Inside the Little Plastic Castle

Patrice Jetter is a force of nature. She’s joyous in her clothes and her hobbies (sewing, painting, model railroading) and her confidence in small acts of kindness. She found love with Garry Wickham and they want to marry. They can’t afford to because they’re both disabled. Marriage would end their access to US Federal health insurance and income support.

( Why I loved it and trailer )

Find in library • DRM-free audiobook • BARD

As I hoped back in December, last month I found enough brain to tackle An Immense World by Ed Yong. I was convinced by pauraque’s extensive summary and review, and the 24 days I spent reading were a pure delight. Ed Yong is a great narrator: he fluently pronounces the Neo-Latinate species names as well as the international assortment of human researchers. He somehow manages not to giggle at his own (frequent) jokes.

He wildly succeeds at explaining the distinctive sensory worlds of many of our planet’s inhabitants. Along the way, he explores how scientists design experiments to pin down how, for example, a scallop sees or a leafhopper senses vibrations. He tells the truth that our current understanding is not necessarily the whole answer — that science means change. So much of the current state of the art began as theories mocked by the scientific establishment.

Yong is keenly aware of human as well as animal variety. When addressing the senses, he fluently acknowledges that not humans all have a standard complement—for example, his researchers are described as sighted when that’s relevant. He consciously seeks out women and non-binary researchers, as explained in his 2018 Atlantic article "I Spent Two Years Trying to Fix the Gender Imbalance in My Stories -- Here’s what I’ve learned, and why I did it.".

Most importantly, he’s such a good writer. He clearly loves his subject, and he plays with formal and informal registers. He provides enough detail to enthrall while lightly alternating between technical explanations and emotional delights. He organizes the books by sense, and each one almost stands alone. It helped that I gave myself permission to read for enjoyment, not trying to remember the details because there is no test. I'm looking forward to rereading it.

I do recall some stunning facts:

• Scallops have many eyes — from a dozen to more than 200.
• Owls have asymmetrical ears, enabling them to locate sounds both horizontally and vertically.
• Some creatures use the Earth’s very weak electromagnetic field to navigate—but we don’t know how. The signal is so subtle that it’s not contemporaneous: the whales, birds, and turtles must travel several miles before they can know if they’re headed in the right direction.

He starts with dogs, guaranteeing sympathy from half his readership. (I was charmed by references to his own Corgi pup, Typo.) In this 350-word excerpt, he introduces the canine olfaction expert, Alexandra Horowitz, and her dog Finnegan:

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I appreciate the eloquent exploration of the social model of disability by Sunaura Taylor and Judith Butler as they stroll through San Francisco, with bonus thrifting (on YouTube no CC) and transcript. It’s an excerpt from Astra Taylor’s EXAMINED LIFE, a documentary featuring 9 philosophers walking and talking.

Someone on Ask.Metafilter needed book title text that punned on kitchen topics. Snarky MeFites delivered better than GrubHub, UberEats, and DoorDash combined. Amuse bouche:

• A Connecticut Yankee in King Arthur's Flour
• The Wings They Carried
• Finnegan's Cake
• A Distant Mirepoix
• Pho of Flying
• All Quiet on the Western Bundt
• Teff in Venice
• The Adventures of Tom Yum Sawyer
• The Island of Doctor Merlot
• Of Rice and Naan

I still haven’t seen Barbie yet, but I’ve enjoyed disabled people’s commentary!

Dr Therí A Pickens (on Medium) declares Disability Access in Barbieland Holds Up a Sober Mirror to Our World
archived

Poet Johnson Cheu explains why Becky Declines Barbie’s Dinner Invitation both print and audio. He’s referring to 1997’s Share-A-Smile Becky who comes with her own pink wheelchair. Travel blogger Karin Willison reviews all of the disabled Barbie-adjacent dolls.

My medication alarm system combines a very low tech device—a four chamber pill box—with my iPhone’s system alarms. I set a daily repeating alarm labelled with the pill chamber number.

The key innovation is that, instead of a built-in alarm, I use a song. Sometimes it takes me a while to reach my pillbox—the length of the song doesn’t let the task slip from my mind. (It also is less annoying than a repetitive ding dong!) If I don’t snooze the song, iOS repeats it at least three times — fifteen minutes of "Take your pills, already!"

I choose instrumental songs, so as not to impose my lyric tastes on random strangers. I switch to different songs every season, since I can become ear blind to the same tune after too many repetitions.

My pharmacy sold me this 85 cm x 35 cm x 25 cm4-chamber pillbox in rigid plastic. Each chamber has a hinged lid, labelled in braille. There’s a lock on the end that my arthritic fingers have no trouble releasing.

And of course there’s one more set of pills I have to take as I climb in to bed—that pillbox rests on my phone charger, which so far has been a foolproof reminder since I don’t want my baby brain to go unfed overnight.

What's your system like?

Stumbled on a 27-year-old email which reminded me of bipedal joy in winter--walking with two canes.

It's been snowing since the middle of the night, and I'm on the "improving" slope of a remission. A lifetime spent in the northern climes prepares me for the joys of a brief walk in the snow. I swaddle myself warmly and comfortably -- minimum two layers everywhere. Thank heavens for Polartec, the homeopathic weather fighter: fluffy and light.

At 11 am the sky and the ground and the trees and the rooftops are every color white. Getting down my precipitous driveway is scary until I relearn the snow-shuffle, using my canes as balance points. At the street, I feel alarmingly tall -- what a long way to fall. The wind sighs like the seals on a thousand refrigerator doors. Terrorist snow pellets sneak in to sting my face, uncaring, random. When I stop to raise my eyes to the horizon, I travel back to a time without artificial lighting. That mysterious fog has abandoned the 19th century etchings to erect barriers half-a-block away at every point of my compass.

Tinges of snow color every sight, bringing unity and grace to the accidental architecture of suburbia. Visual static spills over into the auditory, the street is calmed to hissing catatonia. Though level ground is almost automatic, every vertical shift requires planning. Is that foot secure? Will that cane slide when I swing through? Ten minutes out, my feet begin to stray. The toes and heel and tender edges no longer recognize the cozy insides of my boots. The braid of ankle and knee and hip and shoulder is fraying: time to return. My bozo legs missed their yard-long orange shoes for the final ascent over the lawn. (They might have provided better traction.)

Inside again, I stomp five times and shed the snow. I've draped my outer layers in the kitchen, which quickly fills with a vapor familiar from tents and apartments and warming shelters and houses. I've time travelled by foot back to steam radiators and glass entryways, steaming subway tunnels and frozen lonely bus stops, the searing desert of forty below and the cheerful mud soup of April.

Since I know many of my readers are autistic or otherly neurodiverse, I'm boosting my own post over at access_fandom.

Academic Sean Yeager wants to discuss experiences of time and narrative in science fiction. Get paid! Participants will be compensated $100 for 60-90 minute talk re: their experiences of time with an openly autistic interviewer.

Another great column from s.e.smith, who goes deep into the flock of starlings metaphor. The topic is the surge of people newly disabled by post-acute sequelae of SARS-CoV-2, better known as Long Covid. While disability elders can see this as a chance to mentor the newbies, it’s also a chance for us to see the world anew:

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On 8 July, I got a cortisone shot in my middle finger, in hopes of warding off surgery for yet another trigger finger. The PT handed me an oval-8 splint to wear that would help the synovial sheath swelling to calm down.

In the mail today, I got a notice from my pharmacy benefit manager (PBM) one of four profit-making entities that I buy health care from. This EOB notice comprised six sheets of office paper, mailed flat in a 9"x12" catalog envelope with a custom window. On top was the single-sided cover sheet with my and their addresses (to fit the window) as well as a boxed definition of "explanation of benefits" (EOB).[note 1] Next was another single-sided sheet with that actual explanation (details below). Then there are four more pages printed both sides explaining how to appeal (in type too small for me to read). These six sheets were mailed unfolded in a catalog envelope from Connecticut (although Navitus is headquartered here in Madison). For personal mailings, six sheets folded in an envelope costs $0.74 — sending flat sheets increases the cost 230%. Commercial postage is less but too confusing for me to calculate.

In the end, the EOB informed me that I might need to pay $1.20 for the oval-8 splint — more than it cost to send me the notice.

I know that many, perhaps most EOBs document important (nay, oppressive) amounts of money. Yet and still, this system is borked.

Players in my health care team, or, places to duplicate info and mishandle data:

1. Health plan (we pay $890/month private insurance) https://www.deancare.com [note 2]
2. Clinic — almost all my care and equipment comes from staff who work for https://SSMHealth.com They get paid by 1, 5, and 6
3. Small mental health group, home to the "in-network" APNP who deals with my psych meds. https://madisonpsychiatricassociates.com Paid by 1, 5, and 6
4. Family-owned and -run pharmacy, which gets money from 1, 5, and 6 https://www.ipcrx.com/pharmacy-profiles/2018/neuhauser-pharmacy-madison-wi
5. Navitus the pharmacy benefits manager, https://medicarerx.navitus.com co-owned by SSMHealth and Costco. 1 pays them administrative fees to pay 2, 3, and 4
6. Medicare (US government insurance, $170 monthly deducted from our retirement checks) and the only non-profit. Pays most of the bills for 2, 3, 4, and 5.

Note 1: (I’m not going to attempt to spell out what an EOB is. A handful of places try to explain in plain language: https://www.carepartnersct.com/wellness/how-read-your-explanation-benefits-eob

Note 2: I’m super lucky that MyGuy spent 20 years working for #1; he does a great job analyzing the EOBs, among many other skills.

This panel is WOW! Three disability justice elders tomorrow!

Wednesday 13 April 2022 6p CT - 7pm ET - 2100 UTC

“The Future of Disability Justice” panel featuring Alice Wong, Leah Lakshmi Piepzna-Samarasinha, and Mia Mingus

Register at https://tinyurl.com/DisabilityJustice22

Presented by Asian American and Asian Resource and Cultural Center at Purdue University. Reg form asks for "Purdue email" but my Pobox.com address worked fine.

DJ background: https://projectlets.org/disability-justice

Wil Sands is a photojournalist, particularly interested in stories that add nuance and complexity to public discourse. He was reporting from a BLM protest in Washington D.C. on 30 May 2020 when a cop shot him in the eye.

( discussion of eye injury )