Imagining the SF Disability Cultural Center

A bunch of us tonight got to meet with folks from the Longmore Institute to brainstorm about a Disability Cultural Center for San Francisco. What would we want it to be? What services or facilities should it have?

Please take the survey if you are local and would be interested in this sort of center!

“Local disability leaders are planning a community cultural center where people with disabilities can get services, build community, learn about disability history, and build disability culture.

Dream big! This will be the first center of its kind, so we need to hear from YOU.”

It was a lot of fun talking about what we’d love to see in this hypothetical new place. Meeting and event rooms, spacious public areas that are homey and beautiful with natural light and lots of seating, with lots of art, good acoustics (not loud or echoing), a cafe and workspace, some kind of workshop or maker area, references to other services, and so on. There would be built in equipment to livestream and conference in people remotely so that people who can’t make it to events could still participate.

History of a foot

The gradual releasing of something in my right foot, from a solid mass of clenched up muscle spasms that I couldn’t straighten out, stretched, massaged, rolled, smeared with Voltaren, ketamine cream, and marijuana salve, dragged and limped on since the early 90s, coddled with orthotics for its inward roll which destroys my shoes, folded over in a tremendous crunch in a surfing wipe-out at Corona del Mar while I was 5 months pregnant, walked on the edge of, stuck with torture needles by heartless neurologists, handshaking oddly with sciatica, blended into a shiver of allodynia with the outside of my calf and the superficial peroneal nerve, and the cruel roots of achilles tendinopathy, stuffed into a moon boot for a year propped up on wedges, I feel guilty for calling you my “bad leg” or “bad foot” as if I’m a parent playing favorites among children. It is not always “bad” but it’s always with me like an imaginary friend that I’m aware of as a separate entity with feelings and behavior of its own that I can’t predict or control. Embodied pain is a familiar companion. You get to know its personality.

Years of putting my foot in my partners’ lap to beg for them to try and work out a cramp. Electric shock zaps, buzzing, numb, a million needles, deep ache. Icy cold, suddenly burning like fire ants. The touch of even just air, though an actual breeze is so much worse, feeling like icy fire. When the touch of clothes or weight of a blanket is horrible but has to be borne. I want to protect this leg, don’t bump into it, don’t touch it, not even gently — I could hunch over it fiercely, snarling like a mother wildcat.

In some ways I think of how it felt to be pregnant. I didn’t realize it until my son was born, but while I was pregnant, I was not alone in my body. I was always thinking of him and aware of him as a presence doing things independently from within, next to me and separately animated and motivated, but still contained. A roller coaster you can’t get off, disturbing, rocking your sense of self and power over your body. It was a comforting companionship, even if that sometimes meant having someone hiccuping inside your abdomen at 4am. Then he was born and I was like, “Oh! You’re not there now! You’re somewhere else! I didn’t even hardly realize how much I knew you were there with me, in me!”

My awareness of my leg has some echoes of that experience. I am almost always aware of it (of the pain or odd sensations). I can block it out for a while, but the wall, or the box, to contain it takes effort to maintain. I am in an unwilling, more or less constant, dialogue with the pain. When I’m tired over the course of day it can be very distracting. Hard to focus, or listen to people, or engage socially even though I’m wildly outgoing, because I’m listening to my demanding embodied companion. I have to get kind of like Ninshubar and her little minions the kurgarra and the galatur are to Erishkegal. “Oh! my insides!” “Oh! Your insides!” Honestly, it isn’t even that bad, but it means I have to make space for it to happen. You can’t not listen to it indefinitely. That doesn’t turn out well. You have to have some empathy and be decent to it. A little acknowledgement.

Like having a magnetic sense, or knowing where north is at all times by wearing a little buzzer and compass combination, or another kind of sense or orientation inexplicable by the most commonly understood senses, I have this paranormal awareness, some region of my brain has overdeveloped to handle the signals and try to separate them from the noise, like SETI or a Very Large Array scattered around the nerve cells of my calf. It’s there, and sometimes I have to just stuff it all inside its box, or the underworld, until there’s space to listen properly.

A sweet massage therapist who has been willing to come to my house and just work on that leg, foot, ankle, for 3 hours at a time even, with subtle movements of the joint, loosening it strand by strand over the last few years. She wants to cure it, to find the magic button, to be a healer, to fix me, to re-route the channels. I want a little space, a little relief, gentleness and movement that isn’t a struggle. She doesn’t know the power of her healing, thinking it lies in another direction. It is ongoing, like those lumpy rubber rolling pins underfoot, ice packs, hot pillows, soft braces even in the swimming pool to save it from the sway of the water, the comforting hug of the night splint keeping something like an 85 degree angle, compression socks.

In the last year the solid feeling mass of pain eased up. It differentiated. I could feel specific muscles to work on. The part of my foot that was folded over in the surfing sprain “wants” to be folded “up” in a particular, non intuitive way. Standing on the steps, backwards, hanging my heels off the edge, rising and lowering. Braced against the door to try a painful hamstring stretch. Curled against the pool wall doing the same. Lying on the floor or in bed, my hips up on a pillow, legs going along the wall, feet in the air, trying to get them to calm down. Trying to be mindful as I step. What muscles in the foot are hitting the ground, which are working, am I pushing off? What is happening with my gait? In an odd way, I can feel new, different things, trying to name them and address them one at a time. There is more subtlety.

It isn’t that there are no good sensations. Like the good moments of being in the really, truly warm sun, with no wind, and my leg luxuriating in no pain, in a no-motion warmth, or buried in warm sand on a beach, with so many sensations that aren’t pain — it is extra wonderful and exceptional. Or what I try to do, and I’m sure Erishkegal would have been into, slathering my leg with several kinds of lotion, because why not, it’s something different to feel and a way to connect and it passes the time — capsaicin cream, that hopeful but ethereal Voltaren, maybe some lemon balm or something nice smelling, the funky hippie-couch stank of weed salve lightly disguised with menthol. Or, when I sink into a soft bed with feather light, warm alpaca comforters, leg encased in half of one quilt, protected, safe, away from the air or any roughness, with the promise of rest.

Last week I had gotten some groceries and then a flowerpot and some cat litter at the top of the hill. I didn’t have enough grocery bags. The cat litter and flowerpot were on my powerchair footplate and my feet resting on top to keep them from falling off, a bit awkward but I could do it for a few blocks to get home. I hit a plastic bag on the sidewalk just in front of the house, skidded sideways by just a little, and came up against the tree planter, bending my Bad Foot backwards in a hideous parody of the surfing fold and reverse massage move – The right outside half of my foot, the bones leading to my smallest toes, folded UP. A warm feeling flooded my ankle and foot.

I got back into the house heavily leaning on my cane not wanting to put weight on the foot. It felt almost good! How strange! It didn’t hurt! How was that possible? I put ice on it and stayed off it. Then realized the reason it didn’t hurt was because it was numb.

Of course, I have imagined the foot being gone. What if it… it just wasn’t there? What if I was in an accident and it happened to be that this foot had to go its own way? I would miss it, or would I? Would I have phantom pain, worse than the pain now? Surely, it would just be a whole different dialogue, a dialogue with a ghost. It would be even more omnipresent yet invisible to others like the guy who got chased around town by his own nose. It becomes a nonsensical thought, like having a sinus infection and wishing you could remove your sinuses, which of course you can’t since they are holes in your head and you can’t make a hole be any less than it is. There is no getting away from our embodiments.

At some point in the evening the numbness thawed and became needles jabbing. After the needles subsided a day later, it was like something had torn in many places, but a good tear. My working theory is that maybe some scar tissue was loosened up, even maybe some scar tissue around a nerve sheath? It’s not like I know anything. The shape of my leg awareness is different now. It isn’t fixed. But it’s wildly different. I’m playing with it, with stretches and tai chi and in how I think about weight distribution when I take a step.

That strange experience last week (still ongoing) made me think about my complex relationship with my leg, and its weird fluctuations of pain and functionality. Apparently the Queen of the Underworld will continue to strike hard bargains with me, and there really is no moral to the story and i’m not going to literally name my leg, it’s just that I had this lyrical feeling about my leg and wanted to honor it beyond its badness, and to respect how we coexist, like a witch with her familiar.

Heading over to CripTech

Heading over to the CripTech symposium now. Its full title is: CripTech: Disability and Technology in Japan and the United States – an International Symposium. I spent the morning yesterday with some of the conference speakers as we toured SF Lighthouse.

Technology has the potential to greatly improve access and the full social participation of disabled individuals in Japan and the United States. Both countries have invested considerable sums in these directions, but often this research is being conducted separately from the key stakeholders. This symposium brings together technologists, anthropologists, educators, and other researchers who are working on the nexus of technology, access, and design in Japan together with scholars, engineers, researchers, and activists in the United States for a four-day symposium and workshop in Berkeley, California, the home of the independent living movement. The majority of the participants identify as disabled people.

I’ll be speaking Saturday morning after the showing of Fixed: The Science/Fiction of Human Enhancement, on a panel with Ian Smith and Gregor Wolbring, moderated by Franchesca Spektor.


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.

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).

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.


(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.


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.

Whill-CI initial impressions

I took the Whill-CI to do some errands today. Here are my first impressions.

Driving with a joystick is getting easier. I still have the (wrong) impulse to push harder to go faster.

Definitely enjoying the extra speed and the comfortable seating.

The wobbly wheel feeling is still there. It seems to be the way the front wheels sometimes hit a sidewalk crack (one in parallel to the wheels, not the ones perpendicular). Small changes in slope also make a big difference in pulling the front wheels in one direction or the other.

Notching down the speed when going through a doorway or when in line worked OK for me. Opening doors is harder than it is in the TravelScoot, and I’m wider, so there’s less room for error. Definitely appreciated door-opening buttons today (automatic door at Walgreens, door button at Pinhole Coffee)

I am seated lower down than on the travelscoot, and can’t reach most payment systems in shops and cafes.

People look past me more, not even glancing up, like they are embarrassed. They cut in front of me in line automatically and try to push past me in a situation where they could have gone a different way, said excuse me, or expected a standing person to move aside. That’s not new, but it seemed worse today. It may be partly from the height difference.

I feel a bit odd not having something in front of me, curiously vulnerable.

But cool, at the same time, from my extra speed and my casual leaning back posture.

I do miss the unicorn horn and my decorations on the TravelScoot. Thinking now about how to decorate the CI to be a little sillier. Not quite ready to plaster it with random stickers…

Backpack straps work pretty well. It is a little harder to shop and put things in a bag when I don’t have front handlebars to hang a bag on. The under-seat basket is too rattly and loud for everyday use, so I took it off. I may try to get someone to make a canvas one.

I went to the dispensary, where the bouncer complimented my wheels; Walgreens to pick up stuff at the pharmacy; a cafe to have a pastry and coffee and work a bit (pulling up the arms of the chair to sit at the table, as they do so neatly in the promotional videos!), and up a long steep hill to Pinhole to pick up some ground decaf and the butcher shop for fish for tonight and turkey for the holiday. No complaints on the hill so far.

However… I do have a complaint. I did not magically materialize on a yacht and then go for a picnic with an elfin sweater-wearing lady carrying a bottle of wine at the Palace of Fine Arts. Where’s my damn yacht — instead I just got elbowed in the face in line at the drugstore as usual! hahahah! classy!

Tomorrow I’ll try riding the J train (which should be not too crowded), going to a different cafe to work and have lunch with friends. Wednesday I may try the bus. (The bus feels daunting so I want more practice before trying to maneuver in such a tight space where other people can be very tense about it.)

I went about a mile and a half total — the battery went from 97% to 87%.

New cyborgian exo-wheels

Still loving my TravelScoot over here but I am excitedly waiting for delivery of a Whill-Ci powerchair.

It seems relatively lightweight, enough so that in a pinch, I could take it apart and with help get it into the trunk of a cab. We’ll see how I do on the bus.

For everyday around my neighborhood, I hope it will increase the range I’m comfortable going, and that I will still be able to maneuver in small space. I used to go without too much worry to, say, 24th street (1 mile) or to Noisebridge (more like a mile and a half). The last couple of years that seems harder to me, and I tend to take the bus instead. Either I just have more trouble sitting upright that long without back support on the scooter, or, the jolting of pavement is too much, or both. Hoping the CI will help with that.

I tried it out at the Abilities Expo and liked it.


My fears are: What if it just isn’t that comfy for city trips of a mile or two? What if it is harder for me to deal with on the bus or on crowded buses? It will be harder for me to decide to take a cab by myself, without someone with me who is willing to take it apart and shovel it into a cab.

And last but not least I am afraid it is going to “talk” to me or beep annoyingly. I cannot think of any situation where I want my chair to beep or talk. So, I forgot to ask but I’m hoping the phone app will let me disable or mute that. If not I’ll be investigating how to make it stop by taking it apart.

It’s an expensive experiment. I’ll report back on how it is in daily use!

Dreams of stairs and elevators

Strange dreams of scootering down Valencia, not Valencia Street as it is now, but alternate-Valencia of around 30 years ago, out to do a quick errand, nearly but not quite picking up a nice brown striped scarf with fringe that was hanging over a bench (I figured that I should leave it for someone who needed it more). Everything was shut, and the streets were empty and ghostly in the middle of the night. The night had a wistful quality. Bright, moonlit, the iron gates with angular and scrolly shapes lit by soothing neon. I was happy to be there.

On my way to do this errand, I went up a side street, noticing that it was Elizabeth Street (which exists in the approximately correct location in the dream!) Elizabeth Street turned into mansions, difficult to navigate cobblestones, and ended in magnificent yet hostile giant flights of stairs going up the steep hillside. It was one of those wide multi-stage stairways meant to be monumental and beautiful, all in marble, spreading out over the hillside. I swore a lot & turned around.

I went back to the building where I was going to meet Danny to watch some scenes from a film be made (for a sequel to Superman where Superman was Jet Li, but in a powerchair). I had left this scene to do my errand and it was time to go back. There was no obvious way in, so I sneaked in via the back entrance and freight elevator, ending up in a back room, with people working, a tour group with badges coming through. I mingled successfully as if I had a right to be there, explored that level of the building, and found a second freight elevator to take me back to the film production studio. (Quite proud of sneaking back in successfully without fuss.)

In the studio as we sat in uncomfortable folding theater chairs, Danny explained things to me about what the film crew was doing. I was excited to see Jet Li. The people on stage kept trying to shoot a tiny part of one small scene where the actors were going down a hallway. I realized I was probably not going to see Jet Li do any sort of amazing martial arts from his powerchair because it was going to take all night to shoot the hallway scene.

It can be boring to read about other people’s dreams. They are so personal. Mine are often set in large rambling building complexes: 30 years after moving out of my housing co-op, I still get “like the co-op, but different” dreams. While I was walking pretty well for a few years I would still be using my wheelchair in dreams. I sometimes dream in Spanish, and I can read and write in my dreams. I’ve written stories and poems while on the verge of waking up and then quickly scribbled them in real life. And while I’ve been 99% using scooters since 2012, I still dream myself in my manual chair much more often. It still has a more “me” feeling sometimes. But this was a scooter dream!

The things that happen in my dreams feel like memories, not real memories, but like real feelings. They are atmospheric. If I dream of a completely non-existent person, I feel sad when I wake up that they don’t exist, but also amazed that our minds can come up with an impression of an entire human being. Dreaming of Alternate Not Quite Valencia Street gave me a specially happy and centered feeling this morning.