Voyage to the End of the Block

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.

Voyage of Exploration to the End of the Block

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:

big monitor setup

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

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.

night boots

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).

velcro ice pack wraps

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.

walking boots

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.

ankle rehab junk

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

Someone just tagged this very nice photo of me dressed to kill! It’s from 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. . .

Will you need a photo ID to vote in 2012?

The Brennan Center just published a huge report, Voting Law Changes in 2012. The description of the report says that these laws will affect disabled people as well as young, minority, and low-income voters. Here is the lowdown on how these laws may affect people with disabilities.

Disability and Voting equals Power button

Seven states have changed the law on voter registration and on absentee ballots to require government-issued photo ID. If you’re disabled, and you don’t have a current state or federal government issued photo ID, you may need to do quite a lot of planning to get one. Transportation, and the process itself of waiting in lines and going to various offices may be a barrier for many people.

If you have an elderly relative whose ID may be expired or who may not have a photo ID, and you’re in one of these states, you might want to help them prepare to vote. Let them know the law has changed and ask them to check their ID expiration dates now!

Unexpired driver’s license, non-driver’s ID issued by a motor vehicle department, U.S. passport, or U.S. military photo ID will be accepted by all seven states: Alabama, Kansas, Rhode Island, South Carolina, Tennessee, Texas, and Wisconsin.

Student IDs: Alabama, Kansas, and Rhode Island.

U.S. naturalization documents bearing a photo: Alabama, Rhode Island, Tennessee, Texas, and Wisconsin.
Tribal ID card with a photo: Alabama and Wisconsin.
Concealed handgun licenses: Kansas and Texas. (Okay….)
Any old ID with your name and photo on it: Rhode Island. Woo hoo, print your own!

Here’s an excerpt from the Voting Law Changes in 2012 report that describes the situation in detail:

In general, the photo ID bills that were introduced this session are more restrictive than those in prior sessions, including fewer forms of acceptable IDs, fewer exemptions, or fewer alternative mechanisms for eligible voters without the specified IDs to vote.

Those laws that have passed this session vary in several respects, including: (1) the types of photo ID that voters are permitted to show for voting; (2) whether the requirement to provide ID applies only to in-person voters or to those who vote by mail as well; (3) whether there are any exemptions from the requirement to provide ID; and, most importantly, (4) whether there is an alternative way for a voter who does not have an accepted form of photo ID to cast a ballot that counts. Detailed descriptions of each bill are included in the appendix to this report.

The types of ID permitted
With the exception of Rhode Island, each of the states that passed voter ID bills require voters to show government-issued photo IDs, though the list of acceptable IDs differs from state to state. All seven states accept an unexpired driver’s license, non-driver’s ID issued by a motor vehicle department, U.S. passport, or U.S. military photo ID. All states except for Kansas and South Carolina also accept U.S. naturalization documents bearing a photo. Alabama, Rhode Island, and Tennessee broadly accept any photo ID issued by state and federal governments, though Tennessee expressly excludes student IDs from consideration. Only Alabama, Kansas, and Rhode Island accept student photo IDs issued by state institutions of higher education. Wisconsin purports to accept certain state-issued student IDs, but the state’s new law imposes criteria for such IDs that few if any state schools’ IDs meet. Kansas and Texas expressly allow concealed handgun licenses, and Alabama, Rhode Island and Tennessee accept such IDs as well. Only Alabama and Wisconsin accept a tribal ID card with a photo. Rhode Island is the only state that accepts non-governmental photo IDs for voting; indeed, any current ID with a voter’s name and photograph suffices.

Who must show photo ID

All seven states require individuals appearing to vote in person at a polling place to show photo ID. Only Alabama and Kansas require all persons who vote absentee to submit a copy of their photo IDs with their mail-in ballots. Those states are now the first two states in the nation ever to require photo ID with absentee ballots. Wisconsin requires permanent absentee voters to submit a copy of their photo IDs, but only the first time they vote absentee. As a practical matter, all absentee voters in Wisconsin will have to provide a copy of their photo IDs when the law first goes into full effect in 2012.


Several states exclude certain categories of voters from the requirement to show photo ID for voting. Alabama exempts individuals who are entitled to vote absentee under federal laws protecting certain military and overseas voters and certain elderly and disabled voters. Wisconsin also exempts military and overseas voters, as well as voters designated as “confidential,” such as police officers or domestic violence victims. It does not exempt elderly or disabled voters other than those indefinitely confined to certain care facilities. Tennessee exempts voters who are either hospitalized or in nursing homes. Texas exempts certain voters with disabilities who can produce a statement that they have been determined to be disabled by specified government agencies and do not have the required ID. And Kansas exempts only permanently disabled and absent military voters from its law, but allows persons over sixty-five to show expired photo IDs.

I’m not in any of those states but thought I’d help get the word out.

If you’re in California, take a look at Disability Rights California’s page on Voting Rights, it’s very good and has a ton of links to information in Spanish, English, Cambodian, Hmong, Chinese, Tagalog, Laotian, and Vietnamese on voting while disabled.

Thanks to Dan Gillmor for the link to the Brennan Center report.