jesse_the_k | Entries tagged with memoir

I go to this annual celebration because it’s a time and place where I am entirely comfortable. That I can do some things and can’t do others is a given. Almost everyone there has been through the process of accepting their disabled self—the non-disabled people are in my experience, enthusiastic allies.

Folks sell things they’ve made, organizations advertise for participants or employees, political folks recruit advocates, there’s music, there’s free food. It’s a hoot!

https://www.disabilitypridemadison.org/festival-2025

I was thrilled to run into half of the staff of adhdcleaning.com, who proclaim they will Clean All The Things and invite passers-by to share their special enthusiasms.

Their promo material is brimming with disability pride:

Accommodating, Compassionate Help Tailored to Your Needs

Flexible Scheduling, Easy to Cancel
Allergy/Asthma-friendly vacuum with fully sealed HEPA filtration system
Keep two disabled adults happily employed!
Commercial steamer for chemical-free clean
We care about you and your pets
No guilt or judgment, ever

They continue with cleaning tips for cool, imperfect humans

( five important points )

This pair of people were dressed up to spread joy

( what a couple! )

From an earlier festival, I captured a Disability Pride Strawberry, in two photos

( whole and dissected )

I’m up near Rhinelander staying on Flannery Lake. I’ll be reveling in 15:45 hours of daylight on the summer solstice. Today there’s zero wind, while the second-growth white, yellow, and red pine trees are pumping out their jizz with enthusiasm. The lime-yellow grains appear darker as they overlay almost every square inch of the water, with wild swirls and eddies that extend many feet off shore until eventually the black surface reflects many puffy cumulus clouds in a light blue sky.

Lovely to look at, but not so great to breathe. At least we're not bedeviled by wildfire smoke.

( click for pic )

On day one, she was beautiful, and brave, and ready to cuddle. She was underweight, so her sleek black-and-brown body just fills an oval bed. Staring right at the camera with hope and trepidation, her stuffed alligator rests in front.

( Click for pic )

Today was her last day.

( Euthanasia, generally described )

Calcium Carbonate

Is everywhere in my life! It’s always underneath since Wisconsin was a seabed for billions of years. It’s usually under my wheels when I’m traveling because I like to stay on the sidewalks. It makes my toothpaste gritty to help clean my teeth. It’s a pretty yellow stone in my jewelry (aka aragonite or calcite). For better tea I filter it out of my hard water, then I take three capsules a day (with magnesium) to help my bones stay strong.

My Subconscious Was On It

I slept poorly last night—waking up every 90 minutes, and diving back in to the same dream: it was Saturday, I had to make up my seven pillboxes, and there wasn’t a drug in the house. Of course I forgot to take my bedtime meds.

Yesterday I accompanied MyGuy to his colonoscopy. We entered a small room with a surgical bed, vitals station, the now-ubiquitous bedside computer, and a parking space for me. After he donned the hospital gown, nursing staff connected him to the vitals station, and started a saline drip. They wheeled him off to the procedure while I waited in the cubicle. I distracted myself with some Sherlock fanfic.

Suddenly the door was opening. An unfamiliar nurse was wheeling a complete stranger backwards into the space—I asked should I remove my husband’s clothing if someone else was using the room. She said, “Of course not, he will be putting them back on in a few minutes.” Seeing my puzzled face, she said, “Don’t you recognize him?” I was still stunned—who were these people? She swung the bed around so I could see his eyes. The estranged swirl of jamais vu vanished, and I saw his lovely face, his smile enhanced by recent doses of fentanyl and midazolam.

All went well, and 45 minutes later we were in the taxi back home. I’d read of the vu triplets—presque, déjà, jamais—in Catch-22 when I was a teenager, but this was my first experience of jamais vu.

Very disconcerting—have you experienced this?

Ugh I’ve got a chest cold which could mean endless coughing. The good news is I have a recliner for sleeping mostly upright, and copious amounts of guaifenesin-pills-and-water, and the right sort of social network.

When I woke up early, I commanded Siri #4 to narrate amaruuk’s sweet Rosie & Johnlock series Paternity
Got a phone call from kestrell
Hopped on here, and tozka linked me to an excellent concert from Cathy Fink, Marcie Marxer and Chao Tian, hosted by the Smithsonian. Fink & Marxer were role models when I was a "movement musician" between 1976-1981, and I love how closely Chinese yangqin (hammered dulcimer) and Appalachian banjo music can intertwine
Today’s prettygoodword was the wonderful campanulate
minoanmiss shared strategies for smuggling the good bacteria past TSA

My public library’s Kanopy subscription provided two profound films, both under nine minutes:

CODA is an animated short from 2015. This Irish masterpiece follows a lost soul’s encounter with death. Pro captions, no audio description, no gore. Watch on YouTube or ( stream here )
Bacon & God’s Wrath meditates on loss of faith when Razie Brownstone, at age 92, tries bacon for the first time. CONTAINS: Very lifelike animated dead pig’s head, racist autocomplete results, emesis mentioned. Watch on YouTube without captions or ( stream here )

Skyview skyview.social lets you view and share Bluesky threads without needing an account. It offers a tree view, as well as an unrolled (all replies) and embed (haven’t tested it). Plus bots to save all of those; claims to track nothing.

I’d offer an example but even the briefest time on Bsky today has crashed my news wall like woe.

Excellent tool for managing time zone information https://dateful.com

The link you create a link automagically translates an event’s time to the user’s current time zone and day. When you create a free account, you can edit those links.

For example, a Media & Disability Communication Online Con

12 February 2025, 6PM to 9PM AEDT (UTC +11)
In my timezone

Seen on electric signboard on US Highway 12/18 E just south of Madison, 23 November 2024

Make it to deer camp safely buckle up

resonant revises John Henry for the modern day:

The Ballad of John Henry's CEO

You can't fight fate, gotta automate,
Keep the cost of production down, lord, lord,
The cost of production down.

https://archiveofourown.org/works/62395177

First published in 2012, still relevant as fuck.

I’ve always known that the most stressful equipment failure is when something breaks on my powerchair.

Previously, I would have put computing equipment in second place, but today I learned a new contender: when my tea kettle won’t turn on! Thankfully MyGuy recognized I was in anxious mode, and the store had a replacement, and all is well.

Well, all is .... I have tea.

Thanks, pauraque for giving me S for this six-question meme.

Something I hate

scented shampoo, soap, or similar substances. Fragrances like these trigger coughing fits and sometimes migraines. Weirdly, I developed this sensitivity after I quit smoking 10-15 cigarettes/day.

Something I love

sencha green tea, in particular Telsaan Sencha Spring Shizuoka, tragically out of stock

Somewhere I have been

Skópun, Sandoy, Føroyar (Faroe Islands).

more about that trip

In 1971, I visited my sister & her husband for two weeks. He was studying Skópun and its people for his PhD in anthropology. She was studying everything in sight. My sister wrote a novel about it and my former-brother-in-law wrote several scholarly books. I took many wild ferry rides, snacked on skerpikjøt (fermented lamb) and turranfisk (fermented fish), and admired the beauty and strangeness of these tiny islands in the middle of the Atlantic. This was decades before the first undersea roundabout connected most of the Faroe Islands with roads.

Somewhere I would like to go

Shetland Islands, Scotland or Svalbard, Norway, especially during midnight sun season.

Someone I know

sasha_feather! I introduced her to a disability rights framework at WisCon. She enthusiastically joined in and succeeded me as WisCon Access Chair. She introduced me to Stargate Atlantis thence LJ thence DW fandom. We’ve had weekly lunches almost continuously for more than a decade.

Favorite movie

I'm drawing a complete blank. I loved Miyazaki's Spirited Away when it first came out--I should rewatch and see if still shines.

Want to play? Raise your hand for a letter.

Folk singer Jesse Welles hellswelles wrote a great song about why companies like United Healthcare are horrible:

You paid for the paper,
you paid for the phone,
you paid for everything you need
to deny what you’re owed.

Play on YouTube or stream it ( here )

Lyrics and Guitar Tablature

I grew up in the 60s, when protest music was played on commercial radio. In the 70s, I played rhythm guitar and sang alto in several protest bands. We played at rallies and on picket lines, as well as small clubs in my town. Sharing a song with a crowd feeds my soul.

Any protest music that’s speaking to you right now?

Listening to a new performer handling a well-known tune is my favorite introduction to their style and philosophy. Of course there’s a website for that: Second Hand Songs. Here’s their data on the lovely tune "Blues Run the Game," which you may have learned from Simon & Garfunkel if you’re a boomer.

https://secondhandsongs.com/work/4015

( one version and 134 other interesting takes )

Thanks to oursin for these questions—if you’d like to continue the meme, raise your hand in a comment.

Have you read anything lately that really blew you away?

Cost of Living, an essay collection by Emily Maloney

Her precise, funny prose explores the interface between social norms and actual brains at personal and societal levels. Her neurodivergent thinking brings insight from her own experiences on both sides of the US medical complex. As a suicide survivor and psych patient, she acquired huge medical debt while getting inaccurate diagnoses and physical mistreatment. To pay down that debt, she worked as an emergency-department—based EMT tech, often in charge of doling out medications she was also taking. She translated medical studies into marketing copy for large pharmaceutical companies.

Two hundred words on the "opiate crisis" and pain prescribing:

( within )

If you were in a murder mystery, what part would you be playing?

The clueless guest who keeps asking “What’s going on?”

Is there is a musical instrument you wish you could play?

Sighs mournfully in F minor. The acoustic guitar I played daily from age 13 until I could no longer physically handle it, ca 33.

Favourite season of Buffy?

Season 3. I like the Faith-Buffy tension.

What kind of weather do you find most congenial?

Sunny with many puffy clouds, a fresh breeze, and temperatures between 50 and 65°F (10–19°C)

Thanks to goss, here’s a meme

Introduce yourself with some jobs you have done apart from what you do now

I retired from paid employment in 1990, and since then I’ve been a disability rights advocate, helped herd SF con cats, and typed & read many many things on the internet.

Before that, I was…

Photocopy clerk & summer gofer at ETS which runs high stakes educational testing like GREs, TOEFL, and SATs
Data tape librarian, keypunching the journeys of 9-inch tape reels between their storage cabinets and the tape drives where student loan data was read and written
Ten-speed bike assembler and mechanic
Civil engineering drafter who insisted that fire stations needed both men’s and women’s bathrooms
Phototypesetter, stat camera operator, pasteup artist, and staff designer

We have survived bad times before with mutual aid.

Still maintaining my news wall.

I appreciate it when people tag relevant content with "politics"

People with paid DW accounts can filter posts by tags

Tags: Show only content that is labeled with a certain tag or tags, or only content that is not labelled with a certain tag or tags (people sometimes refer to this as "blocking tags").

https://www.dreamwidth.org/support/faqbrowse?faqid=76&q=filter

I just listened to a This American Life episode (audio or transcript) where David Kestenbaum, an experienced science journalist, kvelled about how awesome Chat GPT is, how they are truly approaching AGI—artificial general intelligence. His turning point was that the large language model was trained on text, and wrote its own graphic-generating program when prompted to show an image. And that's pretty cool, but ...

I asked ChatGPT-4o some super-basic questions about my family history, all documented in US Census data. The results were stunningly bad.

My maternal grandfather's cousin was Richard Neutra, who was a well-known modern architect. ChatGPT-4o insisted that everyone in my family was related to him--that my maternal grandmother was really married to him. It would show accurate 1940 Census data—-my maternal grandmother with her actual name and and then say, but no, my grandmother was actually married to famous person and my mother was his daughter.

It answered an identical census question incorrectly and then correctly in immediate succession.

As erinptah has been diligently documenting, "AI" is simply not there yet, although this hasn't prevented everybody and their dog claiming it as the absolute new hotness.

( Verbatim Q&A inside )

I acknowledge that I have no technical qualifications to assess the relevance of these hallucinated answers to the overall reliability of "AI". I welcome new knowledge!

My family is enjoying a week up north near Rhinelander. Eating, chatting, sitting outside without care thanks to a steady 25 mph (40 kph) keeping the mosquitoes away.

Yesterday’s sunset is a thin sliver of peach and baby blue, barely an eighth of the sky, but fortunately doubled in the still lake. Impressive deep blue cumulonimbus fill the rest of the horizon. It’s a gentle end to the day. At 1 am, a very loud thunderstorm woke us all up while dropping 2 inches of rain.

( click for pic )

Any exciting weather by you?

In particular

Perfect Spring Weather

highs around 70°f/20°c and lows around 55°f/13°c, mostly sunny with flamboyant clouds

Mad Gluten Free Fest

hosted by ALT Brew which makes (you guessed it) GF beer. Found some scones without cream that still tasted great. One vendor claimed bagels, but they were baked not boiled so nevermind. They also sold crypto rye bread. (Caraway seeds helped, but it lacked that nice sour-sweet flavor I remember).

The Blessing of the Bicycles

hosted by Trinity Lutheran Church, aligning with

Madison Bike Week

It’s been an institution for decades. Several mayors have rode in previous years; the current mayor regularly commutes on her bike. In a former life I was a bike mechanic and enthusiastic 3-season cyclist. Now I love the extensive bike infrastructure because the paths are blacktop (asphalt aka bituminous) which means much smoother rolling in my powerchair, at its full speed of 6.5 mph/10+ kph. Even better, the transportation department decrees that the bike routes be cleared to the same schedule as the "salt routes," which are the key roads for getting to school and to work

Best get-out-the-vote metaphor

Thanks, sonia for pointing me:

“Voting isn’t marriage, it’s public transport. You’re not waiting for “the one” who’s absolutely perfect: you’re getting the bus, and if there isn’t one to your destination, you don’t not travel—you take the one going closest.” From Vicky James on Medium

What lovely things happened to you?

Seventeen years ago, I volunteered to join the convention organizing committee (concom) for WisCon, an annual feminist SF convention held in my town. For sixteen years, the month of May was a festering cauldron of anxiety as I prepped for the event. Even after I handed off all my duties to other concom members, I couldn't let it go. Arghh, brains.

This May has been easier because WisCon is taking a Gap Year. If you're feeling chatty, the WisCon Gap Year Discord Server is for you. ( how to participate )

I'm proud that my concom work helped to provide a foundation for a more accessible WisCon, and thrilled that other event planners built on that work.

I learned a lot at WisCon, and I think the conversations we had, the relationships we built, the connections we nurtured have changed the SFF community. At its founding, WisCon made a place for feminist exploration. I think WisCon was part of a generational shift that means those conversations are happening all over the SFF world. If it turns out that 2023 was the last WisCon, it was a rousing success.

Hooray! Out into the world again.

I'm so grateful that MyGuy had an easy time, that maintaining adequate isolation wasn't that onerous, and that I didn't get it (yet).

Now I can go back to the pool (full of highly vulnerable people, so I was super cautious).

( two negative Flowflex COVID test cartridges )

Instead of stressing over making a perfect essay, I’ve numbered this summary so it’s easier for you to ask for elaboration.

( five joys )

( four sorrows )

Back in August we got a new van — and wow howdy the surveillance state has arrived at a car dealership near you. The place we bought it tried seven times to get our email — so they could send updates to the car. It comes with three months of free satellite connectivity and defaults to connecting to any mobile device within its red doors.

( ridiculous details )

The good news is there's room for MyGuy to drive my chair up steep ramps into the back, Bella likes it, the seats are comfortable, and we've already scratched it (so we no longer need to be hyper careful).

Any vehicular news in your life?

accessibility [38]
advocacy [17]
apple [14]
assistive tech [123]
- audio/image description [17]
- captions [25]
- wheelchairs [65]
audio [27]
beadwork [16]
bodymind & impairment [278]
capitalism [20]
classism [37]
climate [24]
clouds-clouds-clouds [16]
comics [38]
computer hardware [22]
cons
- wiscon [65]
covid-19 [24]
cultural appropriation [12]
design [16]
disability
- culture [121]
- history [20]
- news [17]
- policing [15]
- pride [52]
- rights [35]
- studies [36]
disablism [66]
doctors [25]
dogs [58]
dreamwidth [20]
family [64]
fandom [28]
- due south [14]
- sherlock holmes [21]
fanfic [42]
feminism [13]
food [51]
friday five [17]
geek [21]
gender [13]
gluten-free [42]
help wanted [19]
history [16]
home in msn [52]
how to computer [25]
how to dreamwidth [27]
human rights [26]
inaccessible content [32]
infrastructure [38]
interdependence [56]
ios [19]
joyful things [326]
language [24]
lazyweb [91]
living online [133]
love [11]
media [76]
meme [66]
memoir [177]
meta [55]
metaphor [27]
moan-whine-rant [71]
moving with purpose [31]
music [39]
myguy [71]
photo [95]
pod* [30]
political rhetoric [16]
politics [19]
poll [13]
ponderments [56]
power [27]
privilege [13]
queer [12]
racism [62]
radio [22]
rave [70]
reading [93]
rec [51]
review [41]
rhetoric [26]
science fiction fantasy [33]
science is fun! [18]
sex [15]
sexism [13]
signal boost [258]
snowbirds [23]
software [17]
tea [12]
technology [15]
trans* [16]
transit [13]
travel [68]
typography [11]
video [90]
visibility [13]
web browsers [11]
white privilege [14]
writing [12]

Adaptive Tech Resources

Disability Culture

Dreamwidth Tools

Subscription Filters

sherlocks

July 2025

S	M	T	W	T	F	S
		1	2	3	4	5
6	7	8	9	10	11	12
13	14	15	16	17	18	19
20	21	22	23	24	25	26
27	28	29	30	31

Style Credit

Style: Pool for Stepping Stones by branchandroot

Page generated Sunday, July 27th, 2025 12:52 am

Inside the Little Plastic Castle

adventures with Jesse the K

Entries tagged with memoir

Joy from Disability Pride Fest Madison

Accommodating, Compassionate Help Tailored to Your Needs

Things I Can Only See Up North

BELLA: We’ve loved every minute together

CaCo3 & Talky Dreams

Calcium Carbonate

My Subconscious Was On It

Evidently, this was jamais vu

Lovely Things from My Reading List

Five Things in this Post

6-Question meme: S

Protest music helps me survive tough times

Great Things of 2024: Cover Songs

meme: Five Qs from oursin

meme: 5 early jobs

Ugh

Artificial Intelligence? My Scaly Left Foot It Is

Joys of Northern Wisconsin

Many lovely things this week

Perfect Spring Weather

Mad Gluten Free Fest

The Blessing of the Bicycles

Madison Bike Week

Best get-out-the-vote metaphor

WisCon thoughts

Evidence of absence

Joys & Sorrows 2023

Surveillance State in a New Van

About Me

Follow blog by email

Popular Tags