Musings on fundamentally ableist assumptions

It isn’t a terrible thing, but a revealing thing, that when I give a short description of the game project I’m working on, and include that you can play a blind or Deaf/deaf person or wheelchair user, people tend to make several assumptions. That the game is about the experience of frustration or pain, about inaccessibility, about barriers. And, that it’s for able bodied people to develop understanding or empathy. I’ve gotten this response so many times that I’ve stopped being surprised. But, how odd!

The reason I’m writing these possible points of view in the game is so that I and other disabled/blind/deaf folks can feel some part of their own experience reflected. It’s a game with fantasy and magic and time travel, it’s about feeling connected to your local geography and history and people and having a sense of place in the world, with a bunch of goofy puzzles. It’s supposed to be fun and amusing. The wheelchair using point of view character might “notice” the bumpiness of pavement or need to use the elevator in train stations instead of the stairs. The blind character gets to use a little audio guide to the train station environs instead of looking at the murals and signs and maps. That’s about it! It’s so that we get to play a fun game without feeling jarred out of what would be our own experience, on some level, and get to feel the pleasure and validation of being represented.

It’s like assuming that a farming or spy game where you can choose your gender, is “for” men to understand women or NB people’s experience, and to show how frustrating it is to be a non-male farmer or assassin or whatever. No, it’s to play the game with a sense of identity that you want to play as, not to play a game about being constantly sexually harassed and shooting powerful lasers out of your boobs, though I’m sure that would be fun in the right context.

Reasons to like a song

My dad clipped out this article on the woman from “My Sharona” (who is indeed named Sharona) & mailed it to me. It’s been a while since my parents sent me newspaper clippings. It felt nice… Anyway he sent it because i liked that song and used to play the album, which was possibly the first album I bought with my own money, in 1980 (either that or the Freedom of Choice Devo album – I can’t remember).

I also named one of my Breyer model horses “Sharona”. It was a very beautiful one!

Here is the secret, which my dad may or may not know, as to why I liked the song. It was because my cat was named Motor and I could sing the line “Oooh you make my Motor run, my Motor run” and think of my adorable cat, who was named Motor because we lived in Detroit, my dad worked for Ford, and obviously because of loud purring (from reading the book The House of Thirty Cats, I took cat naming very very seriously. You have to name the cat something appropriate to its particular personality.)

I like the song M-bike by PJ Harvey for the exact same reason! Good chorus: “MOTOR! MOTOR!! MOTOR!!!”

I guess the new “sending clippings to your grown kids” is just sending tumblr memes over whatsapp since that what I do to mine.

Extra sizzled smell

It took most of the day but I successfully got across town and got this wart thingie removed from the edge of my eyelid. I had two injections in the eyelid to numb it (novocaine eyesocket!) and they did a lot of other confusing and scary stuff and then neatly, quickly, cut out the wart. The tiniest little weird shaped forceps! Then it was cauterized. And swiped with mysterious substances.

All the way home on the bus I could smell it, too — like singed hair and extra crispy bacon.

I was trying to think what it reminded me of because I was having a vague proustian memory feeling and then realized it was when I got that brand on my arm, but also the time that I first lit a gas oven when i was 17 and burned my own eyebrows and bangs off, and then wayyy back to where I got on my friend pam’s older brother’s motorbike and burned the fuck out of my calf on one of the tailpipes (I still have just a trace of the scar).

While the surgeon was doing his thing I began to babble from nervousness and to get my mind off of creepy steel instruments coming towards my eye. I asked him about his practice (out of UCSF where he does reconstructive eye-related surgery) and then was like “Oh you know I read an interesting book about the clinic in World War I run by the guy who basically invented plastic surgery, Gillies, by this guy who was a pilot and had his eyelids burned off.” Somewhat taken aback the doc said, Yes, he knows about Gillies! and there is a procedure still named after him. This was ridiculous, but I couldn’t help it – it just popped into my head and it really does help me stay calm to get an interesting conversation going. In retrospect as I look at the Wikipedia entry I think I am actually mixing up at least 2 different books, one about Gillies’s clinic and one the memoir of the RAF pilot much later about the Guinea Pig Club, called The Last Enemy.

It took a ridiculous amount of time to get to the clinic and back (note to self, next time, take the 24 and just scoot half a mile, because, the J is a PITA and the 22 is possibly the worst slowety-ass bullshit bus, somehow) and I also had to wait very long times in between mysterious Things happening in the eye surgeon waiting rooms.

Eye surgeon waiting room was very full of older people hobbling painfully or with walkers or being pushed in those hellish “transport chairs” that give you no autonomy (and parked by their relatives/caregivers in humiliating places) Anyway older people with not very good mobility looking me up and down having some thoughts. Like planning to chairjack me I’m sure! You… yes you… you too could have this freedom…. take the wheels! *puts on mirror shades, fake-smokes a long candy cigarette* Don’cha wish your walker was hott like me, doncha wish your crutches were wheels right nowwwwww, doncha… I wish I could pep talk and liberate them all. Lovingly….

I worked a little when i got home but my eyeball feels weird. My eyes both keep watering and my eyelid on the formerly-warty side feels swollen and unpleasant.

So glad I got this over with! I’ve been putting it off for 2 years. Next up, a painful wart on my finger and then the dentist (way worse than eyeballs – dental phobia – I am going to try a new super nice sounding dentist who specially focuses on disabled/ phobic people hoping that I won’t throw up and cry when they even do the xrays and also I don’t want to be molested by any more creepy dentists and it’s an all women office, whew…)

Another pleasant day

No earthshattering thoughts here. I’m up to 1917 in the Morland Dynasty books, I did a ridiculous amount of bug triage, then took a friend to late lunch and got my toenails painted (copper colored with black and gold flowers on the big toes). Also worked on the sidewalk tree garden but not too hard – I did half of it and left the other half for tomorrow.

Early to bed with my book – that’s the plan – I feel a little boring today! But nice!

A warm woolly bed

Dashboard the Cat likes her new warm, woolly, felted bed that looks like a rock. She hasn’t much taken to cat beds in the past but she seems to like this one! It’s so cute!

Cat in a felted bed

I’m tired from a very long work day, so that’s all! I didn’t even leave the house today, omg. At beta 7 of…. 13 I think, plus another release candidate or two in the last week. The pace is starting to feel hectic.

Starting to think about WisCon43!

I just booked our tickets to WisCon and am feeling excited about going! I haven’t been since 2014.

Next Monday is the deadline to suggest panel or talk ideas. If you think of a panel you’d like me to be on, feel free to suggest me (or talk with me about it).

It’s going to be fun to get to explore Madison a little bit in my powerchair – I’m hoping it will really free me up to roam around!

Not that it is easy to leave the hotel. It’s weirdly utopian. I’ll see so many people I absolutely adore!!!

The Emperor and The Victory

Still plowing relentlessly through the Morland Dynasty books. I am up to a quite exciting bit of the Napoleonic wars. The books have unexpectedly morphed from mostly Yorkshire drama to naval life and battles, including the Glorious First of June, the Battle of the Nile, and Trafalgar. Including something of the lives of women on board the ships.

I think that will continue for another couple of books, so if you like this sort of book (Master and Commander, Hornblower, etc) and the Regency and so on, you might want to start at book 10 and go till book 14! You won’t get some of the references to earlier family history but that doesn’t matter much – the books stand on their own.

They’ve well written & with tons of solid historical background – I recommend them!

Going off sleeping pills

I’ve dealt with insomnia ever since I can remember and it changed my life for the better to go on sleeping pills, helping me feel secure that I would sleep and helping me have structure in my life, be healthier, get to work on time, and so on. It’s hard to describe the desperation of not being able to sleep and the way the night goes and how I’d then sometimes fall asleep just as the sky turned grey and the birds started up.

Given the current research into the down sides of hypnotics I’m going off them as best I can. It sounds like your risks go down substantially when you stop. I went to a 3/4 dose, then a half, then a quarter and now had 2 nights of ok sleep with zero and with no rebound effect. I have been scared of the rebound thing (where you just can’t sleep for a couple of nights at all) because it would be physically painful and put me at some risk for a general flare up of problems. But, all was well, tapering worked, and I’m feeling positive. I’m hoping that my life is stable and settled enough that maybe I won’t have this problem so much, also, since I have slowed down my pace of life a lot maybe I won’t end up in such pain at the end of the day that it keeps me awake.

Some science fiction/fantasy with disabled characters

Or with an interesting take on variations of ability or human/machine integration/enhancement.

I might mention some or all of these in the panel today at CripTech. And, I’ll come back later today and add links to this list and some notes on the panel.

“Disabled People Destroy Science Fiction” – magazine issue/anthology
On the Edge of Gone – Corinne Duyvis
Murderbot by Martha Wells
Ancillary Justice by Ann Leckie
Various books by Becky Chambers
The Fifth Season by N.K. Jemisin
Brain Plague and The Highest Frontier by Joan Slonczewski
Autonomous by Annalee Newitz
“We Who Are About To…” Joanna Russ
A Study in Honor, Claire O’Dell
Borderline – Mishell Baker
Of course, the Vorkosigan series by Lois McMaster Bujold