Excerpt from A House by the Sea

Reading Disabled People Destroy Science Fiction and loving it. Some great stories and essays – I have more to say in detail but for now a quick note and an excerpt from P.H. Lee’s “A House by the Sea”, which describes the life of the former residents of a certain basement in Omelas.

Do you believe it now? Can this really be how they live out their lives, so close to the City that they can hear the bells clamoring and the processions proceeding? Can they really live together, in a house by the sea? No? Let me tell you this, then. There used to be a doctor—a nice man with a real white doctor’s coat, who still lives in the City—who came out to their house every Wednesday to check up on them, but that didn’t work out, because he kept feeling uncomfortable and trying to euthanize them. So now, whenever one of them gets sick, a woman comes in on the train from Vallcoris. She doesn’t have a doctor’s coat. She just has a sweater. She doesn’t know about the basement, she doesn’t know about anything, not really. She just takes their pulse and asks them to cough, and leaves them with prescriptions, and no one tries to euthanize anyone.

Putting this in a sort of mood-file in my imagination, along with the title story of The Open Cage by Anzia Yezierska.

By Degrees and Dilatory Time by S.L. Huang, and Nisi Shawl’s The Things I Miss the Most also struck me as amazing – exploring the complexities of feelings about our bodyminds over time.

The ways of maps

A friend was asking me some questions today about intersections of disability, gender, and the internet. What happens when creators of the web, or of applications, bring their identities to bear? Are there interesting examples?

I get asked questions like this fairly often: Show me a disabled woman of color who is like, inventing some entirely alternate reality! Or, something along the lines of, give me the name of someone who is “just like so-and-so famous white guy, but a (disabled) woman of color”. No one I can think of ever quite fits the requirements, in part because the questions are framed from a point of view of what we have now and the point of diversity is looking for something different outside of that frame! The differences may not be what you expect or want them to be. It is hard to answer the questions but I always try to offer some thoughts – usually just a few names or pointers to interesting web sites.

One aspect I could point to as a general principle, though, would be to look for people who are consciously creating experiences or works that are multi-layered and can be experienced in different ways. For example looking at the Disability Visibility Project, you can say, well, what is this? It offers many different experiences: blog text or Facebook posts, with image and video descriptions; podcasts with transcripts; oral histories, interviews, and personal connections; Twitter chats that connect people over an hour on a very low barrier to entry public discussion using particular hashtags. Or, thinking of Kinetic Light’s Descent: it’s a dance performance where there’s meticulous attention to the performance venue accessibility, audio descriptions, music, poems, narration, and 3-D printed representation of the stage for tactile participation. Doing those things is quite radical and yet it doesn’t mean inventing a new kind of internet or a whole new technology. It is bringing the tools to bear that we can and bringing all of our awareness into the game.

In theory, those tools could be built into our expectations of what an app, a web site, a video, or an image, are and how they are experienceable (or consumable, if you want to think of it as consumption, which I’m not sure that I do). They may be there, but they are not integrated as they might be (for example, have a look at the WordPress Gutenberg debacle!) And, in fact I think Kinetic Light has an app in development that is intended for use by other performers or performances, that would allow for the different “channels” of experience to be presented more easily (such as translations, transcriptions, descriptions, music, or other dimensions of experience).

I want to say more about that but first a little digression as the thought I was leading to is more about geography and embodiment. I think of all the efforts people are making to improve maps. What is shown on maps, in what level of granularity, how do we represent it. This depends deeply on our physical embodiment and how we traverse the landscape. A map is not just a door or a path – it can show something of the ways we might want to be in it (or not). I care not just about stairs and ramps and elevators, but about texture, cobblestones, bricks, gravel, dirt, grass, marble — for navigability but also for enjoyment or to prepare myself for extra pain. The SoundPrint project maps for noisy or quiet environments. We care about hot and cold, sunlight exposure, whether there is a view, a feeling of claustrophobia or limitlessness, whether children can run free or can be easily entertained and accommodated, and certainly about how easy and fast it will be to go to the bathroom. I think of projects like wikimapia which were going to gather photos and impressions from many people for particular points in space, and of my dream project of creating beautiful and useful MUD-like text description overlays on precise points in every direction, which could deepen over time as places change, to retain the ghosts of the past.

Work from home looks

I really enjoyed these cartoons today:

There are 4 pages of work from home outfits of uncanny accuracy to how I normally dress at least, until noon or so. Some details vary, but I totally put my hair (short as it is) into a top of the head ponytail and I tuck my tattered pajamas into my (too big, mens’) socks. The t-shirt boob tuck is also just TOO REAL. I did wear actual pants today. My t-shirt is one that I got in 1988 at the Guinness factory in Dublin which has miraculously survived all this time with no holes and amazing softness.

The artist has an adorable etsy shop!

In which I plot my movie-going outfit

Behold the glory that is the preview for the movie Galaxy Lords!

Ridiculous props and outfits are my favorite. Is that guy riding a little speeder made out of a treadmill and a leafblower covered with metallic spray paint?! I think so!

Danny got us tickets to see it next week in SF! So excited.

Rambling a little

I’m curious to read the Commonweal series by Graydon Saunders going off a friend’s description and from the reviews. Everyone seems to agree it is strange.

First, imagine that you’re reading Master & Commander, except without any of the introduction to workings and terminology of a Napoleonic war era British navy sailing ship provided to the viewpoint character dr Stephen Maturin. Instead, it would be like reading the first person account of the operation by captain Jack Aubrey, written for people who are already familiar with both the world he exists in and the structure and organization of a military outfit.

and then

It’s military fantasy with no gendered pronouns (no, really), an interesting look at systems of government, obvious affection for the smallest details (you like logistics? get yer logistics here) that meant I came away feeling like I knew a whole lot more about artillery than I did when I started.

That’s plenty to get me interested!

This book isn’t on Amazon and so after a bit of digging around, I bought it from Google Books, found the epub download link, converted it in Calibre, and emailed it to my Kindle. That’s also how I read book manuscripts that people send me and stuff that I download from the Internet Archive or Project Gutenberg.

I had a good day today. Went to the doc for some routine tests and vaccinations, worked from a super nice cafe in the Castro where I could see the vintage F train cars go by, did some shopping & home again to work for the afternoon. It’s still such a relief to be able to breathe freely and see the blue sky after two weeks of wildfire smoke & filter masks.

Other people’s reactions to me in the Model CI continue to be odd, quite different from their reactions to me on the TravelScoot. I think it is a return to being perceived as more disabled in some mainstream (and likely quite wrong) way while the TravelScoot as I’ve observed many times tends to be seen as some sort of quirky toy, a hipster affectation, no matter how obvious it is I walk with a cane or how many blue accessibility symbol stickers I plaster all over it. The Model CI just reads as “wheelchair” though a fairly slick looking one so it is a quieter interaction and people are more embarrassed to either look at me or meet my glance. I got followed around a store for a bit as they tried to obliquely figure out if I was about to shoplift madly or what. (What.)

I figured out a really good setup for the undercarriage with a big sturdy shopping bag that has 4 handles. Carabiners clip the back handles to the spots where the rigid plastic basket would clamp on. The front handles looped around the nubbly posts at the front sides of the seat which are meant to have maybe a light and a coffee cup holder (they will have those soon, as soon as I can get to a bike shop for the holder and charge my new bike light).

In the barrage of horrible events

It keeps coming into my mind today how “we” are tear gassing asylum seeking families with children at the border today.

Ridiculous, and horrifying, as I picture the minds of the people who fired tear gas at the crowds today, at children. I don’t usually get all “think of the children” because violence is horrible for anyone. Here, I do feel some particular outrage. It is so terrible to think of disrespecting someone who walked across half a continent to get to the border. Instead of the respect and safety and asylum they could be offered, “we” met them with this brutal cruelty. It’s shameful.

The only comforting thing is hundreds of “us” on this side of the border marched in support and welcome.

I don’t know what to do in practical support myself, but am writing Feinstein, Harris, and Pelosi and will look for somewhere effective to donate. More to CARECEN seems good. Also thinking about Asylum Seeker Advocacy Project. Whoever seems like they know how to help the most effectively right now. And I will just keep on doing my part in the world I guess.

Warcross is awesome!!!

Warcross continues to deliver the goods! I love this book. The gamer/hacker heroine in her ripped up jeans and flannel shirt has now gone through the first draft for the Great Games or whatever they are called, and was picked first to be on the Phoenix Riders team even though she is a lowly level 28. The captain of her team, Asher Wing, is a wheelchair user, which made me instantly happy. I was trying to figure out from the description what kind of chair he had and I am thinking powerchair since his headrest was mentioned. Another named character on an opposing team was a former Paralympian.

Scenes of clever hacking… loving descriptions of leaping around and fighting in the Game . . . And she has moved from her first swanky hotel room to some sort of team training mansion where she has a suite with a rooftop patio with her own private infinity pool.

They have also been to a great party at a disco which was seamlessly wheelchair accessible with great augmented reality. There are so many adorable details like that there is a (female) character named Hamilton.

I also dig that we see more of Emika’s motivation and backstory for the high school hack that got her arrested.

This is like the perfect antidote for the boring sexist barfbag that was Ready Player One. It’s assuaging my soul!

Secret Tides of Rebel Librarians, and a powerup

Some recent books.

I re-read The Black Tides of Heaven (and then The Red Threads of Fortune) by J.Y. Yang, sparked by a Habitica challenge. I love the characters & their angsty drama, and the worldbuilding & politics and the magic/tech system.

Property of the Rebel Librarian by Allison Varnes. A fun book about a bookish middle schooler fighting oppression and censorship. The adults are so over the top, firing the librarian & throwing away most of the books in the library. Books are contraband! I enjoyed this and followed its shout outs to …

The Secret Horses of Briar Hill by Megan Shepherd. Saw someone say that it is as good as The Secret Garden. It didn’t quite get there for me, but it is lovely — its heroine is a girl in a TB hospital for children out in the country in England during WWII. A depressing atmosphere of coughing, greyness, blustery winter, eating soup made from half-rotten onions. She sees winged horses in the mirrors, writing letters with the Horse Lord. Where it fell a little short for me is in her dealing with her trauma – and her actual changes of heart as well as everyone else’s. That, and if you can’t put a piece of paper colored with pencil out in the snow and rain how were the other things surviving? (Sometimes, I can’t help logicking the fantasy novels. Sorry.) It’s a good book.

A book I didn’t much like – Blue Collar Space. Old school feeling, along with the old school annoying gratuitious sexism to where there are theoretically equal women on the spaceships but somehow their agency is always undermined – they have to be rescued or are helpless or they do the thing by accident – they don’t quite achieve the asimovian squeal but it’s there…. absolutely maddening. Oh no wait, the one story with the teenage girl talking to her Daddy DID achieve it. I nearly forgot. Anyway, this book can bite me.

Currently in mid-read of Warcross by Marie Lu. Oh wow! This is the most ridiculous and indulgent book ever! Our heroine is an older teenager desperately trying to survive her first year out of “group homes” and deal with being in debt, about to be evicted. She is a badass hacker and bounty hunter of the world’s most popular game, Warcross, which EVERYONE PLAYS. Did I mention she has a skateboard and rainbow hair and a fabulous, meaningful, full sleeve tattoo?

I have just got to the bit where she has gotten off the private jet and is in a swanky hotel in Tokyo, freaking out at all the delicious room service food, and the comfy bed, and how the city is much more integrated with the Game – you level up constantly just while living your life, and the virtual overlay of people and buildings and the entire city is gorgeous – their pets, their levels and achievements, their weird outfits, virtual environments — Really makes me hark back to how people thought VR or AR was going to be.

I mentioned the skateboard? And how she wakes up in the hotel and puts on her only outfit which happens to be WHAT I WEAR ALL THE TIME ie a tshirt, ripped jeans, and a red flannel shirt. Thanks Marie Lu for gratifying my every desire in this weird dystopian future. Yes. More fantasy novels with soft hotel beds, a view of a glittering city, room service fried chicken that is better than anything you’ve ever eaten, and a pleasant “ding” indicating that you just leveled up.

Layers of history

Came across this excellent article today on U.S. museums that add information about slavery and enslaved people to their exhibits.

Can Art Museums Help Illuminate Early American Connections To Slavery?

Silly but clear headline (the answer is “yes, of course”).

For these particular portraits of people from 1700s Massachusetts, there is presumably whatever info was there before on a placard next to the painting, and there is a new placard outlining the person’s connection to slavery, including the names of the enslaved people whose labor enriched themselves and their family.

I like this approach to history. Who is missing? Who is not seen, heard from? Who has disappeared from the picture and why?

Add in another layer, of the indigenous people of that part of Massachusetts, and their lives at the time of these portraits.

An interesting book is mentioned in the article, The Price for Their Pound of Flesh: The Value of the Enslaved from Womb to Grave in the Building of a Nation by Daina Ramey Berry. I may give that a read.

Further adventures

More early impressions of the Whill Model-CI. I took the J MUNI train to Dolores Park yesterday and it was pretty easy to do everything. I’m getting used to joystick driving, feeling more confident there.

The new MUNI cars are spiffy – clean and sparkly even. The large front wheels of the Model CI were great going over the gap between platform and train. In my Travelscoot I had to gun it at top speed to jump the gap. I especially like the new accessible button placement for the front of the train car. You can reach it whether you have the seats flipped up or not (while the old style cars have the button under the seats — you can’t get to it if you’re actually sitting on the seat, and have to yell to the driver instead.) The bigger windows on the car were great.

bus-button.jpg

(My ride home was also fine, old style train car, more crowded, but not hella crowded, and people moved aside for me. I did not run into anyone. Or, if I did, I then ate their souls and brain-wiped every witness so it’s more or less like it never happened.)

No problems navigating around the cafe. I practiced a few times at pulling the chair up to the table with the arms half-raised. If you have an iphone I think you can raise the arms, then steer the chair with your phone, but the remote steering doesn’t work from android phones yet. It worked ok to raise the arms a little, pull forward, then turn off the chair and pull the arms further back.

liz-in-powerchair.jpg

Then I zoomed around Dolores Park for a while. By this time I was in “sport” mode.
Eco mode – the highest speed is limited. Ignore it
Normal mode – high speed (setting 4) is 5mph. setting 3 is maybe 3mph
Sport mode – high speed is still 5mph. Setting 3 is 4 mph or so.

I didn’t notice any other differences between these settings.

OK so here’s the buzzkill moment – I was zooming down a long glorious hill on the highest speed and then – the chair downshifted on me! Slowed to a bumpy crawl! When I say to go 5 miles an hour, I mean it! Don’t decide without me! (I missed my train, as well as the fun of going fast downhill). Instead of zooming with the wind in my hair and feeling free, like a cyborg should, I was imagining some grim Authority Figures telling me that it wasn’t safe and I wasn’t allowed and then I imagined myself flipping them off!

You know what I’m going to say!!!!!!!

The motor controller should be hackable!

Or, at the very least, fine grained enough controls on the phone so we can program it to do what we want it to do.

Turbo mode!!!!! 6mph! And no sad, draggy-ass downhill downshift!

I’m not the first person to say this and I won’t be the last!

The battery was at 75% when I got home, seems fair enough but it depleted faster than I thought it would (it was not all THAT much zooming around the park.)

Picked up groceries today in pouring rain on an even steeper hill with leaves everywhere on the sidewalk. Also fine. I hung two bags off the back of the chair and had another heavier back on the footplate between my feet. It’s now feeling routine to switch to speed 2 when I go into a doorway. And I feel more at home on day 3 of driving around – it has started to feel like second nature.