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

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.

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

The Spectacle of Cruel Laughter

“We can hear the spectacle of cruel laughter throughout the Trump era.”

Source: The Cruelty Is the Point – The Atlantic

That line has been in my head the past couple days.

The cruel laughter of Kavanaugh.

Ford testified to the Senate, utilizing her professional expertise to describe the encounter, that one of the parts of the incident she remembered most was Kavanaugh and his friend Mark Judge laughing at her as Kavanaugh fumbled at her clothing. “Indelible in the hippocampus is the laughter,” Ford said, referring to the part of the brain that processes emotion and memory, “the uproarious laughter between the two, and their having fun at my expense.” And then at Tuesday’s rally, the president made his supporters laugh at her.

Source: The Cruelty Is the Point – The Atlantic

The cruel laughter in response to Trump mocking a survivor.

Tuesday the president of the United States, his crowd cheering him on, mocked a citizen who has come forward to claim herself as a victim: of violence, of misogyny, of laughter itself.

And so Donald Trump has managed to find yet another way to say the quiet thing out loud: This is a moment, for some, in which cruelty and comedy have become indistinguishable. This is a moment in which a vote for a Supreme Court nomination has become a proxy battle in a far greater war-one whose skirmishes, it seems, will be fought through petty jokes and easy mockeries. A moment in which so much comes down to the question of who will get the last laugh.

The cruel laughter from ICE when they drive people to suicide.

“One detainee told us, ‘I’ve seen a few attempted suicides using the braided sheets by the vents and then the guards laugh at them and call them “suicide failures” once they are back from medical,’” the inspectors said in their report.

Source: Inspectors Find Nooses in Cells at Immigration Detention Facility – The New York Times

The cruel laughter from Trumpist family members that shatters your heart.

The sadistic glee directed at everyone not them.

There were the border-patrol agents cracking up at the crying immigrant childrenseparated from their families, and the Trump adviser who delighted white supremacists when he mocked a child with Down syndrome who was separated from her mother. There were the police who laughed uproariously when the president encouraged them to abuse suspects, and the Fox News hosts mocking a survivor of the Pulse Nightclub massacre (and in the process inundating him with threats), the survivors of sexual assault protesting to Senator Jeff Flake, the women who said the president had sexually assaulted them, and the teen survivors of the Parkland school shooting. There was the president mocking Puerto Rican accents shortly after thousands were killed and tens of thousands displaced by Hurricane Maria, the black athletes protesting unjustified killings by the police, the women of the #MeToo movement who have come forward with stories of sexual abuse, and the disabled reporter whose crime was reporting on Trump truthfully. It is not just that the perpetrators of this cruelty enjoy it; it is that they enjoy it with one another. Their shared laughter at the suffering of others is an adhesive that binds them to one another, and to Trump.

Source: The Cruelty Is the Point – The Atlantic

The foolish and destructive sadopopulism of it all.

These are policies that are deliberately designed to administer pain, to add to the total amount of pain in American society.

If you hurt people you create a resource of pain, of anxiety and fear which you then direct against others.

If, in the long run, the way that you govern is by hurting people who don’t mind being hurt because they think other people are hurting worse, what you will tend to do is take the vote away from people who expect more from government, what you will tend to do is try to suppress the vote and keep the vote down to the people who accept that government can do nothing except for administer pain. And then that moves you away slowly from democracy.

Source: Timothy Snyder Speaks, ep. 4: Sadopopulism – YouTube

In conditions of oligarchical impotence, you shift the task of government from doing anything to affirming identity. Government is no longer about doing, government is about being.

What you end up doing as an oligarch is deliberately hurting your own followers and asking them to applaud you.

Source: Timothy Snyder Speaks, ep. 3: What is Oligarchy? – YouTube

The sitcom misogynist plays for cruel yucks.

There’s been a lot of talk, of late, about laughter. Laughter as power. Laughter as luxury. Laughter as empathy. Laughter as beauty. Laughter as philosophy. Laughter as complicity. Laughter as division. The current political moment has been in one way a lesson in how easily jokes can be weaponized: Jokes can win elections. Jokes can insist that, despite so much evidence to the contrary, lol nothing matters. Jokes can contribute to the post-truth logic of things. They can lighten and enlighten and complicate and delight; they can also mock and hate and lie and make the world objectively worse for the people living in it-and then, when questioned, respond with the only thing a joke knows how to say, in the end: “I was only kidding.”

Source: Trump Mocks Christine Blasey Ford; The Rally Loves It – The Atlantic

And the cruel feel closer.

Their cruelty made them feel good, it made them feel proud, it made them feel happy. And it made them feel closer to one another.

Source: The Cruelty Is the Point – The Atlantic

In their stunted normal.

Normalization: The cultural process by which a particular attitude, ideology, or behavior becomes established and entrenched in social life. It’s the cultural process through which we come to expect and accept something as natural and normal.

Source: Donald Trump: The Sitcom Misogynist

But…

Suddenly, even the most powerful people in society are forced to be fluent in the concerns of those with little power, if they want to hold on to the cultural relevance that thrust them into power in the first place. Being a comedian means having to say things that an audience finds funny; if an audience doesn’t find old, hackneyed, abusive jokes funny anymore, then that comedian has to do more work. And what we find is, the comedians with the most privilege resent having to keep working for a living. Wasn’t it good enough that they wrote that joke that some people found somewhat funny, some years ago? Why should they have to learn about current culture just to get paid to do comedy?

Source: The price of relevance is fluency

But in the course of the hour-long set, which was filmed at the Sydney Opera House (Gadsby has also been performing at the SoHo Playhouse, in New York), “Nanette” transforms into a commentary on comedy itself-on what it conceals, and on how it can force the marginalized to partake in their own humiliation. Gadsby, who once considered Bill Cosby her favorite comedian, now plans to quit comedy altogether, she says, because she can’t bring herself to participate in that humiliation anymore. Onstage, Gadsby typically speaks in a shy, almost surprised tone, playing jokes off of an unassuming, nebbishy demeanor. She clutches the mic with two fists and speaks softly, forcing audiences to listen closely to hear her. In “Nanette,” she seems to slowly shed that persona, becoming increasingly assertive and, at times, deadly serious. Her set builds to include more and more disturbing accounts of her own experiences with homophobia and sexual assault, and broader themes of violence against women and male impunity. But for every moment of tension, Gadsby gives her crowd release in a punch line-until she doesn’t. When the jokes stop, the audience is forced to linger in its unease. “This tension? It’s yours,” she says at one particularly upsetting moment, toward the end of the show. “I am not helping you anymore.”

Watching Gadsby, it was impossible not to think of the many women who’ve come forward in recent months with stories of abuse that were years or even decades old. You could consider the #MeToo moment itself as a kind of callback, a collective return to stories that women have been telling one way—to others, to themselves—with a new, emboldened understanding that those past tellings had been inadequate.

Source: “Nanette,” Reviewed: Hannah Gadsby’s Netflix Standup Special Forces Comedy to Confront the #MeToo Era | The New Yorker

Via: Hannah Gadsby on Shame, Power, and Comedy

 

Have you really read all these?: Anti-libraries and Knowledge

No, I haven’t read all of the books I own cover-to-cover. I read a couple books a week all the way through. I strategically skim and search a couple more. A lot can be learned from the introduction and opening chapters of a book, so I habitually download, search, and read samples from the Kindle store. Highlights and notes from all this reading go into DEVONthink and Ulysses.

PDFs, ebooks, and web archives also go in DEVONthink, where I tag everything. DEVONthink’s AI augmented search helps me find connections among sources, including ones I haven’t read yet.

All of the partially read and unread text I collect and curate form an anti-library, one that has been useful in my writing and research on neurodiversity, disability, tech ethics, and education.

Ulysses and DEVONthink are my zettelkasten, anti-library, research database, cognitive net, and thinking space. No, I haven’t read everything that they and my bookshelves hold, but I’m constantly discovering, rediscovering, and connecting ideas while creating the conditions for serendipity.

Someone walks into your house and sees your many books on your many bookshelves. Have you really read all these? they ask. This person does not understand knowledge. A good library is comprised in large part by books you haven’t read, making it something you can turn to when you don’t know something. He calls it: the Anti-Library.

I remember once in college, the pride I felt about being able to write an entire research paper with stuff from my own anti-library. We all have books and papers that we haven’t read yet. Instead of feeling guilty, you should see them as an opportunity: know they’re available to you if you ever need them.

This is the mark you must aim for as a researcher, to not only have enough material - and to know where the rest of what you haven’t read will be located - on hand to do your work. You must build a library and an anti-library now… before you have an emergency presentation or a shot at a popular guest post.

Source: The 5-Step Research Method I Used For Tim Ferriss, Robert Greene, and Tucker Max

Some questions are only asked by people with a fundamental misunderstanding. The friends who walk into my office and ask, “have you read all of these” miss the point of books.

In his book, The Black Swan, Nassim Taleb describes our relationship between books and knowledge using the legendary Italian writer Umberto Eco (1932-2016).

The writer Umberro Eco belongs to that small class of scholars who are encyclopedic, insightful, and nondull. He is the owner of a large personal library (containing thirty thousand books), and separates visitors into two categories: those who react with “Wow! Signore professore dottore Eco, what a library you have. How many of these books have you read?” and the others—a very small minority—who get the point is that a private library is not an ego-boosting appendages but a research tool. The library should contain as much of what you do not know as your financial means … allow you to put there. You will accumulate more knowledge and more books as you grow older, and the growing number of unread books on the shelves will look at you menacingly. Indeed, the more you know, the larger the rows of unread books. Let us call this collection of unread books an antilibrary.

Taleb adds:

We tend to treat our knowledge as personal property to be protected and defended. It is an ornament that allows us to rise in the pecking order. So this tendency to offend Eco’s library sensibility by focusing on the known is a human bias that extends to our mental operations. People don’t walk around with anti-résumés telling you what they have not studied or experienced (it’s the job of their competitors to do that), but it would be nice if they did. Just as we need to stand library logic on its head, we will work on standing knowledge itself on its head.

A good library is filled with mostly unread books. That’s the point. Our relationship with the unknown causes the very problem Taleb is famous for contextualizing: the black swan. Because we underestimate the value of what we don’t know and overvalue what we do know, we fundamentally misunderstand the likelihood of surprises.

The antidote to this overconfidence boils down to our relationship with knowledge. The anti-scholar, as Taleb refers to it, is “someone who focuses on the unread books, and makes an attempt not to treat his knowledge as a treasure, or even a possession, or even a self-esteem enhancement device — a skeptical empiricist.”

My library serves as a visual reminder of what I don’t know.

Source: The Antilibrary: Why Unread Books Are The Most Important