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 )

Wow I loved this doc! Is there anybody out there?, 87 minutes, UK, 2023. Directed by Ella Glendining, in English with precise captions and audio description.

Blurb:

Born with a rare disability, filmmaker Ella Glendining wonders if there is anyone who can share the experience of living in a body like hers. This simple question—one which non disabled people take for granted, leads to a journey to not only others who live like her—but to the realization that meeting them changes how she views herself in the world, as well as many surprises along the way.

Glendining includes archival footage of her own childhood (older videotapes with flashing lights across the bottom of the screen) as well as horrifying evidence of rank bigotry that disabled kids in the UK. She talks about loving bodies, her own and others’. She documents accepting parenting from her own youth and with her own child, as well as the challenges of wanting to have a "perfect birth" (no drugs, no knives). She demonstrates access intimacy and cross-disability solidarity, interacts with one great doctor and one surgeon-on-a-mission to normalize kids through massive pain, and finally answers the title question yes! meeting three people with bodies similar to hers. I got bi vibes from the doc but I don’t remember her explicitly coming out. In this extensive interview at Diva Magazine, she does explore her bisexuality: https://diva-magazine.com/2023/11/13/ella-glendining-is-there-anybody-out-there/.

I want every parent of a kid with orthopedic impairments to watch this film today, before they ponder any more "treatments." It would also be a great discussion starter for a classroom or activist group.

( Where to watch and trailer )

Following brainwane's excellent advice, I've been on sabbatical from my years of advocacy re accessible environments.

( content note: claustrophobia )

99% invisible is #1 on my podcast list—I listen as soon as it drops. This week's program exemplifies why I love the show. Its mission is "about all the thought that goes into the things we don’t think about — the unnoticed architecture and design that shape our world."

It's beautifully produced, and their website provides complete transcripts with additional visual resources.

https://99percentinvisible.org/episode/orphan-drugs/

Episode 329, Orphan Drugs, fills thirty minutes with a very U.S. story:

- why drug companies systematically ignored effective medicines for rare diseases
- the woman who campaigned for change
- an affected, influential individual who noticed a small press mention
- the popular TV show that amplified a policy issue with effective drama
- the Orphan Drug Act legislation that provided Big Pharma with financial incentives to sell low-incidence medicines
- the unintended consequences: needed medicine for the end users, and huge profits for Big Pharma

For both my personal benefit and as an advocate, I’ve spent many years framing my disability positively. I was fortunate to encounter the social model of disability in the late 1980s, which taught that my disability wasn’t my problem, but our society’s unwillingness to flex.

But relentless optimism is making me cranky. The latest was yet another person with the grand idea to crowd-source accessibility info! with an app! Oh wait! this time Google is asking us to contribute our experiences.

This is a massive waste of time.

Instead of telling people what’s accessible, let’s signpost the places we CAN’T get into, the services that DON’T take our needs into account.

( why now )

[ETA: fix Annalee's twitter handle and bad HTML]

Annalee Flower leeflower
has a GREAT! intro post re: SFF & Disability.
http://thebias.com/2016/02/16/the-geeks-guide-to-disability/

quote begins

---

I’m hoping that if I walk through some of the more common misconceptions, I can move the needle a little–or at least save myself some time in the future, because I’ll be able to give people a link instead of explaining all this again.
[…snipped…]
The science fiction community tends to take this diluted version of the medical model to extremes. Because we’re used to speculating about abilities that humans could have if certain fictitious conditions were met, some of us consider all human bodies fundamentally broken. It’s easy for us to fall into the trap of thinking that, for example, since being able to fly unaided would be really cool and convenient, we must all be disabled because we can’t fly.

Here’s the thing, though. Because we can’t fly, we have built a world that is accessible to people who cannot fly. We build roads and sidewalks to facilitate ground travel and elevators to provide access to tall buildings.

---

quote ends

Read it and link like a wild thing :,)

Last week I went to an informal get-together organized by UW students for folks interested in academic disability studies as well as community activists and disability services providers.

Heard two tales which opened up my heart and gave me hope for the future.
( re raising Deaf kids and organizing disabled students )

I had one of those encounters in the weeks before WisCon. I want to record it for posterity, and I welcome your thoughts as well.
( What she said, what I did and didn't say )
The ideal response is not having it matter it all. Not surprisingly, Dave Hingsburger's recent entry explores what it's like when we can really not care. ( Dave Hingsburger's recent entry explores what it's like when we can really not care. )

I'd hoped to have a delicious thinky post about the difference 20 years of the Americans with Disabilities Act has made for the world, the nation, the state, and me. Meditating on those topics proved so depressing I didn't even leave the house yesterday. Ha! Depression is the gift that keeps on stepping on my toes.

So: the ADA and what it enabled today. In my zippity, comfortable power chair I zoomed to a "regular" bus stop and thence to my accessible health club where I swam for 40 minutes. I used half of the seated showers (what the staff insist on calling the "handicapped stalls.") Most of the people I encountered treated me respectfully and without patronizing me. I saw at least 10 other people whose impairments were readily evident to me. Another bus to the next stop. I had no worries about crossing a six-lane 45mph road because my chair goes fast enough (but not, alas 45mph). There were curb ramps which almost met ADA specs almost all the places there should have been -- the speedy chair simplifies crossing the street via driveways when necessary. I stopped in three stores during these errands. At one store the counterperson dramatically jumped back and performed the Vanna White maneuver to demonstrate that there was room to move in the shop. (Oh really?) The other stores gave me exactly the same attention as the evidently enabled* people who entered at the same time.

OK, that's all about assistive technology, and there's more AT-related items I could enumerate (built-in enlarging features in apps and OS simplify computer use; cordless phones; I'm stopping now).

The biggest change has not been in my body but in my perspective. In the late 80s, I'd been educating myself on social-model, disability-rights reading, but my impairments were not yet evident to others. That disabled people's rights had been enshrined in law was hugely important to me. That the ADA used "mental illness" as an example finally tipped me into considering therapy.

So, thanks for my life, ADA: many mundane things, and a few great big ones.

The law is not enough; as Cal Montgomery taught me: