-reactive Glasses

My bifocals have light-reactive, photochromic lenses that protect my light-sensitive eyes without having to swap into sunglasses whenever I walk outside.

Light-reactive lenses react to UV. Car windows block UV. I always keep a pair of dedicated sunglasses in my belly bag so I can use them when in the car or indoors.

I currently use polarized prescription sunglasses from Warby Parker to supplement my photochromics. Sunglasses make incompatibly lit rooms more hospitable. Wirecutter has recommendations for cheap non-prescription shades.

Beanie Hats

I always have a hat with me. They are an important part of my sensory management. Beanies are my go to because they’re light, packable, and cover my ears.

Slouchy beanies with an open pattern are my go to for sensory regulation because they allow me to scratch and pick my scalp without taking the beanie off. I can go through the holes, or I can get my hand up under the hat since it’s slouchy. I get my slouchy beanies at Purple Sage Designz.

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.

The Self-injurious Stims that I Love
Slouchy beanie with a loose weave and variable pink and green coloring sitting on a table
Slouchy beanie with a loose weave and variable pink and green coloring sitting on a table

When I want more warmth or a tighter fit, I like Smartwool’s beanies. I use these as liners beneath a slouchy beanie.

My lightest weight beanie is a Smartwool PhD Ultra Light. It stuffs down small enough to keep in my belly bag at all times. This hat can actually cool me down when out in the sun. It blocks some rays while wicking sweat. Sometimes, I put it on and immediately feel that evaporative cooling sensation.

It doesn’t go down over the ears as much as I’d like, though. I find myself trying to tug it down.

My go to beanie is the Smartwool PhD Light. It has the full ear coverage I like. It’s notably heavier than the Ultra Light since it is two layers instead of one, but it still packs down small enough to fit in the belly bag.

Smartwool’s The Lid comes out when I need a little more warmth. It’s too big to pack into the belly bag, so I loop it through the belt of the bag.

I like the fit and scalp pressure of Smartwool’s beanies.

Stim Toys

Beads are stimmy goodness. We make stim jewelry from beads and beading wire. I keep a stim loop attached to the belly bag. I put a finger’s width of slack in the wire of the loop so that I can spin and slide the beads. It can be used one-handed while attached to the bag or can be removed for two-handed play.

A stim loop made from brass ball bearing beads, turquoise heishi beads, copper basket beads, and irregularl shaped turqiouse beads with one flat side. Medium weight beading wire holds it all together. The loop rests on a white beading mat.
A stim loop made from brass ball bearing beads, turquoise heishi beads, copper basket beads, and irregularl shaped turqiouse beads with one flat side. Medium weight beading wire holds it all together. The loop rests on a white beading mat.
Another view of the stim loop resting on a green cutting mat with a white ruled grid.
Another view of the stim loop resting on a green cutting mat with a white ruled grid.

Happy Hands sells a variety of stim toys.

Antsy Labs sells fidget cubes and spinners.

Stimmy things available on Amazon:

Communication Necklaces

Pillows: 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.

Reading Pillows

I can’t work without reading pillows. I work from bed. Reading pillows sit me up to where I can be productive at a keyboard.

After reading Amazon reviews on various reading pillows, I settled on the Linenspa Reading Pillow – Large Design for Adults – Shredded Memory Foam Blend Fill. I liked it enough to buy a second one. Shredded foam really works for me in this application. It conforms and supports nicely. The arms are in a good place for me and can be pushed aside when I don’t want them.

This pillow is big and rather heavy. I invert mine to fluff it every few days. The size makes the process a bit of a wrestle.

This pillow doesn’t provide head support (at least not at my 5’8” height), so I supplement with the shredded foam stuffed sham mentioned earlier. I made it the thickness I need to fill the gap between my head and the wall. Pillows that are stuffed even just a little bit too thick pitch my head forward uncomfortably.

Neck Pillows

Of the travel/neck pillows I’ve tried, only the Travelrest Ultimate Memory Foam Travel Pillow suits my needs because it removes the thickness at the back of the pillow so that my head doesn’t pitch forward. Pillows that don’t reduce thickness behind the head are non-starters.

Like so many travel pillows, the Travelrest presses against my AirPods and over-ear cans. Someday, I’ll find a pillow that removes the rear thickness, contours around headphones, and still supports my head when it’s lolling to the side.

I use neck pillows in the car and also, at times, while working from bed. There are days when my neck gets tired of keeping my head on.

Lunix Orthopedic Bed Wedge Pillow

The Lunix wedge system has gotten us through post-surgery recovery and the every day coping of chronic pain. It’s great for working from bed. Ryan uses it in combo with his pillow trio and a bed desk.

Articulation

I can’t hold a phone, tablet, or e-reader for long without hand, wrist, elbow, shoulder, and neck pain. I can’t use a laptop unless it’s positioned just right. So, I articulate all the things. I spend a lot of time in the supine; articulated tablet, laptop, and e-reader holders are a must.

Rolling Floor Stands

We have three LEVO Deluxe iPad Floor Stands that have survived years of continuous abuse. They are tough and stable. The kids use the arms as stim toys for fidgeting feet and even ride them around the house like scooters. These stands have held up through all of our indelicate attentions.

I roll these up next to the bed or couch whenever I’m spending time on my phone or e-reader. Not using them is to invite pain.

Monitor Arms

I clamp an Ergotron LX Tall Pole LCD Arm to my bed frame. It is fitted with an extension arm and a laptop tray. This provides the articulation I need to find a comfortable repose whether watching TV or sitting up against my reading pillow and typing. The tall pole provides mattress clearance, but if you have a super-thick mattress you might have to get creative with clamping.

I love this arm. It hovers my laptop over me in bed, making work possible. I’m glad I got the extra extension arm. It adds needed height to clear me in bed and extends its range to the width of the bed. I strap a UE ROLL 2 to the extension arm. This puts it at the prefect height and orientation to send sound up along my reclined body.

Consult Wirecutter’s monitor arm review for options.

Gooseneck Phone Holders

Gooseneck phone holders aren’t so great for actually using your phone while mounted. They jiggle too much. However, when watching a movie in a hotel room where I don’t have my floor stand, they save a lot of pain. I clip one to my bedside table and throw it in a tote bag when I travel.

We like the “SAIJI One-Hand Angle Adjustment Phone Stand Desk Mount” because it combines a firm gooseneck with a rod at the end that easily tilts and rotates, addressing a hassle with traditional goosenecks.

Pillow Stands

I’m always looking for ways to save pain while using my phone in bed. Often, neither focal range on my bifocals is comfortable for reading because neck and shoulder pain limit the positions in which I can hold a phone. In such moments, I take off my glasses and put my phone on a SAIJI Pillow Stand perched on my chest. This way, I can position my phone exactly where I need it to accommodate both my eyes and my neck.

We love SAIJI’s pillow stands.

Hands-Free Smartphone Neck Mount

This cheap hand-free smartphone neckmount on Five Below saved a Stimpunk a lot of pain during recovery from back surgery.

Surfaces

Bed Desks

The SAIJI bed table is big, stable, and easy to adjust.

Pillow Desks

When we don’t need to get out the big bed desk, we use this pillow desk.

Tray Tables

We roll our wheelchairs up to these tray tables.

Sitting

Seat Cushions

I take a seat cushion everywhere I go, especially when navigating the usually awful chairs of the medical model. These make waiting in a doctor’s office more bearable.

I used to use coccyx pillows like the ComfiLife and the Aylio. Now, I use Purple seat cushions and will never go back to a coccyx pillow. I travel with the Purple Simply. One is always in the car. I use the thicker Purple Royal at home. If I’m sitting, it’s probably on one of these cushions.

The Wirecutter reviews Purple cushions in their guide to best ergonomic seat cushions.

Task Chairs

If you love your spoonie to the tune of 800 – 2000 bucks, I can recommend the Steelcase Leap, the Steelcase Think, and Soma Ergonomics chairs. We’ve had all three around the house for several years, and they are well-built survivors. The Leap is approaching twenty years old and still holding up comfortably.

Wirecutter recommends the Steelcase Gesture. I’ve never tried it, but I’m sure it’s good.

Portable Moon Chairs

Moon/saucer chairs certainly aren’t for everyone, but I take a big KingCamp moon chair with me to outdoor events. I use them at home too for lounging outside. I like the room big saucers provide, and they support my curved back more comfortably than upright chairs.

A light, cheap, packable option for brief sits is the Coleman Event Stool.

Standing

Standing Mats

I couldn’t cook or wash dishes without standing mats in the kitchen. These extend my functional time and reduce painful bouts of sciatica, paresthesia, and fasciculations. I use the ComfiLife flat mat suggested here.

Relaxing

Heating Pads and Blankets

I have too much kyphosis (curvature) in my spine. The result is constantly aching back muscles stretched like cables supporting a poorly designed suspension bridge. I pretty much live on a heating pad to ease the deep, abiding ache. Check out the Wirecutter recommendations for heating pads and electric blankets. I use their top recommendation, the PureRelief XL – King Size Heating Pad, daily.

Moving

I use a few mobility devices to extend my range and stay below thresholds.

Folding Walking Canes

My Switch Sticks folding walking cane has been a reliable companion. Adjustable and durable, this fits and hasn’t let me down. They come in many colors and patterns and are tote bag stuffable.

Flipsticks

With a Flipstick, I always have a seat with me. I put a padded bicycle seat on mine and cut a hole through it to provide access to the button that locks and unlocks the seat.

When I’m waiting in a chair in a doctor’s office, I lean forward and support my head on the Flipstick’s seat. My kyphosis pitches me forward. With the Flipstick, I can go with my tendency to lean and be supported. I use it in this mode more often than I use it as a seat.

This seat has saved me when caught in unexpectedly long queues without a rollator or wheelchair. It’s not exactly comfortable, but when my legs are ready to buckle, I’m glad I have it. When sitting on this, form a tripod with your legs and the stick.

There is a little slop in the seat mechanism and the collapsible sections. The Switch Stick has a tighter fit and doesn’t have a rattly flip seat. If you can’t stand any rattle or slop in your collapsible canes, the Flipstick might be a bad fit.

Ta Da Lightweight Portable Hiking Stick/Cane and Folding Seat

One Stimpunks uses this seat cane A LOT.

Rollators

My Drive Medical rollator has also been reliable. It assists me on longer bouts of walking and avoids the often fruitless search for seating. I sometimes wish I had a side-folding rollator for navigating narrow doorways, but those are more expensive, and the seat hinges down the middle, which bothers some.

Wheelchair Upgrades

Spinergy wheels, Surge handrims, Schwalbe Marathon Plus tires, and izzy wheel covers are popular upgrades many wheelchair users would love to have. Check with them first; wheelchairs are very personal.

Reaching, Gripping, Grabbing

Reaching Tool

Our Ettore Grip’n Grab: Multi-Purpose Reach Tool with Rotating Rubber Grip Head has held up.

  • Rotating head
  • Rubber jaws delicate enough to adjust the speed control on our table fan
  • Lightweight

Telescoping Back Scratcher

My Cactus Scratcher is life-changing. It telescopes down into a belly bag, so I can scratch my back anytime!

Fastening

Cane Holders

We put Crutcheze Cane Holders on our canes and grabbers so we can hang them anywhere.

Hydrating

Water Bottles

Always be hydrating. We have several Takeya water bottles in the house. I always have one with me. Once again, check out Wirecutter’s review and survey of the field.

Travel Mugs

The Wirecutter recommended Zojirushi 16 ounce stainless steel travel mug is one of my favorite things. The opening action on the button and flip cap is reliable, stimmy goodness. The cap closes with a satisfying click. The flow is just right. The heat retention is superb. Bed-time tea is often still hot enough in the morning to enjoy.

The Feet

Be kind to your feet.

Cozy Slippers

Cozy slippers make life better.

I like to sit outside, even as the temperature drops. Baffin Base Camp booties are sleeping bags for my feet that keep my feet warm through a full winter season of porch sitting. They’re great in the house too.

I slip contractor boot covers over mine when I want to trudge around in them outside.

Custom Orthotics

Custom orthotics are one of the best investments I ever made. I’m a flat-footed over pronator who’s had a lifetime of grief with my feet, including having my feet forcibly shaped by hard plastic orthotics as a kid.

The orthotics of today aren’t those wretched things I had as a kid. For too long, that childhood experience prevented me from giving orthotics another go. I don’t walk more than 20 steps without the 3/4 length orthotics I have now. Without them, even a brief walk of just one minute induces foot pain.

Orthopedist fitting individual orthopedic insole for patient foot
Orthopedic insoles. Orthopedist fitting individual orthopedic insole for patient foot

My podiatrist used a plaster cast method, and I’ve been very happy with the results. A portable cast of your foot transforms every shoe.

If you want to change the life of someone with foot issues, spring $500 for custom orthotics.

Motion Control Shoes

My go to motion control shoe is the Brooks Beast. These are expensive shoes, so expensive that I wear them years longer than I should. Funding fresh motion control kicks for the over pronator in your life is a nice move.

Yankz and Lock Laces

Our dyspraxic family uses Lock Laces to avoid knot tying. Yankz is a similar brand. I’ve never owned Yankz, but I see both them and Lock Laces recommended in the #ActuallyAutistic community. The main difference seems to be the tensioning clip in the Yankz. I don’t need that part.

Accessible Shoes

There isn’t much selection in accessible shoes, making Nike’s Flyease all the more appreciated. Every shoe company should have an accessibility line. We buy Flyease.

Clothing

Clothing and texture preferences are very personal. Here’s what’s compatible with me and my sensory needs.

Hoodies

I like soft cotton and micro fleece hoodies with zipper fronts, ample hoods, and pockets. I live in hoodies. I recede into their comforts. They provide sensory insulation.

Hoodie requirements:

  • Soft
  • Zipper front
  • Ample hood
  • Divided hand warmer pockets

I have limited shoulder flexibility and cramp readily when trying to shimmy out of long sleeve pullovers. All of my outerwear has a means of escape, preferably a YKK zipper.

Hoods

Turn any outfit into a hoodie with a separate hood.

Thai Fisherman Pants

Model standing in green Thai fisherman pants with multi-colored flowers
Thai Fisherman Pants

Inexpensive, comfortable, and capable of being both your fat pants and your skinny pants, Thai Fisherman Pants are what I wear pretty much all the time. I get mine from AleyaCraft.

Thai fisherman pants are secured with a knot. Knot tying isn’t accessible to everyone. I still have enough hand dexterity to tie bow knots, so I haven’t had to work around the knot requirements of fisherman pants.

BTW, if you tie shoelaces using the bunny ear method, you might be tying Granny Knots instead of more secure Reef Knots. I did this for a long time before habituating myself to switch my starting knot from left over right to right over left.

Of the three common knotting techniques, the Two Loop Shoelace Knot (or “Bunny Ears” method) is probably the one that is most often tied incorrectly. The technique consists of one knot tied with loose ends followed by a second knot tied with loops. People naturally tie both stages exactly the same way, resulting in a “Granny Knot”. This has given it a bad reputation as an inferior knot – whereas it’s actually quite secure if tied correctly.

…if you currently tie your starting knot: “Left end over Right end & through”, simply change it to: “Right end over Left end & through” – or vice versa.

Source: Ian’s Shoelace Site – The “Granny Knot”

Tracking and Finding

Tile Trackers

Medications and chronic pain can increase distractibility and impact cognition. I attach Tile trackers to keys, canes, headphones, purses, and bags. I attach one to the key leash of the belly bag. Searching for necessary coping tools while grimacing with pain is frustrating and dispiriting. Tile trackers provide a comforting cognitive net.

Double pressing the button on the Tiles rings your phone. With a Tile on my belly bag (as well as on my headphones and canes), I’m always able to summon my phone from its hiding places in the depths of couches and bedding.

Eyeglass Chains

Tiles are too big to put on eyeglasses. Luckily, there’s a great, no-tech eyeglass locating technology: eyeglass chains. Put chains on your glasses and stop wondering where you set them down.

As I became more presbyopic, I found myself losing track of my glasses because I’d take them off to read and see up close. Putting my eyeglasses on a chain has saved me a lot of frustrated searching.

I get my chains from Heavenly Chains.

Crystal Butterfly Eyeglass Chain
Crystal Butterfly Eyeglass Chain by Heavenly Chains

Cutting and Opening

Utility Knives and Scissors

A good utility knife and a good pair of scissors assist package opening chores and household cutting. In our dyspraxic, repetitive-strain-wracked household, we cut instead of pull, rip, and tear. The Wirecutter recommendations for utility knife and kitchen scissors have served us well.

Hauling

Utility/Grocery Carts

I picked the Wellmax WM99024S Grocery Utility Shopping Cart from the competition based on Amazon reviews. I haven’t had cause to regret the choice. When driving to out of town hospitals and staying in hotels, the cart handles schlepping our coping array to and from the car. At home, we use it for bringing in groceries from the car.

Save trips and save your back. Get some wheels.

Collapsible Wagons

When we’re hauling more than the utility cart can hold, we go wagon.

Hygiene

Tushy Classic 3.0 Bidet

Twisting and reaching to wipe can be impossible post surgery. The Tushy Classic 3.0 is an affordable bidet.

Lighting

Task Lighting

Stimpunks includes some flashlight and home automation geeks. We’re always on the look out for lighting that is accessible to use and maintain and doesn’t induce sensory overwhelm or fatigue.

We’ve standardized on Olight for portable lighting. Their magnetic charging is convenient enough to make the difference between a light being charged and ready to go or not. The lights magnetically attach to a growing ecosystem of chargers.

The Olight Baton 3 is our everyday carry (EDC) flashlight of choice.

  • Magnetic charging
  • Magnetic tail
  • Tail stands
  • Pocketable size
  • Sturdy, stimmy, two-way clip
  • Approachable UI
  • Firefly mode
  • Turbo mode
  • Memory
  • Stimmy texture
  • Wears nicely for Boba Factor

Baton 3 Rechargeable EDC Flashlight 1200 lumen with charger – Olight Store

We use OLIGHT Obulbs as backlights for our laptops, ambient lighting, and task lighting. Ryan uses them every day when working in the early AM from bed. He puts one behind his laptop sitting on a bed desk to act as a backlight. He puts one on the bedside table to provide ambient lighting gentle enough not to wake others.

  • Magnetic charging
  • Magnetic base
  • Approachable UI
  • Available in multi-color, motion sensing, and Bluetooth controlled versions

Obulb Wireless Light Bulb for Outdoor & Camping – Olight Store

An Olamp Nightour sits on our bedside table.

  • Warm white and rainbow ambiance
  • Detachable spot reading light that turns on and off with a click or with a shake
  • Small footprint

Olamp Nightour Dimmable LED&Ambient Table Lamp – Olight Store

We pop our Baton 3 and Obulbs on OLIGHT Omino 4-port magnetic chargers. So convenient.

Omino 4-Port Magnetic Flashlight Charger – Olight Store

Room Lighting

We want warm white. The warm glow effect dimmable bulbs from Philips shift color temperature as they dim, from 2200 to 2700-kelvin, like an incandescent does. We find soft, warm white light on dimmers to be broadly pleasing and sensory compatible.

Technology Connections offers this warm ode to warm glow.

Note: these bulbs have an uncertain future and aren’t as efficient as the competition. Look for the Title 20 versions of the bulbs with a CRI over 90.

Patrons of the channel have uncovered some more info which… makes the future look less bright. It looks like Home Depot is indeed no longer going to stock these in-store and is clearancing out what remains. Whether they’ll continue to sell them online is unclear. Confounding things, these aren’t state-of-the-art when it comes to their efficiency. I mean, it’s still very good if you ask me! Near 100 lumens per watt, but they’re eclipsed by newer bulbs. In markets which rate bulbs by their efficiency these look worse compared to their peers. There’s also some speculation that these don’t meet certain regulatory requirements for light quality. That I’m unsure of because the rated CRI of the product line varies, with many achieving 90. In any case, I would think Philips could update this product line to be more efficient and meet whatever other requirements might be needed, but I’m afraid there’s little reason for them to do it. Kicking and scream I shall be, a little bit.

Is Philips discontinuing their coolest warmest product? – YouTube

We like our lights warm and on dimmers. The Lutron Caseta smart wireless dimmer ecosystem is the gold standard in home lighting automation. We have lots of home automation experience, and Lutron Caseta has proven itself. Caseta is the best choice we made in our smart homes. Being able to adjust lighting with voice, app, or Pico remotes is an accessibility boon.

  • Reliable
  • Responsive
  • Compatible with all major voice assistants

Cognitive Net: Analog, Ivy Lee, and the Leverage of Simple Interventions

Checklists

We love checklists.

Checklists are simple interventions with lots of leverage.

All the examples, I noticed, had a few attributes in common: They involved simple interventions—a vaccine, the removal of a pump handle. The effects were carefully measured. And the interventions proved to have widely transmissible benefits—what business types would term a large ROI (return on investment) or what Archimedes would have called, merely, leverage.

Plain soap was leverage.

The secret, he pointed out to me, was that the soap was more than soap. It was a behavior-change delivery vehicle.

The Checklist Manifesto | Atul Gawande

Analog

We complement our digital coping systems with analog, in particular Analog from Ugmonk. Ugmonk’s Analog is a simple intervention with lots of leverage, an accessible and achievable system, beautifully distilled.

Index card oriented vertically with a todo list handwritten on it.

Analog doesn’t replace your digital tools, it works alongside them by helping you focus on your most important work.

Analog is a simple, repeatable process. Starting fresh with a new Today card helps you adjust to your changing priorities.

At the beginning of each day, write up to 10 tasks on a Today card.

Use Task Signals to mark each task as completed, delegated, or in progress.

Carry over unfinished tasks on a new Today card, or move some of them to a Next or Someday card.

Analog – Ugmonk

Fitting with our love of constructionism, each Today card is an artifact, a wonderfully textured and considered artifact that captures a day and a moment in your life.

Ivy Lee

During his 15 minutes with each executive, Ivy Lee explained his simple daily routine for achieving peak productivity:

At the end of each work day, write down the six most important things you need to accomplish tomorrow. Do not write down more than six tasks.

Prioritize those six items in order of their true importance.

When you arrive tomorrow, concentrate only on the first task. Work until the first task is finished before moving on to the second task.

Approach the rest of your list in the same fashion. At the end of the day, move any unfinished items to a new list of six tasks for the following day.

Repeat this process every working day.

On Managing Priorities Well

Ivy Lee’s productivity method utilizes many of the concepts I have written about previously.

Here’s what makes it so effective:

It’s simple enough to actually work.

It forces you to make tough decisions.

It removes the friction of starting.

It requires you to single-task.

The Ivy Lee Method: The Daily Routine for Peak Productivity

Interest-Based vs. Importance-Based

Autistic and Kinetic (ADHD) people have interest-based rather than importance-based, priority-based nervous systems.

If you ask a person with ADHD, has the importance of the task ever once in your life been useful to you, a person with ADHD with honesty can say no. Importance rewards and consequences are nothing but a nag to me.

“I have always been able to do anything I wanted to do so long as I could get engaged through interest, challenge, novelty, urgency, and passion.”

“I have never once in my life been able to make use of the three things that organize and motivate everybody else: importance, rewards, and consequences.”

There are implications for this as well. Not being able to make use of importance makes decision-making almost impossible. If importance and priority do not organize and motivate us, and if what we get out of a particular choice does not matter to us at all, all choices look the same, all starting points look the same. They’re all sort of shades of grey. That makes planning and organization very difficult. You don’t know what your goals are. Most planning systems are built for people who are neurotypical because they are based on two things that the ADHD nervous system doesn’t: importance and time.

Consequently, Franklin Covey is nothing more than a setup for failure for people with ADHD.

Defining Features of ADHD That Everyone Overlooks: RSD, Hyperarousal, More (w/ Dr. William Dodson) – YouTube

Analog + Ivy Lee is simple enough to help interest-based neurotypes cope in priority-based cultures.

Music and The Golden Age of Television

TV is a balm when in pain, out of spoons, and confined to bed. Get a video streaming subscription for your favorite #ChronicLoaf. Note that Hulu is negligent in providing audio descriptions, so maybe pick another service for Blind and visually impaired folks.

Music helps manage sensory overwhelm and is an unguent for souls. Spotify and Apple Music subscriptions cover every mood.

Here, enjoy a minimalist chill. The repetitive structures of minimalist compositions are part of my sensory management.

The Future is Accessible, Accessibility Matters, and Ableism is Awful Apparel

Support disabled people, and spread the message of accessibility. Accessibility Matters and The Future is Accessible apparel are not always available (the campaigns run for limited time windows), but grab something for the spoonie in your life when they are. If the campaigns currently aren’t open, hit the “I Would Buy This!” button to signal interest in the next campaign.

Rest

We urgently need a society that’s better at letting people get the rest they need.

Fergus Murray
orange tabby cat lying on blue comforter
WIP
by Kristina Daniele

I’m in pain.
Mental. Physical.
The result’s the same.
Retreating into silence.
Resting my brain.
Taking deep breaths.
Trying to reframe.
Writing in my journal.
Listening to myself.
Trying to get centered
But drifting to the left.

I’m in pain.
Mental. Physical.
Emotionally, it’s the same.
Stimming to reset
Moving to get rest.
Blocking out the world,
And listening to myself.
Trying to get centered
But drifting to the left.
I'm a work in progress.
I'm not finished yet.

Nothing in this culture wants us to have rest. Wants us to have ease. Wants us to have care. The softness was stolen. Our dreamspace has been stolen. Our space to just be has been stolen.

Tricia Hersey, founder of The Nap Ministry.
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