A #ChronicHolidays Gift Guide for Chronic Illness, Chronic Pain, Sensory Management, and Stimming – 2018 Edition

Mine is a tiny 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. As are sensory overwhelm and the effects of autistic burnout.

In this guide are the things I use to conserve spoons, stay below sensory thresholds, and get through each day. These are tested in the field of my disabled and neurodivergent life. While attempting brevity, I’ll describe how each fits into my flow.

I 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.

Contents:

  • Sensory Kit
    • Foam Ear Plugs
    • Vibes Ear Plugs
    • Noise-cancelling Headphones
    • AirPods
    • Sleep Masks
    • Bluetooth Sleep Masks
    • Sunglasses and Light-reactive Glasses
    • Beanie Hats
    • Stim Toys
    • Communication Necklaces
  • Pillows, Bedding and Bolsters
    • Shredded Foam Pillows
    • Neck Pillows
    • Body Pillows
    • Coccyx Pillows
    • Heating Pads and Blankets
  • Articulation
    • Rolling Floor Stands
    • Monitor Arms
    • Gooseneck Clip Phone Holders
    • Neck/Lazy Bracket Phone Holders
  • Sitting
    • Task Chairs
    • Portable Moon Chairs
  • Standing
    • Standing Mats
  • Mobility
    • Folding Walking Canes
    • Flipsticks
    • Rollators
    • Wheelchair Upgrades
  • Hydration
    • Water Bottles
    • Travel Mugs
  • The Toes Knows
    • Cozy Slippers
    • Custom Orthotics
    • Motion Control Shoes
    • Yankz and Lock Laces
    • Accessible Shoes
  • Clothing
    • Zipper Hoodies with Pockets
    • Thai Fisherman Pants
  • Tracking and Finding
    • Tile Trackers
    • Eyeglass Chains
  • Cutting and Opening
    • Utility Knives and Scissors
  • Schlepping
    • Utility/Shopping Carts
  • Music and The Golden Age of Television
  • The Future is Accessible, Accessibility Matters, and Ableism is Awful Apparel
  • Sex Toys
  • Medical Cannabis
    • Dry Herb Grinders
    • Dry Herb Vaporizers
    • Rolling Papers and Tips
    • About Botanicals
    • Concentrate Vaporizers
    • Silicone Water Pipes
    • Quartz Bangers
    • A Good Torch
    • CBD
    • Medical Marijuana Accessibility

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 Sennheiser Momentum 2.0 Wireless headphones that I received as a gift from work (thanks Automattic). For more affordable options, check out Wirecutter’s recommendations.

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

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.

Source: 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, cover my ears, and provide gentle, even pressure to my scalp.

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. Smartwool, a slightly longer PhD Ultra Light would suit me fine.

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. I make my own 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.

I use a length of light shock cord as a zipper pull. The stretch is stimmy goodness. I ran the cord through a piece of rubbery tubing. I enjoy the texture and the tug of this simple stim.

A yellow shock cord with rubber tubing attached to a zipper pull of the belly bag. My finger pulls the cord to demonstrate the stretch. A fuzzy pink pillow is in the background.
A yellow shock cord with rubber tubing attached to a zipper pull of the belly bag. My finger pulls the cord to demonstrate the stretch. A fuzzy pink pillow is in the background.

StimTastic sells lots of different stim toys.

Stimtastic is affordable stim toys, chewable jewelry and fidgets for autistic adults and teens as well as individuals with SPD, ADHD/ADD, dyspraxia . . . everyone who stims! Run by an autistic person, Stimtastic celebrates stimming as a natural part of our lives.

Source: About Stimtastic — Stimtastic

Antsy Labs sells fidget cubes and spinners.

Communication Necklaces

Promote neurological pluralism and “opportunity but not pressure” with communication necklaces.

Pillows, Bedding and Bolsters

Any part of me that touches the world is gonna ache soon enough. Pillows improve my relationship with gravity, which pulls like a sickness.

Shredded Foam Pillows

I’ve tried various foam pillows over the years, but their heavy density and warm nature didn’t work for me. Shredded foam pillows fix these problems. Though heavier than down and poly fill, they’re not as heavy as the solid foam of old. The extra weight vs. the lighter fills gets you some moldability and conformability. I mold out space to accommodate my AirPods when side-sleeping. I can even mold out enough space for my big over-ear cans, though that’s still not quite comfortable.

Once again, I tried the WireCutter recommendation, the Xtreme Comforts Shredded Memory Foam Pillow (standard), and am happy with the result. The Extreme Comforts comes overstuffed, allowing you to remove the fill until you get the feel you like. I removed enough to stuff a small sham for use as a head pillow when lying against my shredded foam reading pillow. Shredded foam has taken over my bedding.

I don’t overheat in this pillow. Good temperature regulation and moldability without burdensome weight make for a pillow that works for me.

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.

Body Pillows

The Company Store Down-Free Fill Body Pillow is my cuddly alignment companion. I’m a dedicated side sleeper even though becoming a back sleeper would ease some pain. A full length body pillow reduces distracting shoulder and arm pressure and aligns my hips and knees.

Side-sleepers may find it comfortable to hug a body pillow, reducing pressure on the bottom shoulder and arm. It can also be comfortable to tuck the pillow between the knees, preventing the pelvis from tilting forward or backward: “If you sleep on your side without a pillow between your legs, the muscle fibers can get overstretched,” Ryan told us. Keeping the ankles separated and parallel during the night can also be comfortable, Ryan said, especially for people who experience swelling.

Source: The Best Body Pillow: Reviews by Wirecutter | A New York Times Company

A 72”, this pillow is longer than I am tall. I like that. It’s a feature The Company Store pillow has over others, as noted in the WireCutter review. I considered going with a shredded foam body pillow since it works for me in other applications, but decided to go with a lighter fill given the long length. I don’t regret it. The TCS body pillow has the right amount of loft, poof, and rebound.

Coccyx Pillows

I take a coccyx pillow 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’m sitting on the ComfiLife Orthopedic Coccyx and Posture Support Wheelchair and Office Seat Cushion as I write this guide.

The two coccyx pillows I see most often recommended are the ComfiLife and the Aylio.

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.

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 glued large rare earth magnets (salvaged from some aquarium equipment) to their faces. I like magnetic phone attachment.

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 Clip 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.

As with the floor stands, I glued a magnet to my holder. I got a clamp style holder, but the jaws are quite deep enough for my iPhone 7+ in a wallet case stuffed with cards. Actually, I glued a magnet to a small metal rolling tray that happens to fit the jaws of my holder. Holder clamps tray, magnet on tray hold phone. Magnetic versions aren’t as common, but I should try one.

Neck/Lazy Bracket Phone Holders

I’m always looking for ways to save pain while using my phone. 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 GoWith [Magnetic Tablet & Cell Phone Holder worn around my neck. This way, I can position my phone exactly where I need it to accommodate both my eyes and my neck.

I usually use this when sitting outside reading. I’ll sometimes walk around with it on while running through household checklists.

Sitting

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 CORE padded moon chair or KingCamp Sofa 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 Imprint flat mat suggested here.

Mobility

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.

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.

Hydration

Water Bottles

Always be hydrating. We have several 27 ounce Klean Kanteens in the house. I always have one with me. Make sure you get the version 3.0 Sport Cap. These have a satisfying flow and chug. They’re dialed in just right for my preferences. 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 Toes Knows

Be kind to your feet.

Cozy Slippers

Cozy slippers make life better. The toes knows. (Dammit, Kevin Spacey, you’ve ruined this reference.)

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.

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.

Zipper Hoodies with Pockets

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

My current hoodies are the SCOTTeVest Cotton Hoodie and Microfleece Hoodie. The SCOTTeVest hoodies cover my requirements:

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

And some of my nice to haves:

  • Top-drop pockets
  • Thumb holes in the cuffs
  • Too many pockets
  • Eye mask built into the hood
  • YKK zippers

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.

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 Amonchai.

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.

They have to be replaced each year, which gets expensive. Tile recently released a Pro Tile with a replaceable battery. Next time I have to replace one, I’ll try a Pro.

Eyeglass Chains

Tiles are too big to put on eyeglasses. Luckily, there’s a superior eyeglass locating technology: eyeglass chains. Put chains on your glasses and never wonder where they’re at again.

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.

Etsy sellers have a wide selection of eyeglass 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.

Schlepping

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.

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 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.

Sex Toys

Masturbation reminds you that your body is about more than pain. Get some toys. The Magic Wand is a good general purpose massager and sensory stimulator. Again, I’ll rely on Wirecutter recommendations since they show their work and offer alternatives.

Medical Marijuana

A #ChronicHolidays guide doesn’t feel complete without some chronic. Medical marijuana is a life saver for many. It’s an ally to disability and neurodivergence. It eases chronic pain, aids sleep, reduces sensory overwhelm, and heads off overwhelm and PTSD-induced meltdown. I prefer vaporizing hash oil concentrates, especially at bed time, but combusting a joint while amidst nature appeals to a Promethean and free wildling part of my nature. Here are suggestions for grinders, rolling supplies, dry herb vaporizers, and concentrate vaporizers.

Dry Herb Grinder

I currently use a large Space Case Grinder Sifter. Larger diameter cases are easier on my hands and wrists. The threads on this case are fine and need to be kept clean. 99% isopropyl helps with that and all medical marijuana related cleaning needs. I’d prefer something with coarser, less-cloggable threads, but as long as I keep the threads clean I can get by. The Wirecutter has grinder recommendations, but I haven’t tried any of them.

Dry Herb Vaporizers

I’ve tried several dry herb vaporizers over the years. Most did not stay in my rotation long. The AirVape X bucks that trend. It has a minimal air path, which means less cleaning. The large rim funnels down into the oven, which means less spilling of precious medicine.

The AirVape X is the Wirecutter recommendation for dry herb vaporizer. Check out their review for details on why this vape is easier to use than others.

Rolling Papers and Tips

I use RAW organic hemp rolling papers and tips. I always roll with rolling tips (also called crutches or roaches). They make hand rolling easier and provide a more comfortable burn as you get to the end of your number. You won’t have incendiary hippie grenades hitting the back of your throat if you z-fold your rolling tip. If you don’t have any rolling supplies, kits that include a rolling tray, rolling machine, rolling paper, rolling tips, and a doob tube are convenient.

About Botanicals

Cannabis is a botanical. That’s means the possibility of allergies, especially when combusting dried flower. If you’re sensitive to botanicals, concentrates like butane hash oil (BHO) will better suit you. BHO uses butane as a solvent. Most of it is purged off, but if you’re sensitive to butane try a solvent-less concentrate like rosin.

Concentrate Vaporizers

I prefer inhaling my meds. Vapor is the most bio-available delivery method. Inhaled vapor gives instant relief and dosing feedback since it goes straight to the brain.

For concentrate vapes, I’ve had good luck with Linx products. I’m currently using the Linx Ares Honey Straw. It’s straw design means there are more surfaces in the air path, which means more cleaning. I clean it with an alcohol wipe every time I recharge and haven’t had any problems with it so far. When kept clean, straw and nectar collector designs provide the best flavor and cleanest hits. If you enjoy terpenes and revel in the taste of living green, try a straw design. With straws, you can dab straight from wax paper and silicone or glass containers. They’re not as discrete or handy for vaping on-the-go as pens though. The setup I like is a pen for continuous micro-dosing during the day and a straw or e-rig for heavier dosing at night.

I’ve used and enjoyed the Dr. Dabber Aurora. The magnetic sections are wrist friendly, but I found that the mouthpiece would come loose in my pocket. I fixed that with a piece of gaffer tape. Dr. Dabber has responsive customer service and stood by their product when I broke the ceramic pin on my Boost e-Rig.

Something to keep in mind with concentrate vaporizers is that you will have to regularly replace the atomizers (or heating tips for straw style devices). They get gunked up with resin over time and must be replaced. Factor the price of atomizers/tips and 99% isopropyl alcohol into the total ownership cost.

Here’s a survey of popular vape pens.

With all of these devices, you have to keep them clean, clean, clean. Always have 99% isopropyl handy. Amazon offers bottles by the case.

Silicone Water Pipes

I got tired of breaking glass water pipes and went silicone. I ended up with a Waxmaid. Other popular brands are Strong Silicone and Roll Uh.

Quartz Bangers

Turn that silicone water pipe into a dab rig with a quartz banger. I’ve used domed and domeless nails of all sorts. My preference is the quartz banger. They’re easy to use and provide a clean hit.

A water pipe with a quartz banger is an enjoyable way to apply a bed time dose.

A Good Torch

I’ve gone through a lot of torches. The only one to last more than 6 months is the Blazer Big Shot. Mine still strikes after almost 6 years of regular use.

CBD

There are a lot of hemp-derived CBD (cannabidiol) products on the market right now. They are currently legal in all 50 states in the US. There are a lot of rip offs out there, so watch out.

CBD is a cozy blanket of calm. I don’t find the hemp-derived CBD concentrates to be as effective as marijuana derived concentrates, but they still help.

In my experience, CBD works better in concert with THC. 1:1 CBD:THC products suit me nicely. If you don’t have access to medical marijuana derived CBD, the hemp stuff will certainly suffice. CBD can help reduce dependence on opioids. If you experience opioid constipation, CBD could be a life changer.

CBD concentrates comes in many forms. Crystals are flexible and multi-use. You can sprinkle them on food, swirl them in drinks, cook with them, and even dab them with dab rigs, vapes, and straws.

Dabber’s wax is the most convenient for dabbing.

Vape cartridge’s screw onto any vape pen with 510 threads. Cartridges are great for micro-dosing throughout the day.

I’m still auditioning hemp-derived CBD makers. Here in the Austin Texas area we have Ziggy’s Naturals.

Medical Marijuana Accessibility

It’s rare that I see reviews address the accessibility of devices. Every vaporizer I’ve used requires 5 quick button clicks to turn them on and off. This interaction is not so accessible. Grinders often have fine threads that are difficult to line up and clog quickly. Companies need to be more attentive to disability. I long for someone to take disability and accessibility seriously in their design, marketing, packaging, and customer support. Cannabis is medicine, after all.

Every Day Coping: What’s in your sensory kit? #AskingAutistics

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.

An Arcteryx Maka 1 fanny pack in a green-ish brown color rests atop a fuzzy pink pillow. The front of the belly bag has a colorful bear shaped patch affixed with velcro. A beaded stim loop and its little carry bag are attached to a zipper pull. A length of yellow shock cord is attached to another zipper pull. The bag has two horizontal zippered pockets.
The largest of the two pockets contains a blue beanie hat, a black sleep mask, sunglasses in a microfiber slip case, and an assortment of office supplies (pen, pencil, razor, black marker, field notebook, field wipebook).
The smaller pocket opens to reveal a white AirPod case, a black Vibes case, and some other things not visible in the picture.

The bear patch is from BalanceExplore.

The following are things I use to manage overwhelm, conserve spoons, and get through each day. With the exception of the noise-cancelling headphones and the bluetooth sleep mask, they all reside in the belly bag. These are tested in the field of my disabled and autistic life. While attempting brevity, I’ll describe how each fits into my flow.

Contents:

  • Foam Ear Plugs
  • Vibes Ear Plugs
  • Noise-cancelling Headphones
  • AirPods
  • Sleep Mask
  • Bluetooth Sleep Mask
  • Sunglasses and Light-reactive Glasses
  • Beanie Hats
  • Stim Toys
  • Tile Trackers
  • The Three Roles of the Belly Bag
  • Zipper Hoodies

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 Sennheiser Momentum 2.0 Wireless headphones that I received as a gift from work (thanks Automattic). For more affordable options, check out Wirecutter’s recommendations.

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

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.

Source: 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, cover my ears, and provide gentle, even pressure to my scalp.

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. Smartwool, a slightly longer PhD Ultra Light would suit me fine.

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

I make my own 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.
Another view of the stim loop resting on a green cutting mat with a white ruled grid.

I use a length of light shock cord as a zipper pull. The stretch is stimmy goodness. I ran the cord through a piece of rubbery tubing. I enjoy the texture and the tug of this simple stim.

A yellow shock cord with rubber tubing attached to a zipper pull of the belly bag. My finger pulls the cord to demonstrate the stretch. A fuzzy pink pillow is in the background.

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.

They have to be replaced each year, which gets expensive. Tile is starting a subscription plan to make yearly replacement more affordable, but they still ain’t cheap.

The Three Roles of the Belly Bag

Sensory Coping

The principal role of my belly bag is to keep my sensory coping kit at hand wherever I am.

  • phone (music, noise generator, breathing bubble, guided meditation)
  • AirPods (sensory management in a soundscape of my choosing, wishlist: AirPods with noise cancellation)
  • Vibes earplugs (sound isolation)
  • foam earplugs (sound isolation)
  • sleep mask (light isolation)
  • sunglasses (light isolation)
  • moisturizer (psoriasis maintenance)
  • lightweight hat (sensory management)

Throw in a cane and my big noise-cancelling over-the-ear headphones, and I’m good (enough) to go.

Cognitive Net

The secondary role of the belly bag is to augment my memory and be a part of my cognitive net. Belly bag is my toolbox for maintaining my stack and remembering what the heck I was just doing. Chronic pain is distracting. I lean on my net to help me through autistic burnout and fibro fog. With these tools and my phone, I can generate the lists, tables, labels, and badly drawn sketches that help me get stuff done despite pain and gravity poisoning:

Phone slip pockets are a must-have feature for me. When your phone is assistive and augmentative cognitive net, retrievability in the moment is important. The Maka 1’s slip pocket is a bit tight due to my card stuffed wallet case, but the holstering interaction lost friction as the bag and I found a rhythm. Any phone smaller than an iPhone 7+ bearing a crowded wallet case (pretty much everything?), will fit fine.

These simple things keep me organized and conserve spoons.

Toolbelt

The final role is to be the helping hand that has ready the tool I’m about to need—a maker’s apprentice, on a belt, that knows my flow.

  • Multitool with scissors, tweezers, nail file, and bottle opener. That’s all I need in a multitool for most occasions. I currently use a Leatherman Style CS.
  • tail switch flashlight (currently a ThruNite T10)
  • Olfa 9mm SAC-1 stainless steel graphics knife (I love Olfa Silvers)
  • Mini Bic lighter
  • 6’ tape measure
  • alcohol prep pads (for Wipebook cleaning, port and connector cleaning, and adhesive prep)
  • microfiber cloth (Wipebook cleaning, eyeglass cleaning, screen cleaning)

I’m always tinkering, and these are the very useful things I need most often. Small and practical, they cover the quiet needs of the every day: opening bottles of cold sparkling water, snicker snacking through packing tape and zip ties, lighting candles, peering into cramped utility spaces, taking measurements for the next project in the Casita remodel, cleaning lenses, making templates.

Zipper Hoodies

I’ll roam again from the confines of the belly bag to mention an important component of my sensory management: hoodies. I like soft cotton and microfleece hoodies with zipper fronts, ample hoods, and plenty of pockets. I live in hoodies. I recede into their comforts. They provide sensory insulation.

My current hoodies are the SCOTTeVest Cotton Hoodie and Microfleece Hoodie. The SCOTTeVest hoodies cover my requirements:

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

And some of my nice to haves:

  • Top-drop pockets
  • Thumb holes in the cuffs
  • Too many pockets
  • Eye mask built into the hood
  • YKK zippers

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.

What’s in Yours?

That’s my sensory kit. What’s in yours?

Do most autistic people want a cure? No, survey after survey shows that most do not want a cure. Most are happy being autistic. They would like lives that are adapted so that they cope with the noise and chaos of the surrounding world in better ways. Society insists on making education, healthcare etc into a sensory hell, and we have to navigate it. Headphones, sunglasses, different clothing, etc can make a big difference. That’s really cheap to achieve for a lot of us, with a small budget from a provider. Hold that thought….that it’s really cheap to achieve for a lot of us ….because it is. If you know what you’re doing. If you ask the autistic person what helps, after having autism training from autistic people, so you know your subject. If someone really wants a cure for autism (rather than the pain they’re put in by others), fair enough.

Source: Ann’s Autism Blog: Let’s look at why “Autism is the most expensive disability” is untrue.

Straws, Neurodiversity, and Disability

As a society, we are far too quick to write off the concerns of marginalized groups as insignificant or inconvenient.

Source: There’s an unexpected downfall to banning plastic straws. Here’s what to consider.

When disabled people tell you what’s up, listen. Design and policy are tested at the edges. Thinking you can solve a complicated accessibility issue you’ve never previously pondered in the span of a Twitter thread is ableist, dismissive, and condescending. We live this. We live the medical ableism, medical misogynymedical racism, medical traumapolitics of resentment, behaviorism, and inspiration porn. We know how accessibility degrades to accommodation degrades to forced intimacy, resentment, exclusion, and shame.

Forced intimacy is a cornerstone of how ableism functions in an able bodied supremacist world. Disabled people are expected to “strip down” and “show all our cards” metaphorically in order to get the basic access we need in order to survive. We are the ones who must be vulnerable-whether we want to or not-about ourselves, our bodyminds and our abilities. Forced intimacy was one of the many ways I learned that consent does not exist for my disabled asian girl bodymind. People are allowed to ask me intrusive questions about my body, make me “prove” my disability or expect me to share with them every aspect of my accessibility needs. I learned how to simultaneously shrink myself and nonconsensually open myself up as a disabled girl of color every damn day.

Source: Forced Intimacy: An Ableist Norm | Leaving Evidence

What people don’t understand with bans like this is that having to ask for a plastic straw puts an unfair burden, and scrutiny, on people with disabilities. They should not have to prove a medical need or even disclose their disability status when having a fun night out with friends. This is not hospitality.

Source: Why Disabled People Need Plastic Straws – Eater

Instead of negating and speaking over us…

Listen to lived experience. If you consider yourself a liberal, if you care about social justice, get structural, get social, get equity literate, and listen. Excerpted below are perspectives from autistic and disabled people and our allies.

Suddenly Leo jumps up from the table again and says to his father, “Green straw?” It is not yet time for his first green straw of the day, but he will get one before the school bus pulls into the driveway— one of tens of thousands of wide, bright green Starbucks straws that Leo has used over the years for the purpose of stimming (self-stimulation), one of the things that autistic people do to regulate their anxiety. They also clearly enjoy it. When nonautistic people do it, it’s called fidgeting and it’s rarely considered pathological.

A red straw from Burger King can occasionally fit the bill, or a blue one from Peet’s. Clear straws from Costco just don’t cut it. But a green straw from Starbucks is Leo’s Platonic stim. If Shannon allowed him to do so, he would take a green straw to bed with him, or even better, a pair— one between his lips and the other in his toes. He would stim in the bath, on the toilet, and jumping on the trampoline.

Source: Silberman, Steve. NeuroTribes: The Legacy of Autism and the Future of Neurodiversity (p. 48). Penguin Publishing Group. Kindle Edition.

It’s not easy or pleasant asking for help in public spaces like restaurants, because you never know what attitudes you’ll encounter: indifference, pity, or outright rejection. I don’t see these types of help as special treatment or inspirational for someone to surreptitiously post on social media as feel-good clickbait; they’re simply examples of excellent hospitality.

Starbucks’s announcement — and the news that Vancouver and Seattle recently banned plastic straws, with other cities, like New York and San Francisco, contemplating proposals — struck a raw nerve with me for several reasons (and I won’t even get into the problems of recyclable plastics and greenwashing):

1. Plastic straws are considered unnecessary items used by environmentalists as a “gateway plastic” to engage the public on a larger conversation about waste. According to Dune Ives, executive director of the Lonely Whale Foundation, “Plastic straws are social tools and props, the perfect conversation starter.” But one person’s social prop is another person’s conduit for nutrition. It’s as if people who rely on straws — older adults, children, and disabled people — don’t matter and that our needs are less important than the environment. I feel erased by these attitudes.

2. Plastic straws are ubiquitous, whether we like it or not. Once you have something that provides access, it is difficult and harmful to take it away from a marginalized community that depends on it. I live in a world that was never built for me, and every little bit of access is treasured and hard-won. Bans on plastic straws are regressive, not progressive.

The plastic straw ban is symptomatic of larger systemic issues when it comes to the continual struggle for disability rights and justice. The Americans with Disabilities Act (ADA) turns 28 next week, on July 26, and yet people with disabilities continue to face barriers at eating establishments. The ADA is considered by many small businesses (and the National Restaurant Association) as a source of frivolous lawsuits brought by greedy lawyers and clients. Ableist attitudes that cast disabled people as “fakers” or “complainers” obscure the very real and painful experiences of not being able to eat and drink freely.

As demand increases for alternatives to plastic, so do the voices from the disability communitysharing their concerns about how these bans will create additional labor, hurdles, and difficulties. On social media, many disabled people have been sharing their stories and keeping it 100 percent real. I observed and experienced all sorts of microaggressions and outright dismissal of what disabled people are saying online.

This is the experience of living in a world that was never built for you: having to explain and defend yourself while providing infinite amounts of labor at the demand of people who do not recognize their nondisabled privilege. There are days when I want to put this on repeat: “Believe disabled people. Period.” I refuse to apologize or feel shame about the way my body works and how I navigate in the world. Everyone consumes goods and creates waste. We all do what we can to reduce, reuse, and recycle. We should recognize that different needs require different solutions. I’m not a monster for using plastic straws or other plastic items that allow me to live, such as oxygen tubes.

What people don’t understand with bans like this is that having to ask for a plastic straw puts an unfair burden, and scrutiny, on people with disabilities. They should not have to prove a medical need or even disclose their disability status when having a fun night out with friends. This is not hospitality.

Source: Why Disabled People Need Plastic Straws – Eater

Every few months, another city, state, or country announces that it’s banning the use of plastic straws. These policies are meant to lead the way in removing plastics from the ocean, but, according to our best estimates, straws are not a major source of marine plastic pollution, and such laws are unlikely to have a noticeable affect on the levels of plastic entering our waters. The proposed bans do, however, have the unintended effect of making restaurants less accessible for many disabled people, while revealing the ableism embedded in far too much consumer-based environmentalism.

There’s a better way. Instead of bans, we should shift all our use of disposable plastics from opt-out to opt-in. At the same time, let’s recognize the limits of focusing on consumer choice. Want to reduce plastics in the ocean? Make the producers pay for their waste.

For Peters and many other disabled people, the fixation on banning straws feels arbitrary. As I wrote for Pacific Standard last year, straws provide a simple, accessible means for many disabled people to drink. My son, who has Down syndrome, is one of them. His mastery of drinking through ubiquitous plastic straws makes every restaurant and gas station a place where he can a drink without worrying. Straw bans erode that easy accessibility. Moreover, every time people like me raise the importance of plastic straws, we get bombarded with well-meaning attempts to inform us about the exciting new world of metal, glass, bamboo, paper, and compostable straws. There’s a kind of implicit dismissiveness behind the idea that people who rely on plastic straws for hydration might not ever have considered alternatives. For my son, as with many others, plastic straws offer a remarkable combination of affordability, tensile strength, and flexibility. While some disabled people can use or even prefer harder reusable straws, metal, wood, or glass straws can be dangerous, uncomfortable, or ineffective for others. Compostable straws made of vegetable matter have a similar feel as standard plastic straws (and my son likes them), but they are vastly more expensive than plastic straws and raise concerns about food allergies.

There’s a real tension between consumer-based environmentalism, and the need to maintain and expand accessible options for disabled consumers, which often involve plastic. It’s good to raise awareness about waste, but I’ve been struck over the last year by how often conversations around straws quickly grow hostile. People are so eager to tell me about other kinds of straws, assuming we haven’t tried or are woefully uninformed. I wish these people might learn to trust that disabled people, as disability scholar Kim Sauder recently tweeted, generally know their needs and how to meet them-unless they ask for advice.

Let’s put our efforts where the money is, rather than shaming disabled consumers who just want an accessible drink of water.

Source: Banning Straws Won’t Save the Oceans – Pacific Standard

Here’s the problem: I need every restaurant and gas station in America to have straws, preferably plastic and bendy. My son, a 10-year-old boy with Down syndrome, has never quite mastered that complex series of motions to drink consistently from the lip of the cup. What he can do, though, is curl his tongue around a straw and create appropriate suction to drink, which was quite the triumph when he first learned it. A whole world of easy hydration opened to us. My family is not alone. Straws are a wildly successful example of assistive technology for millions of people with diverse abilities, all of whom are best served by ubiquitous straws. If Grenier gets people to stop sucking, what about my son?

There’s a deep tension between environmental consumerism and accessible consumerism. Many disabled people have come to rely on prepackaged foods, single-serving products, plastic cups, and yes, straws. On the other hand, there are those in the environmental movement who use shame to push people toward better individual decisions for the environment. Last year, a Twitter user named Nathalie Gordon posted a picture of plastic wrapped pre-peeled oranges, taunting: “If only nature would find a way to cover these oranges so we didn’t need to waste so much plastic on them.” It rapidly went viral and today has over 100,000 retweets and likes.

But for many disabled people, these pre-peeled oranges were wonderful. Kim Sauder, who is both disabled and a disability studies scholar, wrote a retort to Gordon, explaining, “As a person with limited hand dexterity, I look at this and see an easier way to eat healthy food.” Sauder, over email, told me that variations on the orange story keep re-appearing; recently, she heard folks yelling about plastic-wrapped peeled avocados. For her, straws and the #stopsucking campaign are part of the same pattern. As Sauder says, “The battles that environmentalists choose to wage are small and focused on products whose removal disproportionately affects disabled people.” Sauder understands why focusing on small things, especially those perceived as unnecessary, is easier than looking at the big picture. Still, she’d like us to focus on “the overall use of plastic,” even though that’s a tougher and more ambitious conversation. We need, Sauder says, to emphasize “systemic change rather than a perceived small sacrifice.”

People advocating for more environmentally friendly systems need to think about the ways that diverse people access the world. Before you eliminate a consumer system for ecological reasons, remember that many folks rely on convenient technologies, however environmentally unfriendly. That means persuasive messaging must avoid shaming those who need the technology. Because I want us to all stop sucking, but mostly, I want my son to have a drink.

Source: Saving the Oceans With My Son and Adrian Grenier – Pacific Standard

Disabled people who shared their concerns, frustrations and criticisms of the straw ban on Twitter, many attempting to patiently explain why they are a necessity for some, have received hostility from many and support from few. The ‘just curious’ want to know why the alternatives aren’t good enough for disabled people and despite the abundance of articles, handy info graphics and tweets addressing that, seem incapable of finding the information out for themselves. Or perhaps it’s because those aren’t detailed enough and don’t explain exactly what is ‘wrong’ with the disabled person that prevents them from drinking without a straw.

If you write policy as if disabled people do not exist and as if discrimination against disabled people does not exist, then you almost certainly write discrimination into your policy.

Non-disabled people have questions and it is my job to answer them. This unasked for, unpaid position is one I was given when I became disabled. One moment they are curious about why some disabled people need straws, the next it will be something else.

If you spend time on social media, you may have noticed disabled people who don’t use straws understand why some disabled people do – without knowing the specific reasons.

Though the specifics of our situations differ in important ways and are affected by components of our identities beyond disability, the experience of being disabled in a society that excludes, devalues, demeans, objectifies, dehumanizes, degrades and pities disabled people, is something we all have some familiarity with. Our struggle against it is what unites us, not our particular medical diagnosis or accessibility needs.

Source: Curiosity: Vancouver’s Straw Ban – Another Barrier and Another Excuse For Non-Disabled People to Shame, Marginalize, Interrogate and Demonstrate They Don’t Care About Discrimination Against Disabled People | mssinenomineblog

A soggy paper straw increases the risk of choking. Most paper and silicone alternatives are not flexible, and this is an important feature for people with mobility related impairments. Metal, glass and bamboo straws present obvious dangers for people who have difficulty controlling their bite, as well as those with neurological conditions such as Parkinson’s. Some disabled people use straws when drinking coffee or eating soup, yet most of the alternatives, including the leading biodegradable straw, are not suitable for drinks over 40°C. In addition, re-useable straws in public places are not always hygienic or easy to clean.

Source: Guest Blog: Action on plastics shouldn’t make life suck for disabled people – Greenpeace Canada

But making disabled people pay for something that’s available to everyone else for free is a type of tax. While it’s not necessarily an expensive tax, these types of things add up, and implementing a policy that makes the simple act of drinking prohibitive to certain groups sets a bad precedent.

“We need to make straws accessible to those who need them,” she says. “Don’t turn them into a medical item, which will negatively affect availability and lead to increased expense and stigma.”

What makes the entire debate over straws that much more confusing is the fact that disposable straws don’t actuallycontribute much to the abundance of plastic waste relative to other items in the ocean. So by proposing a ban on them, we’re asking disabled people to sacrifice a lot in order to gain just a little in the fight for environmental health. And by doing that, we’re demonstrating a frightening lack of empathy.

As a society, we are far too quick to write off the concerns of marginalized groups as insignificant or inconvenient.

Source: There’s an unexpected downfall to banning plastic straws. Here’s what to consider.

“We’re really kind of vilifying people who need straws.” Other environmentalists aren’t sure that banning straws is gonna do much, and point out that banning straws is not an entirely rigorous approach to global systems change, considering that a widely cited estimate for the magnitude of the problem was, umm, created by a smart 9-year-old.

All this to say: The straw is officially part of the culture wars, and you might be thinking, “Gah, these contentious times we live in!” But the straw has always been dragged along by the currents of history, soaking up the era, shaping not its direction, but its texture.

The invention of American industrialism, the creation of urban life, changing gender relations, public-health reform, suburbia and its hamburger-loving teens, better living through plastics, and the financialization of the economy: The straw was there for all these things-rolled out of extrusion machines, dispensed, pushed through lids, bent, dropped into the abyss.

You can learn a lot about this country, and the dilemmas of contemporary capitalism, by taking a straw-eyed view.

Source: How the Disposable Straw Explains Modern Capitalism – The Atlantic

“We’re really kind of vilifying people who need straws or forgetting about them completely — let’s be honest — in encouraging shaming people who are asking for them.”

“Where do I get that straw? Are straws then going to be something you buy at a medical supply store? And as soon as you do that they become more expensive and they become less accessible,” says Peters, on a fixed income of disability benefits she estimates at $1,100 per month.

“You’re just adding that cost to me.”

Source: Anti-straw movement isn’t considering people with disabilities, advocates say | The Star

I already have a difficult time with environmentalism being the only global issue that some people fall on their sword for, especially given the many humanitarian crises around the world. (Do you think talking to me about plastic straws makes you look woke?) But truly addressing waste in the environment by disabled and marginalized people may require looking into the expansion and affordability of services that are made available to disabled people.

Environmentalism can be used as a shield. Kind of the “All Lives Matter” of advocacy but true activists know that it requires more than simply recycling plastics or banning straws, but racial, social, economic, and disability justice to make true strides to environmental stewardship. People for whom it is a struggle to live day to day aren’t going to invest emotional, financial or logistical resources to thinking about the next 100-200 years. So, sorry, you may have avoided taking sides on poverty, the minimum wage, healthcare or Black Lives Matter, but you’re going to have to care about people that are different from you. The environment requires it.

Source: Being Disabled isn’t Eco Friendly: Get Off Our Backs and Put In The Work — Crutches & Spice

Mentioning the effect that banning straws might have on disabled people has become a dangerous proposition. On social media, the anti-straw brigade lectures about alternatives disabled people are already aware of or shames disabled people for needing to drink. “Quit harming the environment because you can’t take care of your own needs,” said one helpful commenter. “Sorry, the trouble cleaning and inconvenience still doesn’t trump the damage caused by plastics,” said another.

Picking a fight over straws may seem nonsensical, but the larger low-waste and zero-waste movements, which tend to be overwhelmingly white and nondisabled, frequently single out products that benefit the disability community, like straws or pre-cut fruits and veggies, as a wasteful use of natural resources. It’s a two-part logic: One, the planet’s resources are limited and growing scarcer, and two, the way to control that is by cutting back on the use of nonrenewables. This does little to explore which humansare using the majority of resources on Earth and where the real choke points of waste lie. And it feeds insidious attitudes about who should be “allowed” to use the resources that are available.

The “green lifestyle” can come at the expense of disabled people who are often already living low-impact lifestyles by default. (After all, disabled people can be twice as likely to live in poverty as nondisabled people.) When environmentalists promote cutting certain products out of our lives, things that are useful for disabled people are often first on the chopping block.

The idea that disabled people are taking up space and resources they don’t deserve feeds the vitriol aimed at those who voice concerns about inclusivity and zero/low-waste causes. It also contributes to rhetoric around physician-assisted suicide, abortion for disability, healthcare rationing, and other fraught topics.Embedded in all of them is the belief that disabled lives are not worth living, and accommodating disabled people is not worth the resources. The devaluation of disabled people deprives the environmental movement of allies, including those who agree that the planet is in a state of crisis and urgent action is needed. Disabled people, particularly disabled people of color, are in many ways canaries in the coal mine because environmental injustice hits their communities first.

Rather than being considered burdens, disabled people should be viewed as incredibly valuable resources for conversations about leading better lives. A lifetime of having to hack, adapt, and subvert a society that says you don’t belong provides a considerable array of skills for rethinking the way we use natural resources.

Source: Starbucks’ Plan to Ban Straws Will Harm Disabled People | Bitch Media

The straw ban really is visceral. It really hit me in the gut because this is about a daily activity: drinking. If that was threatened by, if your right to drink and eat was threatened, I mean, it’s very real. And I think what’s really-and it’s not exaggerated, right-I think it’s this is what’s really sad is that people think, “Oh, don’t worry about it.” I’ve had so many non-disabled people online tell me, “Don’t worry. You know, these bans, these exemptions, you’re gonna be fine, you know? There’s no way you would be denied a straw.” And I’m just like, if you just kind of understood what it’s like to be disabled and how every day, even with an apparent visible disability like mine, you are constantly scrutinized. And the microaggressions are just so real that people just assume that everything is going to be OK and that we should all-pun intended-suck it up for the greater good. And I think that’s what’s really missing is that the conversation has always been about if you’re not with us, you’re against us. And we’re saying this is just another erosion in our way to participate in public, in our ways to be part of society.

Some of my friends online have already shown me these little signs posted at restaurants that are really passive-aggressive about, “We’re not serving, we’re not providing any straws anymore because we care about the environment. Thanks anyway!” People are actually being really proud of not providing straws, and that, to me, is like another sign that you know- Let’s say, people saying, “Straws are bad,” and they say, “Oh, people with disabilities should bring their own straws.” So let’s say they bring their own straws and start using them? In this kinda climate, you can imagine the kind of like possible harassment or criticism they’ll get just for using a straw in a public space. If you look at Santa Barbara, where they have one of the most punitive bans with really steep fines and even jail time for establishments that provide plastic? I mean that’s really where you’re creating conditions that send a message to people with disabilities, older adults, all kinds of people that may need straws that your way of life is not welcome. Your way of life is not normative. And what do you do with that? You just basically are marginalizing us, shoving us away, and telling us that we don’t belong in the same place as you do.

And this is you know, 18 years after the American with Disabilities Act, after decades of disability rights activism that really fought against segregation and against the days where there were laws called Ugly Laws. So I’m not sure if you realize this, but in the old days, there were laws that disabled people and all kinds of people were not allowed in a public space because they affected people. Just their mere existence made people uncomfortable. And I really do see a connection between these straw bans and these kinds of historic laws that discriminate.

Source: 051: Alice Wong Says #suckitableism — boss barista