disability – Page 9

AdaCamp meanderings

June 7, 2013 Liz

Tonight was the AdaCamp San Francisco reception, at Google on the 6th floor. We had some food and beer, talked a million miles an hour, and got a short nice speech from the Site Reliability Engineering team. Thanks Google SRE for sponsoring the dinner!

I got an awesome sticker from somebody that says “Intersectional Feminism Fuck Yeah” which is basically the best thing ever. It goes well with the “Open Source Fuck Yeah” sticker on my laptop!

Hung out and talked with SO MANY PEOPLE. Great conversations about mapping, the Hate Map, Open Street Map, open source hardware kits for fiber arts people, web accessibility struggles in open source, all kinds of gossip, new feminist hackerspaces starting up like the Seattle Attic and one coming soon in Portland (there may be an SF one someday … stay tuned). Ciberseguridad in Mexico for feminist activists, scooters…. I can’t remember what else but I was never bored for even a second. Everyone was so nerdy and happy. I can’t wait for tomorrow!

This week I had fun in my “spare” time working with some tactile mapping folks from Lighthouse SF and the AdaCamp organizers. It was somewhat harder than I thought and was my first try at mapping an interior space collaboratively instead of just writing descriptions on my own. So I learned a lot. Here are some tactile map pics for the sighted. I did not know that braille was be printed double sided; the two sides are offset.

adacamp tactile map — A tactile map of the 15th floor of the Mercantile Exchange building, with braille printing.

tactile map key — A map key that says “Symbols and Abbreviations” with braille printing.

I also experimented with writing a textual description of the space and its rooms and exits, which an attendee had asked for. I volunteered to do this for inter disability solidarity, but also because I enjoy writing interactive fiction and MUD areas very much, and have lots of practice at it. The requester mentioned the possibility of different layers of description, maybe on different pages. I ended up making a single text file as The Ada Camp Text Adventure, where each room was marked with “h2” and an anchor tag. Then I hyperlinked the room names. Each room has a short description and a long description. The long description isn’t marked separately but is just in the second paragraph for each room. There are probably more elegant and useful ways to approach this. It would be interesting to collect other examples.

In the descriptions, I did not use 12 o’clock and 6 o’clock as I read was common for way finding and orientation for blind and visually impaired people. Instead I tried to have one clock orientation at the building entrance, and then switch to North south east west terminology. I tried breaking the word AdaCamp into two words as I felt more confident it would read out correctly as Ada Camp. Perhaps it is not different enough to matter. Consistency in the descriptions and style of describing exits may or may not be important. But I am not sure. While the text adventure’s recipient said it was great, I am not sure that means it is useful. To know how to do this usefully, I would need to iterate with map or text adventure users willing to spend significant time exploring and talking about it. But, as I am probably reinventing the wheel, it would be good for me to read more about what other people do in this area too.

What I’m wondering is, could I do this in a useful way for future events or for spaces I inhabit regularly, like Noisebridge, or WisCon? If so, then more people should do it for public spaces or events and I can tell them so. Also, it would be fun and interesting.

My dream from some years back is that Open Street Map would have text adventure markup, so that particular places in very fine grained ways could be described. It would be fun for people with any level of vision to walk around a city, or a campus, like a MUD, or to look north from a particular address and see what there is to see. Maybe that could make audio navigation descriptions more useful.

I keep saying “useful” and that is because I have seen so many pointless wankery “design” type of oh what a nifty thing this would be for disabled people things that maybe also make a Statement, but they aren’t really nifty, and suck, and are a waste of time and money and energy, and they are very annoying. Usefulness is much nicer.

The bottom of my ramblin' shoes

February 3, 2013 Liz

I had ambitions today to be intellectually productive but am still convalescing from this annoying cold. Since I don’t have a fever and am getting better, I went back on immunosuppressants. This weekend I had a fantastic time with friends including Els from Vancouver who is on a book tour for Purim Superhero and who has regaled us with her children’s librarian ukelele songs!

Nate loves aliens and he really wants to wear an alien costume for Purim, but his friends are all dressing as superheroes and he wants to fit in. What will he do? With the help of his two dads he makes a surprising decision.

Els brought me several books: Greengage Summer, The Mystery of the Whistling Caves, Tink, (all of which I read last night while waking up to cough ) and The Brontës Went to Woolworth’s which she explained as a fabulous feminist sf classic and which I am saving as best-for-last. Greengage Summer was fantastic… Anyway it is lovely to have her here!!! We know each other from early blogging days, back to 2002 or maybe before.

Yatima picked me and Moomin up yesterday to give us a ride, which meant we could go to Hazelbroom’s son’s 10th birthday party. Fabulous. It was odd and beautiful after a week alone and much of it with laryngitis not able to talk at all (writing notes for bus drivers and pharmacists) to have so many people come over or take me out.

I felt very grateful this weekend as I thought about things I can and cannot do. These days I can pick up a teapot full of tea with one hand and pour the tea. It still hurts, but I’m able to do it. Voltaren gel gets me through most days.

Things that especially hurt my hands, that I still do anyway:
* washing dishes
* getting wet laundry out of the washer
* shaking hands with people
* bumping my fingers into anything
* doorknobs
* holding hands
* holding a book
* typing (BOO.)

I mean to celebrate feeling better or adapting rather than complain. It is all still there but seems less forbidding than everything was last year.

Last year at this time I could barely shuffle in inch-long steps, was terrified of getting in the shower, and was just beginning the most intensive period of strapping and unstrapping my ankles endlessly from night-boots to walking boots. I think it was October before I was really walking around the house without the wedges and boots – barefoot! And in December I finally started to wear shoes outside of the house. The feeling of coming out of REI with these furry boots (3 sizes too big, so they don’t rub into the backs of my ankles) was indescribable. It was good to have real shoes. It still gets me down to be in pain every day and that I can’t go out and participate in things around town that I’d like to go to. In the mornings it is just crushing pain and sometimes for hours before i wake up. Moving very slowly and stretching, drinking coffee, Voltarening my knees, ankles, and hands, doing very slow light housework or tidying up as a warmup, till I unstiffen. My mid-back is increasingly hard to unstiffen so I can be really straight backed but I can usually get it within an hour or so. This sounds like complaining (and half-way is), but I mean it as part of a package of gratitude that my ankles are good enough that I can walk around the house and move enough to limber up!

This week I also read Melina Marchetta’s fantasy trilogy The Lumatere Chronicles, and am in the middle of another Hugh Howey book I somehow missed on the first go-round — Halfway Home. It’s completely great. Though — I do wonder that the vat-grown blastocyst colonist boys on the ship are specially taught to police each others’ gender roles and sexuality. Howey’s exploration of that is pretty interesting.

I also started (for the 2nd time) to read Daina Chaviano’s Fábulas de una abuela extraterrestre. I read literary prose very slowly in Spanish but I get along decently. Am inspired in this by how my dad re-reads Don Quixote over and over and has now tackled Walter Moers City of Dreaming Books in German!

Moomin and I had an unexpectedly intense conversation as we contemplated what books we would recommend to Els while she came to visit. We both were commenting on how amazing it is that you can be in a book and it is like you are in it, in another universe entirely and then you don’t want to finish the book, and after, are homesick for the book, actually feeling pangs of loss. And that it is miraculous that other people have all this stuff going on in their heads even as we have very boring conversations about it being a nice day or what we had for dinner, and that some people manage to whoosh a whole universe of a story *out* of their heads into a book which then magically comes into our head. We don’t even need magic or telepathy because books already do this. It’s amazing. We both embarrassingly teared up a little.

Listened to Bach cello concertos and Hank Williams a lot as they are soothing when I’m sick. Jimmie Rodgers is also good but mostly it was Bach on repeat. When I was a teenager I used to rig up my record player to play Switched-On Bach on repeat all night — still the most comforting thing I call to mind when at the dentist or having an MRI or something tedious like that.

It is comforting that everyone else in this town is sick too not because of weird disabled person schadenfreude but just so that my own dropping off the face of the earth from a head cold does not make me look completely wimpy. All I ask is not to lose a month out of my life to yet another round of bronchitis. In my head everyone is judging me for not being tougher. They probably aren’t. Pain has worn me down a lot. I wish it hadn’t. I hope I get more mojo back with these new meds. While it is nice to hope for that I don’t count on it and realize (this is so cheerful!!!) that we are all getting older anyway so it’s not reasonable to expect everything to be “fixed” and I have to think fondly on my past selves, what I was capable of and not at different times.

I feel super appreciative of my friends and everyone awesome in my life.

Hurricane relief: Do something!

November 1, 2012 Liz

Aleja and I met online through GimpGirl years ago. I got to know Nick as well; we chat often about space exploration, writing, and comics. We have mutual friends like Jen Cole and Ron Sidell. We met in person in New York finally! Both at the BlogHer conference and then over Thanksgiving while I was in town for the Committee to Protect Journalists fundraiser.

On Monday I was asking Aleja and Nick if they had anyone with them. Akemi had come over to stay with them through the hurricane but they did not expect at all to lose power and water. I was on vacation in Mexico. My electric mobility scooter had broken, so I had limited ability to go places and was spending a lot of time online following the news and writing to friends.

From my work during and after Hurricane Katrina I know how fast situations can deteriorate and how important logistics are. Simply having people on the spot is amazingly useful. Once they are there, they can see what needs doing. I offered to reach out on my social networks to see if anyone near them might be able to come over and help out. At that point I began to realize the complexity of what support they might need, as well as many of the pressures against asking for help.

Personally, I have a ton of support and resources, yet it only takes a little change in my circumstances to unbalance the whole house of cards. When my needs change, or become more visible, other people sometimes then begin to treat me like I’ve crossed a line into complete loss of control of what happens. I didn’t want that to happen to Nick, as it so often does, and for him with life threatening consequences. And for Aleja who I love dearly I could picture how outsiders would not be able to see the level of work she does and how necessary it is. We value our independence, including our ability to plan and ask for help. But for me personally that comes with a confusing mix of pride and shame, fear and anger, for the times things don’t go as I had planned and predicted. I struggle with this. People are very, very disrespectful and I don’t like to be dehumanized. But to get along and survive, sometimes we have to just eat disrespect. For Nick and Aleja, crossing that line could mean someone would try to force Nick to evacuate without real infrastructure in place to support them and his health care, and his breathing. (And in fact, that just happened. TWICE.) Being evac-ed could kill him, but even if it didn’t, would it result in some bureaucrat or social worker deciding he should be incarcerated — forced into an institution? Would it disrupt their lives to the point where Nick and Aleja wouldn’t be able to come home together? (They already can’t get married.) When I’m casually dehumanized I lose a little dignity and I get mad. When Nick is, his life is on the line. William Peace describes the dangers of the medical model of disability very well in his blog Bad Cripple, which I recommend highly.

In this photo Aleja and I express our feelings about oppression and ableism by flipping them off with a smile:

Anyway, I worried that I was pressuring Aleja to consent to my sending in some stranger (though a friend of a friend) into their home whether to help with personal care or just to bring them food and water or try and find a way to get power to Nick’s breathing equipment. As soon as they said it was okay, I put out a call. It propagated quickly. Suddenly thousands of people were twittering to me or messaging me on Facebook. I was frantically trying to apologize to Aleja over IM for embarrassing them since my twittered request for help went way out of control. Over the next few hours it became apparent that a support network would have to mobilize. And it did! Three out of the thousands were able to offer practical help rather than just saying “Call 911! Call FEMA” (yeah right!!!), and they joined what was quickly organizing to be a team effort from people who hadn’t known each other before. I was glued to my computer talking with people, gathering information from many sources and redistributing it to others, trying to spare Alejandra’s and others’ limited cell phone batteries. Len Burns became my point of contact with Aleja. They needed sterile water, rides for their nursing/PCA staff because the subway was not running, cash for all sorts of things, drinking water, batteries for flashlights, and many more things that had to be brought up and down 12 flights of stairs. Leslie Freeman was the first to get there, I think, other than Akemi. They are both beyond awesome! My friend Lauren who is a journalist and feminist activist also made it there.

Then I began following Crystal and Sandi Yu’s epic road trip in the middle of the night driving from Boston to New York City, stopping at every Walmart, AutoZone, and truck stop on the way to get supplies. When I realized Crystal is also a wheelchair user and that she and Sandi had barely met, I was cheering them on so hard and felt a deep happiness to find these kindred spirits doing something I could at least support from a distance. I donated quickly over PayPal and Crystal was able to use the money right away with a PayPal debit card. Meanwhile, Amalle was coordinating an ever growing Google Doc of information about how to help and exactly what to do. There was a schedule of people volunteering for shifts and to drive Nick’s nurses back and forth from home to work.

Crystal and others also began, at some point, getting money from Portlight — where I am also now donating! Carrie Ann Lucas connected the group to Portlight. I really like getting cash directly to people in a crisis and to “unofficial first responders”, as I will never forget the amazingness of handing wads of 20 dollar bills (given to me by strangers who read my blog) directly into the hands of evacuees in the Houston Astrodome so they could get to their families, buy diapers and gas, and get the heck out of that refugee camp. Aside from the help…. they were fueled by trust. No fuss, no forms, no proving things to people behind desks, just direct practical help.

I love Crystal’s quick and detailed writeup of the history of how she became involved and what she and Sandi did, from Crystal’s blog LittleFreeRadical: UnconVENTional Aid: Helping Nick Dupree, Social Networking Style. I would love to hear the stories of others like Leslie and Amalle and Akemi who are doing so much as well as what this has been like for Aleja and Nick. It is important not to lose our history.

On Wednesday I started doing research on legal issues for Len Burns, to see what options existed for protecting Nick against other people’s non-helpful 911 calls on him, and discussed battery tech and power inverters with other people active in the efforts. At some point Tuesday or Wednesday I Facebook-friended and began talking with Leslie and then Crystal and others working to help; I could see their comments on Aleja and Nick’s and Len’s posts. Now I’m happy to know them and can tell we have a lot in common — our willingness to jump into a situation and improvise, for one! And I understood Bethany Stephens‘ use of the word “cripfam” a bit more deeply because I felt that recognition of friends who will go all out, who know what “solidarity” means…

Meanwhile this happened: Invalid New Yorker’s Pals Keep Life Saving Gear Running. While I can see the effort this reporter made to be helpful, the disrespectful language and the way the story frames Nick and Aleja both made me furious and sick to my stomach. The reporter couldn’t even be bothered to get a quote from Nick but described his very act of speaking as “burbling” etc, in ways that are classically dehumanizing… as non-speech, as non-human, as alien other. I can see reporters will think this an interesting story — and it is, but not like this, not this easy win at Disability Reporting Bingo. Most of the people helping here are also people with disabilities, for example. There are stories to tell about technology, the Internet, hardware, proprietary medical tech, the connections to OccupyWallStreet and activism, and many other complexities. I wrote to the reporter and his editor, and commented (mildly, for me, and without swearing) on the story.

My main usefulness has been to bring attention to the situation and get others involved. People pay attention to my thoughts on this because of my history of public speaking, and blogging; my involvement with hackerspaces, DIY technology, and activism; and because I did some useful on-the-spot work for Hurricane Katrina relief. I also was able to donate money directly to Crystal and to Portlight. Please pitch in if you can, to share resources and skills, because the situation over the East Coast and NYC in general is still deteriorating as gasoline and supplies run out across the area.

Here’s how to help right now: Lending a Hand

Big organizations like FEMA and the Red Cross do useful work, but usually not at this stage of chaos on this individual level. A week and a half from now they’ll be in charge whether they’re effective or not, but right now it’s anarchy, so we have a chance to be the most useful with direct action. Just go…right now while it’s crucial… go to wherever the problem is, LISTEN TO PEOPLE… and pitch in. Don’t just donate some old clothes or cans of food as if you can dump your trash on other people and it will magically make them middle class and give them all the infrastructure of your massive privilege! Go to gather information, find out what is needed, improvise, and DO SOME WORK.

Wheelchair and Scooter Hack Day

October 3, 2012September 24, 2022 Liz

The Hackability group met up at Noisebridge this weekend to work on modifying, maintaining, and otherwise hacking our scooters and wheelchairs. This first meetup was just 4 of us, Ian, Zach, Susan, and me. Ian and I talked first about projects we would like to do for his powerchair and my scooter. Susan is an engineer, inventor, and hacker who has some great ideas about improving power and making a regenerative braking system for my scooter. Zach came prepared to give us a really great talk which I’ll try to describe from my notes.

Zach made the point right at the outset that we can think of scooter hacking as falling under two categories. The first is for comfort and repair; things that are necessary. The second category is mods and upgrades; in other words, extra fun stuff. About comfort and repair: He talked about how long it took him to really listen to his body and pain levels and know what was irritating about his mobility devices, rather than accepting what he was given as “just how it is”.

For him, stability is an important factor. Parts wiggling on his scooter caused more pain for his back and legs, while rattling was distracting and annoying. He then took the seat off his scooter and I demonstrated my seating as well, to show how you can stabilize the seat housing pole. Mine was vastly improved simply by wrapping in a few layers of duct tape. Now, on the bus, my seat doesn’t wobble back and forth forcing me to use my low back muscles to cope with the sway of the bus plus the erratic seat motion. Many of Zach’s other mods were done with cheap and easy to find, objects like zip ties, heat shrink tubing, and blocks of styrofoam. He is a genius of finding free or cheap things to hack! His repairs look sturdy, neat, and durable. (Unlike my cardboard and duct tape repairs which are such a hot mess.)

He had recently put a bigger motor into his scooter frame. The motor heats up and has a fan to the side next to one wheel. Jacket sleeves, backpack straps, and other stuff was getting caught and tangled in it. Zach ended up replacing the fan with a blade from a computer’s cooling fan, and making a curved metal guard for it out of what looked like a thin plate of metal from a hard drive casing.

We digressed for a while into talk about batteries, their expense, how many amp-hours our batteries have, ideas about bolting extra batteries onto the side of my scooter and wiring them into the existing removable battery case. The lack of cheap smart chargers means that most people with mobility scooters have ineffective chargers which shorten the batteries’ life and effectiveness. My batteries, new in March, are already dropping in voltage output capacity even when fully charged, so my scooter is laboring going up hills or for any significant distance. Susan has plans to design an affordable smart charger. We’ll see how that goes! For more on batteries and charging, read up on Battery University.

MOving on to our second category of mobility device hacks: The fun extras. Zach showed us some of the cool stuff on his mobility scooter, like how his wire mesh basket is stabilized with a flat metal plate with screw holes and some hot glue. I suggested black latex paint might be a good alternative to hot glue, and may try that for my own basket, which squeaks annoyingly against its brackets. We talked about alternate handles for scooter grips and controls then admired Zach’s fancy lights. On the more simple DIY side of things, he has a small battery operated LED light meant for a bike, velcroed onto the side of his scooter dashboard. Advice: use the real Velcro not the dollar store kind! As a quite complex lighting hack, he has strips of LED lights which are wired into his scooter’s main power supply and through a homemade circuit board which steps down the power.

Another complicated hack we discussed was in building our cruise control switches and stabilizing the forward and reverse levers which make the scooter go. These levers on most mobility scooters use a non-precision potentiometer. The screw on these things goes out of whack, which can be very annoying.

I have to digress for a minute to explain scooters, or at least the scooters I’ve used and seen. They have levers on the handlebars which connect to a trim pot and the main power supply from the battery. The power also obviously goes to the motor. There are no brakes. There is a solenoid of some kind which stops the motor. There is no neutral gear so if the motor stops, the scooter stops. But there is also a printed circuit board in the mix which has “safety features” programmed in. In practical terms this means if there is any interruption or big fluctuation in the power supply, or you hit a huge bump in the sidewalk, or I don’t even know what else, the motor cuts off. When you start your scooter and the centering of the levers controlled by the potentiometer is just a little bit off, the motor won’t start. To adjust and fix the potentiometer’s screw, you have to take the entire plastic housing off of the scooter’s controls.

Anyway, Zach’s approach to this problem, from advice from our friend Jake who is a fabulous hardware/electronics hacker, was to add a 50K trim pot in parallel with the existing one. He placed it so that its screw faced outwards, and drilled a hole in the plastic casing so that he can adjust it with a screwdriver without taking apart the scooter. Brilliant!

His other mods include a USB charging port on the dashboard and a scooter-charging port also on the dashboard rather than low on the scooter frame. We ended up discussing charging a lot more, and what gauge of wire is necessary, but I don’t have good notes on that.

At that point we looked at Ian’s powerchair and discussed some of its features and problems. It is a much more complicated beast than a scooter, and a couple of orders of magnitude more expensive to buy and get repaired. Powerchairs have two motors controlling the wheels so that they can turn in place, while scooters tend to just have one motor, with forward and reverse. Powerchairs seem to have much more powerful batteries and have more complicated control boards hooking up the joystick or other single-hand control with the power supply and motor. Ian’s chair has a fancy color screen hooked up to the joystick control but it seems unhackable. Or at least not without risking ruining the chair’s software. It seems a shame that it is not easier to to software or firmware mods that we could experiment with and roll back the changes if the experiments don’t work out.

The thing we worked on was a power plug in the back of Ian’s chair. It is an Anderson connector and didn’t work, maybe from being shorted out, or maybe because it is wired wrong. We thought about cutting the wire and replacing the plug connector or reversing how it was wired. We took off the back plate of the scooter housing to see if there was anything obvious to do that wouldn’t mean we had to take apart the entire chair. Hooray, there was a fuse between the plug and the battery, and it was blown. Zach found us a new fuse from the many tiny parts bins in the Noisebridge hack shelves. Ian replaced the fuse and put everything back together. It tested out okay with the multimeter this time! But the plug that he wanted to use with it, which is a DC/DC power converter from an electric bike company, wasn’t wired the same way. We concluded it would be best to either buy a new part ($50) or cut apart the bike part to reverse its wiring to the connectors.

Thanks very much to the role playing game group in the other classroom who moved most of the tables out of the room for me before our meetup!

It was a great meeting with a mix of lecture, discussion, theory, and hands on practical demos and work. If you would like to join our mailing list, here’s the link: Hackability mailing list, for DIY hacking, modifying, and fixing existing wheelchairs, scooters, powerchairs, and other mobility or accessibility devices. If you’d like to come to our meetups in San Francisco, you are very welcome. Please join the list and let us know!

Cruise control hack on my scooter!

August 9, 2012 Liz

My mobility scooter has a lever which when pressed moves the scooter forward or backward. There aren’t any brakes; I stop by taking my hand off the lever. So in order to keep moving I have to keep pressing this lever. Over time, that hurts my hand and arm. It’s also just tedious! So I wanted to copy what my friend Zach had done and build a switch that would keep the scooter moving. He said it was pretty easy. I took the front casing off my scooter dashboard to see what it looked like in there. Kind of scary, a tangle of wires. If I messed it up, I’d be stuck. I put it back together unwilling to experiment till I talked with someone who knew what they were doing.

When Zach and I looked at it we took that cover off again and set it aside. The wires were in clusters of three with easily detachable connectors, labelled CN1, CN2, CN3, and so on. CN3’s cluster of wires went to the keyhole, which I could see is very simple. In fact I would bet I could stick an audio jack or some other piece of round metal into the hole and start the scooter. CN2 went to the potentiometer that sits between the levers for forward and back. In other words that lever moves a precision screw that goes into the potentiometer to change the resistance going from the battery to the motor. CN1 went to the forward and reverse lever, and that’s where we wanted to put my switch. We labelled some of the connectors with a Sharpie.

The existing potentiometer was 5k Ohms (it said this on the bottom of the part.) There were three wires going to it; white, yellow, and blue. Yellow went to the forward lever. Blue went to the reverse lever. White was the wire they had in common. Between the white and yellow wire we measured 800 ohms. Between White and blue we measured 4K8 ohms. We would need to duplicate that with the new switch.

Rummaging around in the hack shelves and bins and tiny drawers in Noisebridge we found two potentiometers with tiny screws that Zach pointed out were very finely adjustable. Precision trimmable potentiometers or trim pots. We ended up using one for the 4K8 and one for the 800 side of our switch.

Here are the tiny drawers and bins we looked through! Imposing, aren’t they?

And the Pile O’ Junk that overflows from the hack shelves:

We found several switches, none ideal, and none that looked easily mountable on my scooter’s dashboard. Jake, who is great at electronics stuff and builds robots, immediately found us the right thing, a single throw double pole switch. The switch looks like a little bug with 6 legs — the connectors we soldered wires to — and the flippable part of the switch sticking up from its back. Here it is all wired up, before the hot glue went on.

We replaced one of the duplicate blue wires with white. (Which I found by rummaging in the hack shelves and bins.)

We realized at some point that the resistance didn’t match up perfectly because we had measured it all while the trimpots and switch was unmounted from the wires but we needed to measure and adjust the trimpot screws while it was connected.

Before we hot glued and mounted everything we put a 2×4 under the center of the scooter to prop it up for testing – so that the wheels could spin without the scooter going anywhere. It worked great when we flipped the switch! Very exciting!

We then dabbed hot glue over the switch and some of the other connections with a glue gun. The glue is kind of rubbery and would peel away easily. It should stop the solder from jolting loose, though.

When we went to mount the switch, we realized it stuck out further back than we had room for in the plastic casing. But it would fit really well in the area for the keyhole mechanism, which was shorter. We ended up drilling a new hole for the key hardware on the lower right of the dashboard, and enlarging the former key area to fit the switch. This took a little bit of adjusting and re-drilling with the dremel while we held the front of the plastic case in place. It was very useful to have four hands. My extremely bright LED flashlight came in handy at this stage.

Along the way we also replaced and added some washers to hold everything in securely. It was great to have access to all the tiny bits of hardware that Noisebridge has free for the hacking and to all the tools in the shop and electronics lab.

Thanks so much to Zach for the awesome tutorial on potentiometers and resistance in circuits, and for the hacking help! You can see part of his super slick dashboard here, with cruise control switch, usb port, and other useful charging ports as well as a cute Totoro keychain.

By installing “cruise control” I basically bypassed a crucial safety mechanism of my scooter. I am trying, each time I flip that switch, to repeat to myself over and over, TO STOP, FLIP THE SWITCH. Three times now in the past few days I have forgotten it is on, pressed the lever automatically with my right hand while cruising; then taken my hand off the forward lever only to be unpleasantly surprised that I don’t stop. (Until I crash into things.) On day 1 I was super careful. On day 2 I was lifting up my backpack while stopped, and the backpack strap caught on the switch. I went barrelling forward to crash into Noisebridge’s media cart and a lot of chairs. Everyone laughed. NOT GOOD. Luckily, only one thumb and my dignity were wounded. Day 3, I had my hand on the forward lever and was stopping on the sidewalk. Except I didn’t stop! I was about to hit both a curb and a knot of pedestrians and all I could do was crash myself into a pole. That worked and I yanked out the key and flipped the switch in a giant panic. So, after that I did a lot more deliberate practice with a “the switch is on” mantra. Any time I am near people, or an intersection, I go back to manual control.

I also plan to build a little shield for the switch from Sugru to prevent accidentally flipping it. It needs labelling as well; when I took my scooter on the airplane yesterday I spent some time explaining DO NOT USE THE SWITCH to the airline cargo laoders at the gate until they were so scared of my “TURBO MODE” that they gave me back the key and carried the scooter onto the plane.

Next I want to move the keyhole to a spot on top of the dashboard instead of under it, and stick some LEDs and an arduino in there with its usb port sticking out for programming, and some sort of complicated dial so I can make different things happen with blinky lights on the front of the scooter….

Followup to SF Muni bus complaint form post

July 19, 2012January 6, 2019 Liz

As a followup to my post about public transportation complaint forms: I filed a couple of complaints to test the system. It is fairly cumbersome, so though I had resolved to report everything that was a problem, I haven’t done it. I did take a few photos of buses that I ride before I get on, and took some notes so that I have the bus numbers, but that is hard to keep up consistently. I am usually focusing on getting on the bus smoothly and I’ve had my son with me a lot so I have him to think about too. This is with riding the bus 2 to 6 times a day.

I feel a little worried about reporting on drivers who are rude or can’t operate the lift well. Those drivers will still be there every day and I will have to still see them. They don’t always have their numbers showing on their uniform sleeves. I am not sure what their reaction will be when they see me photographing the bus number.

I would estimate that about half the time I have a problem getting on the bus. Most of the time that is the driver not asking people to board or exit at the back of the bus and so there is a delay in putting down the lift. That isn’t a big deal to me unless the bus is crowded, and 20 people push on in front of me, which means I have to get past them in the aisle to get to the wheelchair seating area OR that the bus driver doesn’t want to let me on. Three times in the last week bus drivers have been reluctant to let me on, giving excuses about their shift being about to end in 10 minutes, or about the bus being too full (it wasn’t). I had to argue my way on, each time. The driver in both cases tried to convince me that another bus was “right behind them” but I could see on QuickMuni, an Android app, that the next buses were 20-30 minutes away. One time, my son and I were completely passed up, at 10pm on Mission by a #49 bus going outbound.

On the complaints I filed, I got back email responses as attachments in docx format. Here is one of them:

July 19, 2012

Dear Liz Henry:

Thank you for taking the time to provide feedback regarding Muni.

Our goal is to provide timely, convenient and safe service, and your input is very important. Your complaints have been forwarded to Cyndia Chambers, Potrero Division Superintendent for investigation and resolution. We will strive to resolve your concern in an expedient manner.

If you have a follow-up question regarding your report, please contact us at 415.701.5640 and refer to Passenger Service Report # 413220, 413221.

If you would like to provide additional feedback regarding Muni services, we welcome you to provide comments seven days a week, 24 hours a day via www.sfmta.com or through the 311 Customer Service Center at 311 or 415.701.2311.

Sincerely,

Maria M. Williams
Manager, Muni Customer Services
San Francisco Municipal Transportation Agency

Passenger Service Report #: 413220, 413221 311 Service Request #: 1160424, 1160418

Then I got a paper copy of this letter snail mailed to me. Both letters are the same, but one is dated July 16 and the other July 19th. That seems like a lot of effort on their part to say nothing.
I don’t know what my complaints were. I don’t know what is being done. I don’t have any kind of report on data they collect, whether there are ongoing programs for improvement, and so on. I’ll try following up on one of the complaints to see what happens next in their procedure.

When I go back to the SF Muni 311 feedback page, and click on the link to check the status of a complaint I have already filed, I get an error screen. Try it and see! When I put in the complaint tracking number and my email address, I get yet another error from the Lagan self-service online government app. As with all the other error screens I’ve gotten to with San Francisco’s 311 system, there is nothing to tell me where to report the error.

If the entire procedure is this opaque and difficult to me, a privileged person with incredible access to computers and the net and a fair educational background and a lot of experience dealing with bureaucracies, how does this process look to The Average Citizen? And specifically, will it work at all for other disabled people in San Francisco who want to hold the system accountable, and contribute to improving public transport?

On bus lifts and complaint forms

July 5, 2012January 6, 2019 Liz

Now that I am using a mobility scooter and can’t drive, I ride a MUNI bus about 4 times a day in San Francisco. Most of the time I get on the bus and everything’s fine. A non-trivial amount of hte time, there is some hitch to accessible MUNI travel and either I cope with that gracefully or I get quite angry.

Most of the time in the last few months I get too discombobulated to document the incident. But I’m resolving to do so consistently from now on not for my own desire to vent but as a political act that might benefit many people and might help us act together to improve things.

When I talk about, or twitter or blog about access difficulties on the bus, people tell me “well you should report it”. I found that reporting it is quite complicated. Also, while dealing with mobility issues and a lot of pain and all the demands of my daily life, even on medical leave from work, it’s been daunting to consider this.

I would like to describe some of the aspects of MUNI transit with a wheelchair and to take a good look at the process of making an official complaint. The complaint process is fairly clunky and off-putting. I’m thinking about how to improve that process and make it productive and useful. Meanwhile, I’ll make a policy for myself of not only going through the formal complaint process, but also twittering the bus number and situation. For my own data tracking, I will take a photo of each bus I ride, with the bus number, uploading it to Flickr. I’ll then take notes on access in a paper notebook. For each Flickr photo I will type up my access notes, and tag the photo with #accessMUNI, the bus number, approximate time of day, details of the experience, and #fail or #win. That will give me some data to work with personally.

I wonder how many lifts break on MUNI in a day, in a month? How many complaints about bus access are there? Is that or should it be public information? Could I build a work-around, an end run, basically an alternate complaint system that has intake from paper forms (mailed to me personally), text messages, and a phone app? Or a simpler web form for complaints?

Here is how a smooth bus-boarding goes:

* The driver sees me and immediately tells the apparently able bodied people on the bus and the people waiting for the bus to use the back doors. The driver extends the lift.
* I get on the lift and it brings me up onto the bus
* The driver or other passengers flip up some seats to make room for me and the chair
* I settle in and we’re good to go (meanwhile, everyone else has gotten on or off.)

Keep in mind the wheelchair seating areas, two on most buses, are midway back in the bus, so to get on or off, I have to go past three to 5 inward-facing seats which might be full of people, some of them with shopping carts, strollers, walkers, and suitcases.

In a bad situation, here is what can happen:

* The driver does not know how to operate the lift.
* The driver tries to extend the lift, but it doesn’t work.
* The driver claims the lift is broken.
* The driver says the bus is too crowded and won’t let me on.
* The driver lets all the other people get on the bus through the front door, filling up the seats, then extends the ramp, but now the bus is so full it is very hard to get to the wheelchair seating. People have to get up or move or stand on the seats to let me pass. The people on the bus sometimes get angry and impatient at the fuss and delay.
* The driver does not stop for me at all.
* There are already two wheelchairs on the bus, so the driver won’t let me on.
* Driver has not pulled up to the curb in a place where I can get on or off, and then has to reposition the bus to extend the lift.
* The lift breaks in such a way that the bus can’t move because the doors won’t close.
* I get on the bus but the lift won’t work again to let me off.
* The lockdown clamps either don’t work at all, or lock in a wheelchair’s wheels and won’t release. (I don’t use the locks anymore so I won’t go into this.)
* There is no button for me to push to indicate I want to get off the bus and need the lift, so I have to shout to the driver or get other passengers to let the driver know. (This doesn’t always work: I can miss the stop, or it can mean the driver yells at me.)
* Many other bugs in the system that I haven’t thought to list.

As a more minor complaint I have noticed that all drivers get me to come onto the lift, then lock the front flap upwards so I can’t get off again. Then the driver will sometimes get up to clear passengers from the wheelchair seating area and flip up the seats to make room. In that situation I am sometimes sitting in the rain waiting. I always wonder why the driver doesn’t move the lift to bring me onto the bus, and out of the cold and rain, first? Don’t they think? But, whatever, at least I’m on the bus eventually.

Another detail that would improve courtesy is that when the drivers (correctly) ask people waiting to get on or off to use the back door, and they begin to extend the lift, they almost always overlook obviously elderly and disabled people using canes or simply very frail. It would be much more in keeping with the spirit of things if the driver would encourage these folks to get on the bus through the front door, then deal with the lift and wheelchairs. I often tell the driver, “I’m sitting down — that lady isn’t! Does she need the bus to kneel, first?” But it usually doesn’t work and the driver continues yelling in some elderly person’s face for them to “use the back door”.

I wonder about the training the drivers go through. Most of them can competently operate a lift and are resigned to helping get wheelchair users on and off the bus. A very few are kind and treat disabled people with human decency as a matter of course. I see them deal with difficult people and situations gracefully. It might improve things in general if the drivers had some basic consciousness raising about people with disabilities. Drivers may assume a wheelchair user is paralyzed (they often assume this for me, yet I can walk ) They shout, or condescend, or pat me, or bring in a lot of assumptions to our interaction, and then I see them repeat that pattern with other disabled people who get on the bus. You can’t make people be nice and I don’t need my ass kissed because I’m disabled, but maybe some of that bad attitude feeds into the access problems that I see happen, especially with drivers who regard us as an inconvenience and want to use any excuse to pass us up and who seem to want to make us feel it.

When a lift is broken and a bus passes me up, I always wonder what happens. Does that driver just continue on for the rest of the shift, passing up an unknown number of people who needed a lift? Do they report the broken lift right away? What happens?

Here is a #49 bus, number 8195, that passed me up yesterday at Van Ness and 26th, claiming a broken lift:

So, moving onward to the complaint process and the forms online. Basically this is the bug reporting system. San Francisco uses the 311 system. Here is the 311 page that leads to the complaint form. People with compliments or complaints can use the web forms, or can call 311 or a full phone number to give feedback. There is a link to an accessible form, but it isn’t really an accessible form, it’s instructions to call the 311 number if you can’t use the web form.

Here is screen one of the complaint form. It asks for an email address and a repeated email address confirmation. You have the option to skip this step.

Then I get a screen that either adds my address to the 311 database, or tells me it’s already in there. It tells me to call 911 in a real emergency and gives me a disclaimer about privacy. There are Back and Next buttons.

Screen 3 is a beauty. It’s 26 fields, 8 of them required.

Here are their fields. Required fields are marked with an asterisk. Just for fun, I bold faced the options that I need to complain about most often.

1. First Name
2. Last Name
3. Primary phone
4. Alternate phone
5. *Email address (never remembered from one session to the next; no login possible)
6. Address
7. City
8. State
9. Zip code
*10. Request category — a dropdown menu with these options:
a. Conduct – Discourteous/Insensitive/Inappropriate Conduct
b. Conduct – Inattentiveness/Negligence
c. Conduct – Unsafe Operation
d. Services – Criminal Activity
e. Services – Service Delivery / Facilities
f. Services – Service Planning
g. Services – Miscellaneous

11. *Request type. This dropdown changes depending on which Request Category was selected in field 10.
a1: 301 Discourtesy to Customer
a2: 302 Altercation: Employee/Customer
a3: 303 Fare/Transfer/POP Dispute
a4: 304 Mishandling Funds/Transfers
a5: Refused Vehicle as Terminal Shelter
a6: General Unprofessional Conduct/Appearance

b1: 201 Pass Up/Did Not Wait for Transferee
b2: 202 Ignored Stop Request
b3: 203 No EN Route Announcements
b4: 204 Inadequate/No Delay Announcements
b5: 205 Offroute/Did Not Complete Route
b6: 206 Not Adhering to Schedule
b7: 207 Refused to Kneel Bus/Lower Steps
b8: 208 Did Not Ask Priority Seats to be Vacated
b9: 209 Did Not Pull to Curb
b10: 210 Refused to Accomodate Service Animal
b11: 211 Unauthorized Stop/Delay
b12: 212 Did not Enforce Rules/Contact Authorities
b13: 213 General Distraction from Duty

c1: 101 Running Red Light/Stop Sign
c2: 102 Speeding
c3: 103 Allegedly Under Influence of Drugs/Alcohol
c4: 104 Using Mobile Phone or Radio
c5: 105 Eating/Drinking/Smoking
c6: 106 Collision
c7: 107 Fall Boarding/On Board Alighting – Injury
c8: 108 General Careless Operation

d1: 501 Altercation: Miscellaneous
d2: 502 Larceny/Theft
d3: 503 Fare Evasion/Transfer Abuse
d4: 504 Disorderly Conduct/Disturbance

e1: 601 Delay/No-Show
e2: 602 Bunching
e3: 603 Switchback
e4: 604 Vehicle Appearance
e5: 605 Vehicle Maintenance/Noise
e6: 606 Lift/Bike Rack/Securements Defective
e7: 607 Track/ATCS Maintenance
e8: 608 Station/Stop Appearance/Maintenance
e9: 609 Elevator/Escalator Maintenance
e10: 610 Fare Collection Equipment
e11: 611 Signs, Maps, and Auto-Announcements

f1: 701 Insufficient Frequency
f2: 702 Lines/Routes: Current and Proposed
f3: 703 Stop Changes
f4: 704 Shelter Requests

g1: 801 NextMuni/Technology
g2: 802 Advertising/Marketing
g3: 803 Personal Property Damage
g4: 804 Fare Media Issues
g5: Muni Rules and Regulations

12: Expected Response Time (7 days)
13: checkbox for Disclaimer
14: * Vehicle number
15: Employee ID
16: Employee physical description
17: * Line/Route (Dropdown of all the routes)
18, 19, 20: Date, Time, am/pm
21: Location
22: * Cross Street
23: * Details
24: Do you want a response letter?
25: Was this an ADA violation?
26: If it was an ADA violation, do you want a hearing?
(If “Yes” is selected, and the operator is identified, a telephone or in-person hearing will be scheduled to address the issue)

Sometimes the form returns an error message!

When it works, I get a confirmation screen with an option to go back or to confirm the info.

After confirmation I get an issue tracking number, and if I’ve given my email, an email with all the information I submitted plus the tracking number. So, if a person goes through all these screens successfully, the tracking system seems pretty decent.

My main criticism of the form is that it requires the user to decide on a taxonomy for their complaint. The complaint must fit into one of the dropdown menu options, but the possible options are shown only after the user decides what category it should be in. The complaintant should see all the options and should have a clear “miscellaneous/not included in these options” possibility from the start. THey shouldn’t have to put the complaint into a category at all. The computer can assign a category for it based on the user’s choice from a single dropdown. Uncategorizable complaints, or complaints from people not patient enough to read through the dropdown options, should be accepted too, because they are potentially useful data points. I don’t care if someone just wants to say “Fuck You MUNI” — that is not super constructive, and yet it still gives useful information in that someone was dissatisfied.

The MUNI complaint form appears to be designed with an official bus inspector in mind as the “complaintant”.

I have never seen a bus driver put the restraint system on for a wheelchair user, by the way, though some drivers have tried to get me to lock myself in with the wheel clamps. I’ve actually only seen one guy in a cheap E&J chair with no working brakes use the wheel clamps and never seen *anyone* use the belt system. It is unrealistic and not very workable. I’m sure someone out there uses it and likes it, though.

The “compliment” form is much simpler than the complaint form.

I can picture many other ways to collect this data. Maybe by building a system to take simplified complaints by text message from a feature phone (like Krys Freeman’s Bettastop prototype), or from a phone call. Paper complaints should also be possible, maybe by postcard. Complaints should be collected to figure out where problems may be clustering.

There could be a variety of useful smartphone apps as well. Though how many other disabled people on the bus do I ever seen with an iPhone? Take a wild guess. None! (That number will grow as GenX ages.) Accessibility problems should be reported via smartphone by able bodied people routinely, rather than that issue being left to the people with the least energy and resources.

It is hard to know what details you will need in making a complaint. Bus number, time of day, route number, location of the issue are the main details. I could make preprinted notepad forms and distribute them to other people on the bus, asking them to collect data.

I could see what my experimental data collection on Flickr leads to and if I can get anyone else to do the same and use the same hashtags.

And I could certainly go to one of the MUNI accessibility committee meetings to see what they talk about. Mainly at this point I’d like to know what happens with the data collected and how I can obtain it. Do particular lines have more wheelchair users, or more lift breakdowns? Particular times of day? What could be done about that?

Ideally, lift breakage or other issues would be reported in as close to realtime as possible, and hooked into a great open source system like QuickMuni? What about an app that knows what bus I’m on already, and for which I can just hit a few buttons to give simple feedback?

The thing that pisses me off most of all is trying to ride the bus during a busy time. Drivers then sometimes let 20 other people get on the bus first through the front doors. Good drivers tell everyone to board from the back door, and lower the lift immediately. Bad drivers delay everyone if they let the able bodied people go in the front, then don’t get them to move back, and then the driver refuses to let me on the bus. Leaving me in the dust is just the logical, reasonable thing to do in those driver’s minds. I had one driver on the 24 line yell at me for not *thanking him* for explaining why he wouldn’t let me on the bus. You can imagine my incandescent rage as I am deemed inconvenient and it is as if I have no right to take up space, while every other person, their shopping bags, strollers, and so on are given as much convenience as they could wish. It is for those moments that I’m going to take a photo of every bus I attempt to board, even before there is a problem.

Voyage to the End of the Block

February 8, 2012 Liz

Today I read Isabella Bird’s Unbeaten Tracks in Japan (1880), read a lot on Wikipedia and elsewhere about the Ainu and their history, and got about halfway through Finding Fernanda which I read about on Racialicious. It’s awesome investigative journalism, a good expose of the politics of international adoption and child trafficking.

In the morning I tried out the scooter. The battery heated up while charging to scary-hot and didn’t charge fully. I took the scooter for a spin anyway.

At the end of the block I came back up the hill feeling very doubtful that the battery was going to behave itself. Sadly I was correct as the scooter didn’t have the power to get me up the slope of a driveway that cut across the sidewalk much less the rest of the way up hill. I texted a couple of people and then realized there was still a charge but the steepness of the hill lowered the battery gauge to 0. So I serpentined my way up. About 4 houses away (at the steepest bit of the hill) Danny came out to rescue me and started laughing. “Are you TACKING?”

So I will try a new battery tomorrow. I called 6 wheelchair and medical supply stores and they didn’t stock this kind of battery. They all special order it and it takes 3 or 4 weeks. Weeks!!! Then I called someplace called Battery Plus, which had it and for much cheaper than the wheelchair stores. I hope it works. I’m counting on it to get around! But if it doesn’t I’ll find a more powerful powerchair.

After a rest and icing my ankles I tried going down the hill in my manual chair. It wasn’t too hard with gloves on to help me brake. So, that’s fabulous! That means I can get on the #24 bus. I hopped on and was on my way to physical therapy in the Castro.

On the bus I watched a very very old lady with a quad cane and a funny hat getting on the bus using the lift and walking with extreme difficulty. Obviously a regular. There was some fuss and rearranging as the driver made some people get up for her. Another very old lady said hello to her very happily. I eavesdropped on their conversation about shopping and then the lady with the cane said, “Now that I can go out of the house again I only go as far as 18th because I’m just afraid of getting tangle up with that Occupy stuff. Don’t get me wrong, I agree with them 100% but I’m scared I’ll get caught in one of those crowds.” They agreed about liking Occupy but being scared. That was so sad….

Then it was my stop. I realized I had backed my chair into the claw thing that grabs and locks your chair down to the floor. I usually try to avoid those and just hang on tight. The lever was stuck and would not release my chair. This snowballed embarrassingly until 2 people plus the driver plus some sort of transit cop were trying to tug my chair free and not listening to my protests that they were going to pop the tire right off the rim. Finally I stood up (mostly because people’s armpits and crotches were in my face, very annoying, and i was being jostled way too much) There was a collective gasp from half the bus. SHE CAN WALK!!!!! The driver turned around and went “Girl, what are you doing standing up! Sit back down!” “Look… that’s what the boots are for, standing up!” The chair was freed, I thanked them all and then got out of there as fast as possible feeling angry and embarrassed.

Then it was very lovely to be in the parklet in the sun at Market and Castro. I had a cookie and wrote in my notebook and looked at people. I wonder if people still say “basket days” about days like this when it’s amazingly warm and everyone’s in tight shorts? NOT EVERYONE THOUGH since there was a completely naked dude wandering around all leathery and hippietastic, holding a sort of wizard staff walking stick. Okay then!

Physical therapy was reassuringly fine and was half massage, my favorite kind, not like the boot camp kind of PT. I took a taxi home. End of story! At least I mentioned books a little in the beginning of the post.

Here is how I watch livestreams and twitter events as they are happening, btw:

And in other news, this article ticked me off because of the framing: Activists and Anarchists Speak For Themselves at Occupy Oakland. The title says it. It is activists and anarchists speaking for themselves. Yet claiming to be speaking for “voiceless” people in an “empty” city and a battlezone, a riot, a war zone. I am deeply suspicious of framing events and places and histories in this way. It in fact goes with occupying to describe a place as empty and its (non)inhabitants as voiceless (a clear Denial of Agency attack) and thus making that place suitable for a battleground. This audio clip from an activist named Soul is more like it. Work with the people doing effective work rather than writing stuff about how great it is to have a battle with riot cops.

Ankle-bustin' in the wild west

February 7, 2012 Liz

A little bit more about ankles before I move on and talk about all the books I’ve been reading!

After a couple of weird and frustrating visits with a new doctor I switched doctors again and hit the jackpot, with a kind, earnest, detective-like internal medicine dude who sent me off to the UCSF Orthopedic and Rheumatology clinics and then saw me afterwards to mull things over. The upshot of that is I have tendinitis in both Achilles tendons, some messed up other ankle tendons plus bursitis on both sides. My theory (and everyone seems to agree) is that I got too enthusiastic about walking and stair climbing and was treating pain as something to make me pause slightly and then “push through” so as not to be lazy or malingering. Tendons don’t play that way… They would like three to five months of ridiculous attention in order to recover. This is depressing though it is nice to hear the word “recover”. It means I can’t really go home to my boat. I am homesick and sad. I miss driving. It is daunting to get around in my wheelchair while in this much pain (and with giant boots on). I am on leave from work and I don’t have energy to do anything much.

I now have some clever heel wedge things that peel off in layers, big old space boot thingies to walk in, some lighter and comfier night braces for being in bed, lovely velcro ice packs that go around my ankles, and NSAID topical gel (voltaren) since I can’t tolerate regular NSAIDs. I was begging for prednisone but it looks like prednisone is exactly wrong and makes your Achilles tendons rupture. I do have some emergency Vicodin and now this Cymbalta stuff which seems promising but which is putting me through side effects… dizziness, nausea, jaw-clenching, and all that (but it did help me immediately not to feel so upset).

In Phase One of my conquest of space, we calm everything down, singing gentle lullabies to my ankles, avoid walking (while magically somehow achieving aerobic exercise) and wear these boot things with the wedges in them. I sit around distracting myself from pain and side-effects. Three or four times a day, I Voltaren up my ankles, do some PT exercises, wear the ice packs, and then it’s back into the boots. Through the magic of Amazon I got a shower bench (there is no bathtub.) At first I had a kitchen chair in there and then faced up to the reality that I needed a real bench with good stability and rubber feet and all the works. (Plus we only have 2 kitchen chairs and there are 2-4 of us in the apartment.) I get up and make my coffee or Danny makes it for me. Then I switch between reading books, reading stuff on the net, and doing my exercises and ice. At around 3pm, if it’s sunny out, the sun hits the sidewalk in front of the house, so I go outside to sit in a lawn chair (classily, on the sidewalk in my pajamas).

I went scouting to the local indoor pool and had a nice swim at the Disabled Water Exercise hour with a lot of fabulous women in bathing caps and some very friendly lifeguards who DJed for us and took requests. I used a lift to get in and out of the pool for the first time in my life. A confession here. I am not really able enough to push myself around in the manual chair to get there and back on 2 buses. The ramp up to the pool building just about does me in as my right hand and arm don’t cooperate and hurt a lot. But I can just barely do it. As of today (thanks to my fabulous boss at BlogHer and his wife’s late dad’s scooter which has been in the garage for a year) I have a little Zipr 3 travel scooter with a 12 Ah 24 V battery so I am hoping that will hold enough charge to get me to the pool (on the bus) and back. (I think I have to buy it new batteries tomorrow.) Otherwise it is around $30 in taxis plus $7 to get into the pool. I would prefer the bus at least one way since it’s cheaper and more fun. The pool was cold… I haven’t gone again yet because it’s been cold and rainy. I went to a day spa instead and saunaed myself for 3 hours.

I should also mention I started this trip with one ankle bandage brace that was moldering under the bathroom sink. Then got a second one. I felt that maybe people would see my ankle brace usage as some sort of Hysteria. Then I realized that part of why it hurt when I tried to leave the house was because my shoes touching my ankles hurt like fury. Then I got out the giant space boot that I used last July when my left ankle went all strange. The space boot was AWESOME. Then I mail-ordered a second boot from Amazon ($50, when the first one from the orthotics clinic cost me like $200…) The boots were slightly different from each other. So by the time I showed up at the orthopedist I had these embarrassingly unprescribed boots on. (No one minded or threw me out of the clinic for self-medicating myself with space boots.) I got the awesome Night Boots from their orthotics people, and the heel wedges to put in them. Over the last couple of weeks I realized I could do with a smaller size of matching walking boots. So I ordered them and a 2nd set of heel wedges so that I don’t have to switch the wedges from night to walking boots every time I switch which is like 10 times a day. Amazon Prime is very, very, useful if you are disabled, as is cold hard cash to buy things off it with.

In Phase Two about a month from now assuming my tendons have achieved a calm and stable orbit and the rest of me has not completely atrophied, I will progress to Strengthening which sounds difficult and scary. I resolve to swim Every Day Possible until I am amazingly healthy. I will pretend to be a polar bear. Physical therapy will happen three times a week instead of once. I will do amazing things with Thera-bands.

I think there is a Phase Three where I reach Mars but I’ve forgotten what happens then.

The pain has gone from being intolerable and maddening, to being just all-over stabby and achy ankle pain, to several separate kinds of pain behaving differently in different bits of my ankle depending on what I’m doing. I assume that means it is getting better!!! The sciatica-nerve pain I live with a lot of the time anyway. It’s very familiar. Also, numb/buzzing in both feet (and hands) aka peripheral neuropathy. The sharp splintery scary pain like million icicles is the Achilles tendons. The dull horrible pain at the base of my heels is the bursitis which makes it hurt to stand up at all (boots or no boots). The wobbly wrongnesses on either side of my right ankle are the posterial tibial tendons and, um, some other ones on the outside. That is the bit that makes me afraid to stand up in the shower. It’s important to get to know what’s going on with pain and what it means. If you’ve been in a lot of pain it’s still a surprise when it comes back or when you find out there are whole new kinds of pain and places to hurt. But once I can break it down into different things, I feel a little more in control of things (even if I’m not). It is getting to name it and knowing what it is, partly.

While it is scary and annoying and depressing to be dealing with this I have to say it is as good as it could be. I have tons of support, I have short term state disability while I’m not working, a warm and cozy place to live, and my partner and our kids are just great. I don’t feel like the most stellar parent (as usual while in lots of pain) but we get by. My parents also helped me out so that I can do things like do my errands with TaskRabbit, take taxis around instead of going through paratransit (though I am going to sign up for it anyway) and order books and space boots and Thera-bands galore off Amazon. I have a zillion beautiful friends who talk with me on IM and IRC throughout the day and night, recommend books for me, and say “there there” in comments when I complain and cry all over my not-very-secret-secret diaries. So I’m very grateful for all that and am also glad I have decent medical care and advice. I look forward hugely to scootering once I get a new battery for this little scooter beast.

I miss my boat, being on the boat with my son, seeing him during the week and helping with his homework, all our boat neighbors, the birds outside my window, the water and light in the harbor, the tide, kayaking, my bike, walking casually into stores and looking at things, grocery shopping at Chavez Market in Deadwood City, the nice people at the wash and fold laundrette next to Chavez, watching my son’s rehearsals at his hip hop dance studio and all the people there, picking him up from school, the library, driving alone with loud music on, randomly deciding to drive down interesting looking streets or going a new place on the map just to see what’s there, all my stuff and books and clothes, housecleaning (weird, i know…), bustling around a lot, doing Projects, my cooking stuff especially my toaster oven, and being able to drive people places and do them favors.

I have been to Noisebridge twice this month (and printed things on the 3D printer, finally!), went to lunch and the fabulous day spa with yarnivore and yatima, and another time with queershoulder; to physical therapy; and to half a day of She’s Geeky where I ran a discussion that was basically “What Would Black Hat Feminist Hackers Do?”. I also went to a cafe with my sister and to another cafe with my friend hazelbroom. That isn’t too bad for outings. I go kind of stir crazy in here staring out the window and at my screen and feel that life sucks if i have to be in bed for days and days and days. So any time I get to go out (even to the doctor) the world looks especially shiny and I love everyone and I come back all charged up with extrovert energy.

I’m about to go to London by the way because, fuck, free trip to London, I am dying to go to (and speak at) this conference, and I’ll be damned if my ankles not working is going to stop me. (See below for photo with airport gate tags hanging off my wheelchair.) I will have to spend a lot of time in bed in the hotel, but it’s a nice hotel, it’s accessible, there is room service and internet, and it’s near a lot of cafes and bookstores and the British Museum and the Central London YMCA, which I will pay 50 pounds to join for a week so I can swim. The bad part will be the plane ride but I have pain meds for that and will also bring my ice packs. I think the flight attendants might refreeze them for me if I ask nicely.

The sauna place deserves particular mention in being a bright spot in my month. It is fairly accessible, with a lift to get up a couple of entrance steps (they leave the key in it!) and no stairs anywhere else. In the entry hall, there is an accessible bathroom. There’s a smaller toilet once you’re in the locker rooms which would not be accessible to most wheelchairs (though I managed). I did okay with my manual chair in the bath house area which is a big open room with benches and showers (seated showers), wet sauna and dry sauna rooms, and a cold and a hot pool which are on a raised area i.e. not as accessible. I got into the hot pool by hitching myself up the side of it, hanging onto a pillar, and then sliding in like a seal. If you need help transferring then there is probably no way. There is tea and ice water and lemons and little cups of salt to scrub yourself with, which if you are foolish like me you think is an unusually un-hippie-ish nice touch of providing sugar to make lemonade with. No! it is not sugar. Perish the thought. Do not attempt to sugar your herb tea (like I did!). The other funny thing about this spa is that it is hipstertastically solemn and full of fake Zen. So there are buddha statues and lotus flower things all over and there is a gong you can bang on if people are having a good gossip or giggling in a way that perturbs your Meditative experience. I wish they had Loud Hour because I would far prefer, when naked in a sauna scrubbing myself with a slice of lemon and some salt, to be surrounded by gossiping laughing women rather than solemn culturally-appropriating church ladies with a lot of tattoos. While reclining in an Adirondack chair panting from the hot tub and sipping my iced lemon-cucumber water I was idly looking around and saw in the locker room window a strange paper cutout decoration that … that looked exactly like Jokey Smurf holding a present. Then the universe shifted and I realized it was the lotus flower logo of the day spa. I started laughing as I shifted the lotus flower to Jokey Smurf and back again and imagined the sort of sauna that would have an exploding terrorist smurf as its logo. I couldn’t TELL my friend my thought since we would be GONGED so I hitched myself into my chair, went back to the locker room, got my notebook, and settled back down in the lounging chair to write down all my silly observations for posterity.

Travelling wheels, and whoever invented the ankle was a jerk

January 11, 2012 Liz

Someone just tagged this very nice photo of me dressed to kill! It’s from linux.conf.au in 2010 in Wellington. Now that was a fantastic conference! I had such a great time with the Haecksen and at DrupalSouth. I gave three talks, “Code of Our Own“, “Hack Ability: Open Source Assistive Tech“, and one about Drupal consulting; went to some other great talks; did some fun hacking around; messed with Arduinos; went to a GirlGeek dinner; did touristy things (greatly facilitated by Daniel and Kelly driving me around half of the island, one of the nicest things ever); and met a ton of fantastic people. (Thank you Google “diversity” money, LCA, and DrupalSouth for helping me get there with some cold hard cash!)

I note that when you’re using a wheelchair and dressing up it is important to either wear pants that are about 3 inches longer than you’d wear walking, OR make sure to have on really good socks.

These stripey purple socks cheered me greatly! I have matching armwarmers, but that’s kind of overkill.

It was nice to wake up to see this reminder that I am a tough-assed world traveler.

That’s part of why I leave the dozens and dozens of airplane gate tags remnants on my wheelchair frame. Sometimes it bolsters me up to look down at at them and think, “I’ve been a lot of places with this chair.”

After months of doing very well and gradual improvement in walking, to the point where in December I was boldly walking around barely using a cane “just in case” and practically STRIDING, going up stairs just for fun and to “feed” my little FitBit friend, well, something went wrong in my ankles. I don’t really know what (yet if ever) but it began to hurt like hell. I took it easy every couple of days, but then it went *really* wrong, and I could not bend my ankles very well. That’s never happened to me before! A whole new kind of pain and limping! Right when I was cautiously thinking about my future years of “invisible disability” and the new challenges that would bring…

If your ankles don’t work, you can only shuffle very cautiously. Going up or down even a small step means turning sideways to take the step, while holding onto something for dear life. So, I’ve been in bed for two weeks, with my feet up on ice packs and heating pads. It is hard to take a shower. I can’t drive, because my foot can’t work the gas and brake pedals. For going to the doctor (or my one outing this week, to a cafe, driven by a friend) I am back in the wheelchair. I’m taking taxis for doctor visits and using TaskRabbit rather heavily while my partner is out of town.

Now while I talk big about everything I have to say it was just plain convenient and nice to be able to walk so well. I am in pain and sad and upset. Actually I’d notch that up to “freaked the hell out and terrified of losing my independence.” So it’s nice to see this photo of myself from 2 years ago, happy and smiling, looking sharp, ranging (alone) so far from home. I do love my wheels!

And next year I swear I’m going to KiwiCon. . .