Experimental walk

It might seem odd that I got a powerchair and now am walking a little better than before. This might be from the better seating angle and back support or maybe an overall improvement from my stricter approach to daily physical therapy. (Gentle tai chi, eccentric loading, gentle core strengthening, and some stretches as I try to re-condition from the summer of illness/surgery.) In any case, I tried walking a block and back on nearly (but not quite) level ground. I’ve been planning to do this for a while.

The hilly part at the end of the block was more difficult, and my “bad” leg started to feel very strange, wobbly, and painful in specific places, as I think the slope uses muscles that never get any use. By the time I was heading back I started leaning on the wall for support as well as my cane. So it was harder than I thought it would be. It seems best to take this slowly, maybe even keeping it to half a block and back for the first week. I’m also not adding it to my “must do this daily” list yet – it is on the “optional” list until I know if it’s something I can sustain. If willpower could do it I would be kicking so much ass right now, I lie here sometimes and dream of how I will walk the 1 block down the hill and sit on the bench by the bus stop in the sun, and back, which is nothing to anyone else but Mount Everest to me. Must not be goal driven, but try things anyway and see how it goes.

(And anyway no one should climb Mt. Everest it is a gross and exploitative and selfish imperialist endeavor. Go do some manual labor instead that contributes to society.)

Enjoying all the paths

Took a bus and BART to my sister’s in Oakland last night, then went to a party, then BART home before midnight. Once again I was struck by how easy it was for me, when it was clear it would be 20 minutes before the next late-night bus, to just wheel on home from BART without even noticing the ride, because my new powerchair is so awesome and comfy. Though, an extra mile or two per hour of speed would be so perfect for times like that.

Then this morning I did the journey again. I saw the guy who lives on the street a couple of blocks from my house and we had a chat and then he followed me to the bus, getting on through the back door to flip the seat up for me very sweetly. An older lady on the bus got off at the same stop and told me how she was once stuck in the 24th St. elevator for 5 hours and now is too afraid to use the elevator.

At the 24th St. station (and I think the 16th too) I always marvel at the strangely inconvenient path for (wheeled) elevator users. The elevator lets you off a few steps from a ticket entry point, the midpoint of the concourse. But the only wide ticket entry point suitable for wheelchairs is at the very far end of the station. Then, you have to go all the way to the extreme other end of the concourse to the 2nd elevator to get to the train platform. If they would put a wider entrance at one of the entry points in the middle of the station it would cut 5 minutes out of my navigation of that station. No one cares and I don’t really care since I am motorized but if I were in a manual chair, it would matter since it is a long extra distance to push yourself! Still, seeing it be so non-optimal bugs me every time I’m in there!

On BART I noticed an ad for some bed sheets that promised the sheets are good for more than just sleeping. The picture in the ad showed three people’s feet, with socks on, friskily entwined as if they were having a fabulous, but dorky (naked except for their socks) threesome. Why you would want to be under a sheet in that situation is beyond me but maybe it helps them forget they’re wearing their socks during their strange orgy apparently happening on an ugly beige 70s shag rug. The socks were somewhat masculine coded for one pair, more polka-hearts femmy and with smaller feet in another, and then the 3rd pair of socks seemed more ambiguously gendered (yellow, medium size, non-hairy) so I guess that is a win for bisexual threesomes everywhere, even on a giant ad on the BART. (P.S. to the ad author: no one says “throuple” in real life.)

frisky advertisement

A man sitting under the amazing ad for kink-positive sheets reacted with miming exaggerated shock when I moved my right leg to wiggle my foot and ankle around as if he had just caught me in my extreme naughtiness of faking the need for a wheelchair. Dude! You caught me! I can move my legs! I’m totally not paralyzed! He stared at me, grinned, stuck out his leg, and waggled his foot around while raising his eyebrows. It being 9am after New Years Eve I didn’t really have the energy to engage so I played Threes on my phone and didn’t look up any more till he got off the train at Oakland West.

I varied my trip it a little by going to 19th Street Oakland and taking an AC Transit bus. My sister was saying that downtown would not be “exciting” on New Year’s Day, but it was just because it was so empty, fresh, and sparkly, and also because I am not often there and I like to explore all the pathways to get to a place at my leisure when there’s no time pressure, which comes in handy sometimes in the future when I will appreciate knowing exactly where the elevator and bus are at 19th St.

Downtown Oakland looked so pretty, clean from the rain, everything looking green as well, art deco buildings all shining in the morning light. I was at the bus stop near the Oscar Grant mural, across from a building with coppery green panels, amazing windows with sort of pointy arrow motif, and these black tiled and scuplted columns at either end. It was just gorgeous! I could hug that whole building!

Oakstop Building

I just had a look to see if I could find info about it online. LocalWiki to the rescue! It is the Bowles Building at 1715 Broadway. As always when I come across LocalWiki I think of when I just randomly met one of its creators, Philip Neustrom, in Ritual Roasters in like 2005. I was sitting across from him on some couches near the window, noticed his excellent laptop stickers & asked what localwiki was. From our conversation I ended up inviting him and Arlen to speak at Wiki Wednesday and I think later on in some similar wiki-ish context I met Britta Gustafson and Marina Kusko who both love wikis and hackerspaces and are awesome.

At my sister’s I kibbitzed on a game of Settlers of Cataan, ate steak and some gingerbread with apple butter, showed some details of nethack to my nephew, and demoed Inform7 for my sister who immediately started messing with it. It was fun to see them both jump in. When I left, my nephew was gleefully falling through trapdoors in the Gnomish Mines and I’m about to play some more nethack with him today. At the party at Susie’s house nearby I ran into a lot of people I knew. Polythene Pam was playing when I arrived & people were singing along to a song that was incredibly familiar but that I don’t know the words to. I had one of those pre-crone moments where you see someone dressed in YOUR EXACT OUTFIT FROM 25 YEARS AGO and freak out a little in a happy way because they are SO ADORABLE and ‘my’ cultural aesthetic has not died. Seriously this girl was in my same outfit and even in my haircut and middle-of-the-nose-ring and it made me want to cry and also want to hug her but that would have been weird. Sat with Katherine and Nabil, we petted Nabil’s reversible sequin pants (!!!!) talked with Emily a bit about how strange chronic pain or health issues can be, I met some people who were super nice, then I ended up talking with Asheesh in the kitchen, Yoz showed up, Gina showed up just as I was leaving early for my middle of the night journey home.

On BART a guy started yelling a lot but the woman with him (wife? sister?) was composed and philosophical. She rolled her eyes a little once in a while or patted his knee calmingly and acceptingly. I moved up to be right across from him because I thought he was not dangerous, just agitated, and I figured I could apply my de-escalating presence usefully (or deflect his attention from the teenagers he was yelling at) He had a few themes and varied them from Jesus, the bible, cops who kill people and their families which is tragic, homosexuals (could not tell if positive or negative) and how he loves us all (even if he sounds angry) and wants the best for us. I listened and actually so did a drunk guy nearby though he was more laughing at the yelling man, but he kindly called him brother and agreed with him I think doing the same de-escalation technique as I was. The woman next to him in an elegant headwrap carrying a cane then sort of cajoled him off the train. Mostly I felt worried about him and not the people around him (you could easily see someone taking him the wrong way and calling cops on him) So I wish them luck and hope they got home safe.

Home with quite a lot of motoring around, at 30% battery, wishing for just a bit more hefty of a powerchair battery or even an entire spare battery as insurance. Instead I am going to get an extra charger cord and carry it on the chair at all times in a little pouch. Though I don’t usually name cars and wheelchairs or my own body parts, I have decided to call the chair ‘Mr. Beep’ (borrowed from Ahmet the Blind Captain‘s kayak navigational system, because it’s just such a great name and makes me happy to say it).

Visit to the SF Lighthouse

As part of the CripTech symposium I went along on a tour of the Lighthouse for the Blind and Visually Impaired a couple of weeks ago. Chris Downey, an architect who is on their Board of Directors, kindly gave us the tour and the benefit of his insight into the architectural design of the space.

The lobby was designed to feel welcoming to people who might be coming to the Lighthouse for the first time, or really for anyone. It’s a spacious central space in the complex, connecting through a large, open, glass walled stairwell to the floors above and below. It’s possible to hear people talking or laughing from other areas so you are aware of social activity nearby in the space. I was really impressed with the auditory environment, as I really could feel the warmth of “other people are here” without it being distracting or echoing in any way. The walls were lined in some kind of sound baffle type of felt (I think) with a design of wooden slats overlaid that affect the acoustics of the space and are also quite beautiful.

After being there all morning, the street and then the food court we had lunch in were noticeably inhospitable in their acoustics. I realized I felt more relaxed and able to focus while we were on the tour of the building.

There is plenty of natural light, and also bright but not overwhelming overhead lights in long strips going north to south for extra orientation cues for partially sighted people. There were also interesting “light walls” with big glowing panels, and sliding controls which anyone can adjust to play with the color of the light.

stairwell with wall of windows

The flooring is set up so that there are navigable edges for shorelining through the hallways. Travel paths are polished concrete, and seating or other areas are carpeted with metal edges to give more information to cane users about navigating the space. The stairs have distinctive kinds of wood (I think different at the landings so that there is a different sound from a cane tap) and bright but not overly reflective metal edges for high contrast (again, good for people with partial vision).

One especially beautiful touch – the handrails around the stairwell were the softest, silkiest wood with an unusual and nice-feeling shape, slightly concave on the side facing the travel path, and then curved in a slightly irregular way – not a half-circle or half-oval but a more organic feeling shape to fit a hand. If you visit, don’t miss feeling the handrails.

Here’s a picture of Chris demonstrating another thoughtful and elegant touch: the reception area countertops have subtle niches in the edge of the counter to allow a white cane to rest there without slipping to the floor. The photo also shows the wooden acoustic slats that line the wall and the thin metal boundary between concrete travel pathway and carpeted reception area.

Chris Downey

We saw the event rooms, training kitchen, science lab which I think is for making things and doing electronics or computer workshops, and a little maker space with large braille embossing printers and 3-D printers. The art all around the space was really neat, a lot of it from the collection of Donald Sirkin, the guy who left over 100 million dollars to the Lighthouse in his will. There was also a memorial wall talking about Sirkin and his life. (On my to-do list: write a Wikipedia page for Sirkin.)

As a wheelchair user I also noticed the spacious design, since there were several wheelchair users along on the tour we would get into a few narrow hallways, but each time that happened and there was a sort of bottleneck, I was able to go around the circumference of that section of the building and circle back to the “front” of the tour. There were points at each end and at the middle of the building on each floor where the hallways opened up to wider spaces so there were opportunities to regroup and the space didn’t feel claustrophobic. I appreciate not feeling trapped and being able to move freely around a space!

A few years ago I wrote a short text adventure for an unconference space, along with obtaining a tactile map of the interior of the building. It was a simple hack job to give the layout of the rooms. I started thinking through ways to make a much better one for the Lighthouse. So, a textual game where you can walk through a space and develop a feel for its geography and layout. To be done well, this should integrate a holistic impression of the different spaces and how they can be traversed or explored, rather than some straight “visual description” information it would need to include the ways that a space can be experienced by someone blind or with partial vision.

Playing with similar ideas a bit in Inform7, in writing “room” descriptions from the point of view of a wheelchair user, which for me, includes not just an awareness of slopes but of the feel of surfaces and whether they are pleasant (marble is amazing) or jarring (literally). One or two words can indicate that “you” the reader are wheeled. I think that can have an interesting effect on game play. For the Lighthouse, I might try just describing the lobby and a couple of connected rooms as an experiment. Since I am not blind or vision impaired I would need to pair up with someone or do lots of interviewing folks to do this project well if I did it for real! My 4-room experiment of being in a sort of fantasy world game setting, on wheels, gave me a little shiver of recognition to play through, even though I had just written it myself and it was not a surprise be in a garden and then to see the words “You roll into the gazebo.” Yet it was still a surprise, a pleasantly non-alienating one. Is there a word for de-alienating in a healing way, that makes you realize the ways you are alienated (from yourself or from participation or acknowledgement) in default representations? It made me think that representing “you” the player of interactive fiction as disabled along different axes (as living and experiencing reality in particular ways) could be a really powerful game.

Thanks again to Chris and to the Lighthouse and to Karen Nakamura who invited me to CripTech! I particularly enjoyed the tour and am still thinking hard about aesthetics and universal design & how our concept of whose experiences are important affect design & engineering decisions. A beautiful example of technology in action to make a pleasant and functional environment. If we do get a San Francisco Disability Cultural Center someday, I hope it will take the example of the Lighthouse and follow their lead!

In which I rant about a minorly negative random encounter

Don’t be this weird hostile bus stop lady….

I was going to the bus stop yesterday, on a wide sidewalk on Mission, and I passed a couple who were standing by the bus stop bench about to sit down. I was hugging the wall by the pizza place and nail shop and about to turn to wait for the bus just a little ways down from the bus bench. So, I was something like 8-10 feet away from the couple.

The woman looked up as I passed and said “OH!!! Sorry!!!! I didn’t see you!” and kind of mimed as if she were getting out of my way. This was weird, since she wasn’t in my way, I wasn’t in her way, and there was nothing indicating that I was about to be anywhere near them.

“Uh…” I said, super coherently. “Well, I saw you, so, ok.”

Then I waited for the bus without anything further happening but I could see her weird discomfort. She was still bothered. She kept looking at me and kind of acting agitated. Her “Sorry!” was actually not a sorry but was more like a hostile accusation as if I had done something wrong and actually I was supposed to apologize.

This happens all the time (basically a microaggression). Like what happens when someone exaggeratedly holds a door open for me, and I don’t want them to, and I have to ask them to move out of the way because they think they’re holding the door open but they are literally blocking my path through the doorway and I don’t want to run them over. Or even if i can get by, I don’t want to put my face in their armpit.

People doing this kind of thing aren’t helping — they get angry if you don’t respond “correctly”, and then it becomes clear that they started out angry with their bogus offer of help. They are full of resentment and are uncomfortable with my presence and they want me to behave in a way that is apologizing for my presence.

Once you’ve experienced this multiple times a day every day, as you are just minding your own business, you will know what I mean.

And, actually, I’m not always so proud, I often act in a placating manner to make other people comfortable, especially in a crowd, while waiting in line, on the bus, and so on, because honestly it just makes thing easier. For example I normally feel like I am “supposed to” thank the bus driver at least 6 times while getting on and off the damn bus, once at every stage of the interaction like, they see me and start to lower the ramp or lift, they then offer help of various kinds or do stuff, or they give me unneeded (bad) advice or warnings, and I have to acknowledge it and I try to be polite. Probably, y’all get on and off a bus with maybe one “thanks” if you exit at the front but that is not my experience.

So, back to our story.

Time passes. I sit at the front of the bus playing Pokémon, and everything is remarkably peaceful for a middle of the day ride on the 49 bus. The driver remembers I’m there and also, I remembered to push the “ramp please” button well ahead of time and there is only one guy in front of me who is kind of trapped and has to get off the bus to let me off by the ramp, but the driver still yelled at the top of her lungs, “WHEELCHAIR COMING OFF WATCH YOUR FEET I SAID WHEEEEEEEEELCHAIR COMING OFF” I thanked the driver and said have a nice day. While the yelling is often unnecessary and unpleasant it does get the job done. The thing is I can say “excuse me” or “con permiso” myself to the people who I need to get by who are usually looking right at me anyway and can tell I am intending to get off the bus and can see perfectly well what needs to happen.

OK so, now I’m off the bus and it’s an even wider sidewalk than on Mission where I started. The sidewalk is at least 15 feet across. I suddenly realize that same couple who were at the bus stop with me had gotten off at the back of the bus and were on the sidewalk, again near the curb while I was on the far right side of the sidewalk by the buildings. The woman fidgeted around (not sure how to describe this – but it’s like someone doing a lot of “pay attention to me!” body language like they are about to speak to you – as if awkwardly trying to get the attention of a waiter including being frustrated at not already having that attention). And she did a little laugh and said “Oh!!!! I’ll TRY not to get in your WAY this time!!” and mimed “getting out of my way” again even though I was nowhere near her and not aimed anywhere near her.

It was so irritating!

I said “You weren’t in my way before and you’re not in my way now” and stared at her with what was probably the rudest face possible of incredulousness as if a cartoon though balloon that said “You’re an idiot” was floating over my head.

“Gaaaaah! I was JUST JOKING!” she said huffily…. making a little scoffing noise. Her husband stood there looking awkward and probably wishing he could sink into the ground with embarrassment.

I did not behave with the proper level of humility for this beeyatch to accept my presence on the public sidewalk!

I beetled uphill at a goodly clip, my maximum 5 miles per hour, wishing I were a goddamn rocketship to get away from this rude person even faster!

Lady… Let me just be clear…. Madam Fussypants, stick-up-your-butt, REI-clothing-wearing-probably-a-unitarian-white-lady-who-loves-calling-the-cops lady from my neighborhood…..I can snap judge you too! (Thusly.) I dunno what your deal is but you want me to perform some sort of role here for you that I am unwilling to perform!

I am notorious for chatting in a friendly way with total strangers on the street but she was such a jerkface that instead she got my “fuck off” attitude and nearly got me to stop dead in my tracks and pop off in an enormous harangue that would not have helped her obvious feeling of discomfort with my MERE PRESENCE IN THE PUBLIC WORLD.

Whatever demon she is wrestling with, whatever fear of disability…. I wish she would go deal with it in therapy and stop letting it hang out all over the sidewalk. I can’t be the only wheelchair user she ever sees in this town especially if she takes the goddamn 49 bus! What is her problem!

As my mom would say… Some people just need a good slap!

OK, so, all of y’all, don’t do this shit, it’s ridiculous!

Thanks for coming to my TED talk.

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.

CripTech-Poster-small

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.