disability – Page 8

Taxis who refuse wheelchairs

June 23, 2014 Liz

I enjoy coming to Portland and taking the awesomely accessible train from PDX airport to downtown, but I got in a little late for my conference dinner, so, figuring it would save time, I headed to the taxi dispatch line to get a cab. I was traveling by myself, with my manual Quickie Ti wheelchair and a backpack.

The taxis were about halfway up to the first taxi position, and the dispatcher motioned for me to get into the first one in line, a Union Cab. The driver shook his head at her, then at me as I asked him to open the trunk of the taxi. “I just need you to open the trunk, the wheelchair folds up and I will put it in.” He refused to take me as a passenger. The dispatcher was angry with him, but he ignored her and pulled up a few more feet, taking another passenger who arrived at the stand after me.

The second driver in line was in a Green Cab. He had a big white bushy beard and was wearing sunglasses and a large black floppy hat. He looked right into my eyes, shook his head, and waved his hand dismissively as I asked him to open the trunk of the taxi. The dispatcher also was unable to persuade him to open his doors or trunk. That guy pulled up and let someone else and their luggage into his cab.

The third driver was outraged at what he had just seen. He got out of the taxi, and helped me put my backpack into his trunk. I took apart my chair, which has quick release wheels like some bicycles, and folded down the seat back for us both to put the pieces into the trunk of the taxi. This driver asked the dispatcher from the airport taxi stand to report the first two drivers. I said that I would write down their information and report them. I got the cab companies and numbers, but not the license plates. As we pulled out of the airport, we actually caught up with the two cabs that had refused to take me as a passenger, so I was able to double check their cab numbers.

The nice driver was from Broadway Cab. He pointed out the phone number for the City of Portland complaint line, and was very supportive and helpful. He said that to his knowledge, the first two drivers have done this in the past because they think that wheelchairs will take too much time to deal with. Talking with him was so heartening, a good reminder that there are plain old decent human beings around who will treat me like a fellow person although we are strangers.

From my conversations with other cab drivers and bus drivers, there are other assumptions that they tend to make about wheelchair users or people who have a visible disability. Drivers may be angry at me before I even get into a cab or bus, because they are afraid I will take up their time, be unable to get in or out of the cab, may somehow injure myself and sue them, or whatever. If I try to hail a cab on the street, it usually doesn’t work. I have to ask someone else, even a total stranger, to hail the cab while I hide out of sight. This is part of why services like Uber and Lyft work well for me, while I’m lucky enough to be able to afford to use them. I can leave my house with my manual wheelchair, travel, and be confident that I won’t get stranded by bigotry.

As it was, I only had wait a few minutes for a nicer cab driver, and things turned out fine. However, I do get angry about cab drivers who won’t stop for me. The prejudice that I get isn’t going to get any easier for me as I get older, so I try to take the time now, while I have the energy (and the privilege) to report discriminatory behavior.

I just reported them through the City of Portland’s online complaint form and to the cab companies. The city emailed me back immediately to apologize and to let me know they were addressing the complaints. Both Green and Union took my phone complaint and said they would investigate and likely reprimand the drivers.

Since I benefit daily from the activism of people who hard core chained themselves to buses in the dead of winter in the 70s and 80s, I figure I can spare an hour to try to make sure that current ADA law is enforced. I also think of places like New York City where activists are fighting hard to get the city to make all taxis accessible to more wheelchair users.

Tiny scooter test run

June 11, 2014 Liz

Last week I got a new tiny mobility scooter. It is 35 lbs and easily disassembles and folds. Here I am out on my birthday at Pier 39 after a ferry ride with friends!

Liz travelscoot pier39

It is a TravelScoot Junior Deluxe, ie, the version for short people or children, and with a lithium ion battery. About a third of the cost of the scooter is in this battery. The “Junior” size is pretty good for me. I’m 5 foot 3 which is at the top of the recommended height. I went with the smaller size figuring it would be easier to handle while I was folding it, and also because the Junior size has 2 inches less width than the regular model. So, in theory I can fit through doors 24″ wide, same as with my manual wheelchair.

Assembly of the scooter was easy. It took under 10 minutes. The assembly instructions were slightly different from the manual shipped with the TravelScoot Junior. There was a little supplement that showed how to position the battery upright in the back for the “Junior” version.

The battery fastens on with velcro and is easy to plug in and unplug if you have good dexterity. I am mostly doing this while sitting on the ground — or I can do it leaning over from the scooter seat. My only quibble with battery setup is that I can’t charge the battery without taking it out of its tray, because the charging port is blocked by the side of the tray.

I put a Crampbuster on the throttle so that I can control the scooter’s speed without constant gripping, which would be hard on my arthritic hands.

Comments on driving the TravelScoot Junior:

It coasts down hills. The brakes work fine. Easy to drive. Reverse works well, and is nice and fast. Acceleration is slow whether you are reversing or going forwards, but not too slow. This takes getting used to. My phone’s speedometer hovered around 4-5mph as I zoomed around. It is a little bit tricky to match paces with a walking person. To go slower than the max speed, I have to squeeze the throttle exactly right. If I let up the pressure the scooter slows down.

There is no parking brake so if I pause to mess with my phone, I need to park carefully. This is quite annoying on the bus, but I can still handle it. It means that in order to ride the bus with any ease I will need to rig up some kind of parking brake!

There is a slight tendency to “drift” or stutter sideways a little bit when going fast on a bumpy street or sidewalk. The undercarriage clearance is fantastic. I could probably hop a low curb in this. (Slowly)

I would like to customize or get a new back support as it is a little too high up and far back to support my low back, which needs it! It may be possible to just swap out the entire seat. It is a standard pole with clamp assembly, like for a bike seat.

So far I’ve put this in the back of cabs a few times. I like that I don’t have to ask a random taxi driver to help me lift a 95 lb machine into his trunk. Instead it is something I can easily lift myself.

It would be good if I made a special padded battery carrying case, like a battery messenger bag, for when I need to put this into a car. TravelScoot owner manual suggests a padded lunch bag, but the battery I have is too long/wide for a lunch cooler bag. Here is a good craft project for my hackerspace. If I make a battery carrying case I’ll post its design on my blog!

I have also successfully grocery shopped with two backpacks and a large bag. One backpack hung off the seat back, another from the handlebars (which is awkward and I don’t really recommend it) and the large heavy bag in the red canvas shopping tray below the seat. That thing is just fabric, and attached with velcro, but I can tell you it carried about 30 lbs of cat litter and cat food with no trouble at all.

This scooter makes people stare, and ask questions, much more than my usual mobility scooters or manual wheelchair. I need to carry small flyers with an FAQ.

For the FAQ:

* “Does Medicare pay for that” (People on the street want these for their older relatives.) My answer: Probably not. And I don’t really know. I have never yet been on Medicare.

* How much did that cost? (An awkward question. I answer by saying “You can get a mobility scooter from about $700-2500” That way avoiding standing around at a bus stop admitting I just dropped 2K on this beast. I did not mind so much saying that I bought my old Zipr for $700. Class guilt . . . )

* Is that electric? What the hell do you think, I make it go with the power of my mind????? Oh, people.

* How far/fast/long does it go? Several miles, all day at least, 4.5 miles an hour, charge the battery by plugging it in overnight.

* Can you put that in a car? Yes you can and it easily folds up.

* How heavy is it? 35 pounds.

* Where do you get them? (Let Me Fucking Google That For You) Oh ok. *sigh* Travelscoot.com. Someday I hope these things are just in every big drugstore, Target, Walmart, etc. Or just in bike shops and you can test drive them there!!

* Yes, it has reverse. No, it does not beep. No, I really don’t want it to beep. Do you beep when you take a step backwards? Well then.

* What if it breaks? Yes. What if. That’s the million dollar question. You better learn some things about electronics or cultivate a relationship with your local electric bike/scooter repair shop. The thing has a warranty, which I will probably be exploring at some point . . .

* Not asked but should be on the FAQ: You need to have good balance, ability to squeeze the hand brakes, and be able to transfer independently to use this. 3 wheels is not usually a good option for an elderly person as you can easily tip over.

There is room for competition for scooters like this that have a few more features but are still stripped-down, lightweight, and easy to understand for maintenance and repair!

There is a fantastic blog with Travelscoot reviews by Elizabeth Fisher that has reviews and photos by many people using their TravelScoots.

I put up some unboxing and assembly photos. Feel free to take a look at all my photos on Flickr with the travelscoot tag .

In short: this is a GREAT scooter if you have 2K lying around and you are a very nimble person who for one reason or another can’t walk very well. To drive it, you need good balance and good hand control (brake squeezing especially). It could be possible to modify a travelscoot with a custom seat to meet your particular seating needs!

Random encounters while wheeled

May 13, 2014 Liz

The other day at Hyde Park Pier I was out with the kids to look at the historic ships. It was pretty awesome. We looked at the steam engines and the huge wood shop for shipwright work, tried the block and tackle, read all the signs and sat around staring at boats coming in and out of the harbor while eating ice cream.

I had a funny random encounter. We were loafing around eating our ice cream cones. Me in my manual chair and the kids standing around right next to me. Close enough to be jostling me by bumping into my wheels. I was looking down in my lap at my phone. Some lady swooped into my field of vision, like bent over me with her face looming up between where i was holding my phone and my face. (You have to picture how sudden, awkward, and intrusive that was!) She put something on my shirt, saying “Here you go” in a syrupy voice. OK, what the fuck! I looked down and it was an admission sticker to get on the historic ships. “Uh thanks but…. Ummm….” I tried to talk with her but she walked away too quickly for any reaction to happen. With one hand full of my ice cream cone and the other on my phone, I wasn’t going to be able to chase her! She had whitish grey hair and I think sunglasses.

Ticket lady, if you read this, I’d like to ask you: Seriously, what the fuck was in your mind at that moment?!

I’m trying to imagine what was happening in her mind. I get where you might want to give away your admission pass to a park, or your bus transfer. But would you go up to a total stranger and stick it on their shirt front without any interaction?

No!

Not unless they’re a wheelchair user in which case I guess all bets are off. Kind of like petting a stray dog isn’t it!? Or like, oh hey, it’s the Hyde Park Pier crippled stranger petting zoo!!!

So also, there wasn’t like some indication that I was wistfully gazing through the railings at the park exhibit that was too expensive for me to afford with the kids (who god knows she also probably pitied incorrectly). It was just a plain old pity move full of really weird and offensive assumptions. Like a combination of class assumptions based on my being disabled, and, an assumption it is just OK to come up and lay her hands on some stranger in a wheelchair, and run off. I think in her mind it was an act of beautiful charity. It probably made her day. But it filled me with rage and I couldn’t do anything about it.

I couldn’t bring myself to mention it to the kids as I didn’t want to spoil the mood of our nice day.

If she had just said “Oh hello would you all like a free pass”, that would have been fine but I would likely not have taken it.

I was pleased to find one of the ships had a ramp and was mostly accessible. No one was checking tickets, since it was the end of the day.

On our way out of the park I told the rangers how nice it was to find an unexpected ramp and get to go onto a ship. They told me to come back another day to the ticket booth and I could get a lifetime discount park pass good for the state and national parks (I think) which you can get if you’re disabled or blind. That was helpful (and nice).

That kind of park pass I will happily take, though I’m also happy to support the park system by just paying admission. Since usually I can’t get around parks and exhibits very well, and making them accessible probably will never happen, the discount or a free pass seems fair !

Another random encounter that came out better than expected. I was greeted by someone who works in a local store I often go to. She apologized for asking and then asked why I have a wheelchair. I swallowed my stock of snippy answers and explained my medical history in front of my child while we hung out outside some bar on Mission and I was covered in grocery bags. *eyeroll* She was asking because her hands and feet go numb and she is worried and wonders what things will be like if she ever needs a wheelchair and how she can tell; her doctor told her probably it is because she uses bleach when she scrubs and cleans. I opined that was bogus and the good thing about doctors is you can go to another one and get a second opinion. It is sometimes easier to forgive the questions inspired by fear and personal motivations when it is truly personal.

But I’m so tired of being a rolling public diplomacy and information booth. I then had to explain to my son that, as he may be aware, I don’t normally explain my medical issues to strangers on the street but in this case I made an exception and felt that she could use a friendly word.

The other people asking me lots of questions lately are cab drivers. Because my smaller size scooters have been broken and the big one I use to get around the neighborhood is too big for the bus, I’ve been taking cabs. Drivers are universally astonished that I have a job, that I’m out by myself, etc. (Even though obviously they drive by people in wheelchairs all the time who are “out by themselves” – invisible ones????). Sometimes they want to know about the folding scooter because they have an older relative.

Welp, it’s complicated. I think the buildup from being patient with most people comes out in wanting to punch Sticker Lady right in the snout though it would have been a waste of good ice cream . . .

Perhaps this rant about minor annoyances will educate a random stranger on the internet and thus save some other person on wheels some hassle!

Back in the saddle!

February 28, 2014 Liz

The last few months have been rough but I’m feeling much better and am back at work. Today, I appreciated that even though it was cold and raining, I was able to do all this:

* have coffee in the morning
* eat some toast
* work and feel like my brain was back online
* go out on my scooter to a cafe with friends to co-work
* delicious lunch at cafe
* went up and down the stairs twice to do laundry

All without painkiller and did I mention how nice it is to eat real food again after 3 months of gastritis (crackers and broth)? Food is so amazing. I’ve been thinking over my gratitude towards my friends and family for being around and taking care of me while I was so sick. My employer was super understanding about things too, which I appreciated.

Internally I battled the feelings that it was my fault I was so sick and simultaneously that I probably was not really so sick; if I just exerted more willpower I could magically overcome it. Neither of those things were true of course. It’s easy to know that intellectually without being able to believe it wholeheartedly. It is a flaw and a strength that I like to keep the illusion of control. Now that I feel better, I can look back and believe: OMG, I was incredibly ill and weak and unable to eat or barely move around! Every night I think for a minute how I got to the point where I couldn’t straighten out the blankets by myself. Ugh. Fuck that!

Meanwhile my friend Ron has been in and out of the hospital. We ended up in the same hospital on the same floor as next door neighbors at one point which was pretty hilarious. As so often over the years we’ve known each other he was someone i could rely on to chat with and know he totally understands, way better than I know it really, the experience of just carrying on with your life and interests and feelings in the middle of illness, pain, or physical limitation.

I often think over how many times I have been sick or extra limited in mobility and been afraid I will never bounce back. I have always bounced back! I am a badass! Even if I won’t get younger or any less disabled I will remain inherently BOUNCY. Keeping that in mind for next time. (Obviously, having money, support, privilege, and decent medical care also helps; I’m very lucky.)

Here is a photo of me holding up a giant table saw while wearing a tshirt with a stencil of a person in a wheelchair with flames coming out the back,

My extra nice news is that I have been driving my car a little bit, 10 or 20 blocks at a time. I’m not able to do that every day and it makes my leg and ankles hurt but wow it’s fun. I was right on the edge of selling the car. I had this moment driving the car back home from Double Union one night where i was singing along with Fairytale in the Supermarket and some other Raincoats song and crying at how nice it was to drive 20 blocks in my car independently. Ridiculous but true and I’ll never forget the feeling. Now I’m back to sometimes driving and using my manual wheelchair, which isn’t really better than scooter + bus, just different. I feel more nimble and sporty in the manual chair. It’s more fun for me if I’m indoors or have only a block or two to travel. It also makes taking a cab by myself easier to do, since I can disassemble and lift my manual chair (a Quickie Ti II) without any fuss. Going downhill once in a while is really fun (speed!!) and I love to balance and do wheelies, and the lights on the front wheels.

During the illness I was on a lot of painkillers and just needed to pass the time. I played Hoplite a little bit, nethack, and read all of Agatha Christie’s published detective novels and short story collections, taking notes on each book and vaguely thinking about what her stories reflected of history and social change. It seemed like a good “i’m going to be ill for at least 2 months” non-taxing goal. I felt a little sad to come to the end of her work. But not quite sad enough to find the paper versions of her romance novels that she published under the name Mary Westmacott. Maybe someday through the library.

My sacroiliac issues are acting up so it is tormenting me to be in pain all down my leg. Think “cranky old lady with sciatica”. The nerve pain makes my right leg cold-sensitive to the point where just room temperature air feels like a million ice needles. And sometimes my leg collapses without warning. Fuck that! Thank god the pain clinic moved up my back injection a month, so I get it next week (steroids + anesthetic in the s-i joint, takes me down for a few days but then is amazingly effective). I always forget how it is. I am nearly desperate enough to go back on lyrica or cymbalta or something. Nearly. Crazed with pain sometimes over here. Yet still functional to walk around. The last injection was in I think early October so I’m overdue for it. Maybe someday they can just fuse that thing or put in a metal plate or something. It seems like a very stupid and useless joint to have arthritis in.

Double Union is completely awesome. The kids and Oblomovka are great. I’m enjoying work and messing around with Python for work, looking forward to PyCon in April.

My hope now is to be able to keep up this pace of leaving the house a few times a week, make it into the office regularly, and start swimming again at the YMCA downtown. OK hopefully that’s off my chest now and I can write about other stuff like books, games, hackerspaces, feminism, and work!

Geek Girl Con, Saturday!

October 19, 2013 Liz

I’m at GeekGirlCon today!!! It’s awesome! 3rd year in a row!

I spent yesterday in The Attic, Seattle’s feminist community workshop/hacker/maker space. The Attic’s booth here at GeekGirlCon is representing the space’s combination of fiber, art, tech, robots, geekiness, hacking, and making things very beautifully and there are tshirts and stickers! That’s where I’ll be on Sunday morning and part of the afternoon, orbiting between the games area, the Art Alley, and The Attic’s table.

Here are some quick shout outs to people I talked with today and cool stuff I saw.

– Heroes & Inspirations who make jewelry and art. Their new Ladies of Science series is great. There’s a Heroes and Inspirations Ladies of Science Kickstarter! I’m definitely backing this project and want several of the wearable tributes to admirable scientists!
– Stasia Burrington who has a print (and tshirt) of a woman in a pile of cats and another that I love that is kind of the same concept with books. As I look through her etsy shop I want to buy a zillion prints… her work is so charming!
– Bhaloidam, an interesting board game that is a storytelling RPG.
– BigBrainedSuperheroes Club, a STEAM education organization!
– Monkey Minion Press who have very beautifully done posters with SF retro WWII themes, often somewhat creepy.
– ReelGrrls who are working with young women to teach video production skills and to support their work as film makers.
– Women’s Funding Alliance which is a big philanthropic collective.

I got to talk a bit with Tempest who was on the panel “Changing Culture in Mainstream and Alternative Spaces” which I thought of as the “safer spaces” strategy panel. The panel was good. I also met up with Sigrid Ellis who I know from WisCon and who is now editing Apex Magazine. In a totally lucky random encounter I ended up talking intensely with Elsa S. Henry from Feminist Sonar and went to her Disabled Geeks panel which was not in the schedule booklet but which was well attended. Here are my notes on the panel! They’re a bit rough and were basically liveblogging that I have not fully edited.

Elsa and Stevi Costa are speaking on the Disabled Geeks panel. Elsa’s talking about comics and characters with disabilities. Disability is used as a narrative crutch. The words “inspiration porn” are also being tossed out there . . . for those of us who might be hate-watching things like Glee or watching Push Girls. (Audience LOL, ruefully). Disability is too often used as a metaphor for overcoming obstacles. It’s rare to have a character born with a disability who did not get bitten by a radioactive spider but has been how they are since birth.

Discussion of the Glee character who is a wheelchair user who is played by a non-disabled character. Elsa describes the horrible scene where he gets up out of the wheelchair and dances, which many people felt was a huge problem, since you don’t have to miraculously get out of your wheelchair in order to dance. You can dance while using your wheelchair or while you have whatever other impairment you happen to have in your life. Your dreams may be things that you can actually fucking do. Etc. An audience member describes her teeth grinding as the pretty girl gets to walk across the room getting out of her chair in some other episode. As if, aww, the other guy is the loser in the chair. There is also an Xmas episode where the guy wishes he could walk. Critique of the “walking” exoskeleton thingies. My personal reaction is that I am kind of glad I have never watched this show.

“Yay, accepting our cyborg bodies and then we become your OVERLORD.” *audience cheer*

Something something crip sex. (I had lost the thread, but start paying attention at these words…) “How did that feel to you?” “I dunno”. It was amazing but it just can’t make up for that dancing episode. Another episode where bullies take a blind person’s cane away. That was a painful moment for Elsa since people have done that to her deciding that she doesn’t need her cane so that they can bully her. Invisible disabilities represented, for once the character with Downs Syndrome is played by an actor with Downs. Great character usually but the school shooter episode was incredibly bad. Inconsistent with the character, makes it look like PWD have no future after the insitutional support of childhood and youth. Yes there is fear but they blew it out of proportion and people said online “I wonder if that’s going to happen at my school”. It represented disabled people as violent when actually we are often the targets of violence.

How about Oracle. (I cheer). Elsa loved Oracle, a great superhero with disabilities. And then they took her away. Oh, you’re disabled, you’re like one of the X-Men. No actually I’m not. And Oracle was a woman with an actual disablity who lived with her physical impairments.

In contrast in the Daredevil movie, she lasted 2 minutes, the movie was too much. “My nickname is snarkbat, I use snark to echolocate.” Why doesn’t he use the cane while he’s in the costume!? I’d like to see a superhero who uses a cane. So I had someone make me one. People with disabilities should be able to cosplay anything they want. My blind cataracted eye is not a special effects contact! Please do not ask me where I bought my own eyeball. Then I will tell you I bought it at Rubella and you will feel like a jerk. I’m playing Odin today. (Elsa holds up her cape with a raven (Munin) attached to the shoulder.) (I asked her earlier if it was Hugin or Munin) People ask Hey where’d you get that awesome contact, they assume you couldn’t be disabled so you become strangely invisitble again. Elsa asks for abled bodied people to not cosplay disability. It makes many of us really frustrated. We need to be recognized and read as people with disabilities. If you are playing disabled with your pirate eyepatch you are making the world worse for people who actually need to wear one. The fictionalizing means the people aren’t reading us as real.

Why would you go to all the trouble of finding visually impaired young women to play helen keller but as the understudy for the not-visually-impaired main actress who got cast for the role. There could be the name recognition if you start casting us in the roles.

Cons and accessible space. Getting trampled and pushed around in crowds. This con is good. People are educated to the point where they are not pushing into people in wheelchairs, people with white canes. This con has an introvert alley so people can go have some quiet space. We have a wheelchair lift here at the stage. (though . . . no one on stage who is a wheelchair user. . . .) Stevi asks Elsa when she goes to larger cons that don’t have any focus on inclusivity do you feel that you become invisible? Geek culture is not as inclusive as it is supposed to be. That is why Elsa does not like to go to cons. She doesn’t like feeling invisible and being trampled. She lives in NYC and is used to that environment but to come into a safer space where it’s “our people” it would be nice not to be run over. (I so strongly agree!! This feeling only grows in me that we have to insist on respect from our communities.)

Audience question about therapy dogs and fakers. Yeah Hmmmmm. Panel handles this question with perhaps too much patience. OK I popped up and asked the asker if she has a special need to police whether people are really disabled or not or a concern over being allergic to dogs or dog phobic so it becomes an issue for her or people around her. Come on. Is this the moment?

Elsa talks about how she wears glasses and can see partially. People go Hey are you really blind? Yes. they don’t give white canes out like candy and I really need it. People come up to me at cocktail parties and ask me how many fingers they are holding up. People just take my cane because they are curious. It’s not okay to just investigate my disability. Peeople with disabilities are not public property. We are human beings. TELL IT. Stevi adds that we narrativize it to where the story is that you have gone from being able-bodies to disabled and that is the dominant story.

Aud comment about being happy to be talking about people who were born with disabilities and glad we’re having this panel. She wants to talk about more pop culture and the show Covert Affairs. The character who is super sexy and confident. He is not really blind but the attempt to make a positive character is awesome and rare so props to them for trying. Elsa says she will have to watch it. She is the only blind burlesque performer she knows about. How does she know she’s being attractive? Well, she practices a lot and asks her friends if she looks good in her costumes.

Aud comment about the school shooting story. She wants to know recs for characters where their disability is not the issue.

Elsa recommends Switched at Birth it is sort of ridiculous and has some sort of weird republican thing going on, but they have an entire episode done in ASL where the characters are all teenage girls.

Stevi likes the Michael J Fox show because they address the inspiration porn question head on, in episode one and then they move on and he is just a character who happens to have Parkinson’s and that isn’t what it’s about. The first episode includes some epic crip humor. Then it becomes a normal family sitcom which includes a character with a chronic condition.

Another rec from the audience, the forensic doctor on CSI. He plays guitar, he happens to have one leg, he is awesome.

Back to superheroes with disability. The character Hawkeye lost 80% of his hearing. it became part of his character but then of course then in 2000s he got reset.

Can we stop resetting the disabled characters? OMG.

Fanfic writers cherrypicked that one detail and wrote after the Avengers movies how he had hearing loss. A lot of it was great but there was also a lot of problematic aspects where people wrote it as inspiration porn where he overcomes his hearing loss etc.

Breaking Bad and a character where a disabled actor applied for a character who was written as able bodied and he is a great actor, they just put it into his character, they didn’t reject him from the role, it was just like the color of a person’s hair or whatever.

Cosplay and able bodied people and disabled people What if there is an able bodied people who really likes Oracle and wants to cosplay Oracle. What if there’s a person in the wheelchair who wants to cosplay Supergirl. What then.

Elsa says people in wheelchairs can cosplay whoever they want. But if you are able bodied and want to cosplay Oracle just dont use a wheelchair. If you dont need it please don’t use it. Do not put on cripface. Geordi’s visor is fiction, it is not a real device so it isn’t going to be mixed up with reality. Stevi thinks it is possible to use an assistive device in cosplay in a way that is respectful, but it is tricky. Elsa wants people who are not disabled not to be read as disabled.

(Personally I have some complicated feelings around this and I don’t like the idea that people think they can just play disability. What the hell, isn’t there enough to play with? And, it is even more complicated because of actual discrimination and also I would add in fetishists as an issue. I don’t like the idea that, as with actors, Non disabled people get attention and fame from pretending to be us and perhaps “doing it better”. They get rewarded for performing “disability” in ways that are more acceptable to mainstream culture than the actual lives and being in the world of those of us who are disabled. How can this not fail to be offensive and have the fake cripple come off as perky or happier or reacting in some way that gets props from people who want everything to be okay. My first reaction is that it makes me instantly angry. I let people ride my scooter and manual chair to experience it as fun and not unimaginable. But I hate the idea that people would pretend they are disabled as their costume. )

Elsa talking about her current work writing a game module for ghost hunting blind people, warriors of midgaard, for role playing games. I know how to do and represent this thing. Pay me to do it. Rather than thinking you know it all and faking it.

Orange is the New Black, best humor moment with wheelchair, Scared Straight group goes to the prison and one of the prisoners goes you think you’re really tough . . . She is the most bad ass, I will shank you so hard character.

The panel wraps up. I did not count the attendees but would estimate 30-40 people as I think back on how full the room was.

YAY, great panel!

The Superfest Dissie Awards

October 13, 2013 Liz

I had a great time last night at the Dissie Awards, part of Superfest, a very long running disability community film festival! Lawrence Carter-Long MCed and presented 3 or 4 short clips for each category like Worst Portrayal of a Disabled Person by Non-Disabled Actor and The Worst Disabled Villain. It was nice to see a bunch of local community leaders get on stage to accept the awards — some of the fake acceptance speeches were hilarious! Audio Eyes did an outstanding job of funny, sarcastic description that felt like watching Rifftrax or Mystery Science Theater 3000 rather than a boring documentary narration. Would listen again. It was great.

My favorite was definitely the “So Sweet” which was about cute little white girls sweetly helping disabled people so I got to give several hearty rounds of booing to Heidi and Pollyanna (who along with Katy from What Katy Did, take up way too much of my brain with their angel in the house internalized ableism).

The event started off with a cocktail hour which I missed and then Lawrence opened up with a charismatic speech about how we would discern, disrupt, display, and discover as we Dissed.

I can’t remember all the nominations but I did tweet most of the award winners for posterity. The Worst Performance of Disability by a Non-disabled Actor Dissie went to the guy playing the blind old man in Young Frankenstein. Prof. Georgiana Kleege accepted the award. In the world of Young Frankenstein, apparently blind people cannot get anyone at all to come over and share their soup. So sad! It was lovely to feel the audience reaction all around me as we cheered and booed how bad all the performances were as they played off stereotypes and made disabled people the butt of humor. It was often a hard call which movie to boo the loudest for as the judges watched and listened to the crowd, because the spectrum of Hollywood badness was so vast!

Shirley Temple in Heidi as she teaches Klara how to walk and then ends up being more important to Klara’s family than she is, won out over Pollyanna. It was a very hard call for me. Was it worse for Heidi to be telling Klara she could walk if she just tried hard enough? Or worse that Pollyanna told her sick neighbor lady, the one disabled person in town, that she wouldn’t die if she wanted enough to live, and then stormed out in a huge ragequit? The deciding factor for me was that it was extra, extra horrible for Klara’s dad not to love her until she could walk! Christina Mills from the California Foundation for Independent Living Centers accepted the award pointedly remarking that ther are great organizations like California Youth Leadership Forum where Klara could hang out instead of being with that poisonous little brat Heidi.

Joshua Miele then took the stage to accept the award for Worst Miracle for the actor playing the paralyzed guy in Monkey Shines. I think it was voted up because the movie’s badness outshone the actor’s bad portrayal! Personally I was rooting for Forrest Gump and the moment where his leg braces exploded off his legs as he ran like a world class athlete. But hey, we’re taking this super seriously, can you tell? Josh invited his alterego, or friend, Manny Zannasshole, to give a speech about his sensitive directing and producing of this miracle moment inspired by his knowledge of “the differently crippled, or whatever you people are called these days, people with crippledness” provoking a giant laugh from many of us in the audience.

Most Tragic was a painfully stupid display as we saw Clint Eastwood feel the terrible pain of the actor in Million Dollar Baby asking him to put her down like her family’s old dog because she could never be on TV again. Wow! It had to win for being most actually horrible and harmful to people’s lives. For me it is a matter of people telling me to my face that they think it is better to be dead than like me, that they would kill themselves, etc. But for many of us it is directly a life and death matter that threatens our survival as nurses caretakers or even family members decide to express their mercy or support a person’s suicidal thoughts instead of getting them help or fighting to change their situation and society at large. So Million Dollar Baby just had to win. Victor Pineda took the stage for the award and was super badass and funny as he told Clint Eastwood he might be better off dead than that ignorant and Hilary Swank’s character in the movie could totally have better friends if he would get out of her life. I’m paraphrasing but that was the gist of it.

Dr. Strangelove then beat out Mr. Glass from Unbreakable for Worst Villian. There are SO MANY. Strangelove has to win for popularity and for the thing that most people want to joke about when they want to joke about your wheelchair. But Mr. Glass was more truly the winner for his villainy being based on his internal bitterness over being disabled! Reverend Scott (?) went up on stage to take the award with his one black glove! You would almost think he had expected Dr. Strangelove to win. . . do I smell a fixed contest here?

The Crips Gone Wild category for buffoonish portrayals of disabled people causing havoc (AS WE DO) gave us clips from Other Sister, Radio, and Blind Dating. They were all horrible. Blind Dating with a very extended scene of the guy trying to fake that he wasn’t blind on a date in a restaurant. Comedy gold!??? Aaaaagh! Then the last category was “Hey, Only We Can Laugh At That” for truly bad comedy that is “Satirization without representation”. They were all awful and I have forgotten which one won because by that time it was quite late and I was tired.

My teenage son came with me to the Dissies. He enjoyed it a lot. He laughed his head off and I was happy to share some good political awareness and humor with him. He gets enough of it from me day to day just doing things like riding the bus. How nice that he knows it isn’t just me making my usual sarcastic muttering comments. He will grow up knowing quite a lot and being a good ally for others, as well as having gotten all the awesome wheelchair and scooter rides possible.

I hope this event happens again! Thanks to the Longmore Institute and the SF Lighthouse for sponsoring Superfest! I hope I can come out to more events and meet people — I often feel totally disconnected from whatever Bay Area disability activist communities are out there as I flounce around in my own little world. I have the community feeling and solidarity online but not in person and hope to connect more in the future. Anyway, if this happens next year I will wear a sparkley tuxedo and do it up in real movie award style !!

Taking up too much space

October 13, 2013 Liz

Last night I had the incredibly pleasant experience of realizing I was in a crowd but no one was considering me as “in the way” and I didn’t have to worry about that with the same level of awareness I do in crowds where I am the only or one of few wheelchair users and where people are sadly ignorant of their own bigotry. Instead I was in a crowd where audience and performers were people with disabilities and their friends.

A layer of tension dropped away from me. I would not have to be apologetic, diplomatic, and assertive to the point of defiant all at once just in order to sit and watch the show or move around the room. No one leaped out of my way or yanked their children closer while I was 20 feet away from them. If I was in line, no one acted like I was the one person in line who was just where I should not be. If someone needed to get between me and another person or people in the room, they were just ask likely to say “excuse me” to any of us, politely, rather than picking me out and letting me know I was the one In The Way. I thought to myself: How low my standards have gotten, my expectations for other people’s behavior! How sad! But what a relief at least for this moment, this event!

This particular kind of bad behavior seems to me like it is unconscious but it reflects deep unwillingness to have people with disabilities in public at all or to consider us fully human. We are not considered citizens of the world. When we are in it we are always In the Way. A person with a suitcase might be in someone’s way. But just by being anywhere in a wheelchair people want to decide where I should be and put me there. It’s like, get in the corner!

This happens to me every day in every store, street, bus, or event I go to. It happeend last weekend at my conference and in the airport and in restaurants and bars and everywhere.

OMFG, you damn walkies!! Chill out!! We are all just people co-existing in space! Say “excuse me” if you want to get by, like you do with every other situation! Like I do if I want to get by as well! Don’t be acting like I am too big or too fast or must be specially humble and apologetic before I get to take up space in the world!

Tuesday I was at a conference party sitting around a table on a big, open patio. Behnd me there was a little group of people talking. After about the 10th person shoved into me trying to go between my scooter and the group standing a few feet behind me, some guy said something about how I should move so he could get by. I had had enough. I turned on him like a motherfucking cobra and said, “Why do you not just ask the guy right there, the guy behind me, tell HIM to move? Say excuse me to him since he can step aside easily and I can’t.” About 1 out of 100 times this happens, I explain it to some random stranger who wants to walk through a line or a crowd and point out they can just as well ask a standing-up person to move.

My loved ones and friends are very familiar with watching this play out. I am comforted that they notice how it happens over and over and that they share my reality. Constant social aggressions (I can’t bring myself to call them microagressions) take their toll.

Last weekend at the end to my own work conference one of the conference organizers told me I was in the way because “PEOPLE” needed to get by. She gestureed at the scooter with a sweep of her arm. PEOPLE might need to get by!

My scooter was not in the way. It was parked behind my own chair at a table with plenty of space behind it and not blocking any corridors. She did not seem concerned that ALL OTHER WAYS and all other places to sit were blocked for me, because in her mind, I am not “People” who might need to get by. I am an inconvenient Thing — that unfortunately can speak. I told her I had parked carefully so that no access for anyone else was blocked. The people next to me could get up from their chairs without any trouble. Others could walk past in every direction. But her sense of the rightness of the universe was perturbed, for her, unbearably by my presence.

That sort of thing happened over and over in the course of the weekend. It is why I talk about community education. People need to think through their assumptions and their bigotry. I can’t teach everyone how to behave, on the spot, all around me, every day. Don’t shove into my wheelchair like I don’t exist. Don’t pat me! And don’t fill up a room so I can’t get around, then tell me I can’t be in the one spot I can get to! Don’t lock the elevators and don’t act like I’m a liability waiting to happen! How hard can it be to treat me like a person?!

Last night I was overwhelmed with the feeling of not haveing that feeling. Then as I paused in an alcove of the lobby of the SF Women’s Building to call a cab. An usher for the event, I am fairly sure a volunteer or associate from the building not from the event itself, was standing to the side and in front of me. She told me I was in the way and asked me to move so that people could get by. Amazing! I looked up at her and pointed out, the corridor between the alcove I was in, and the central bit where the elevator was, was enough for at least 3 people to pass, 2 moderately sized wheelchairs, I was not in the way of anyone, and, she was standing more in the middle of the corridor while I was off to the side, so really, she was in the way much more than I was.

I asked her why she felt I was especially in the way more than herself or anyone else. She was unable to answer. I said it was egregious and horrible for her to say this to me and put it onto her to think about for her future. I said it at some length but diplomatically and included the words “I am angry.” I was extra sad because she looked like someone I would in most situations be friends with and want to talk to. Meanwhile people rolled on by us leaving the building and sometimes pausing in the hallway to chat with each other, as people do. No one evidenced impatience or acted like anyone else was in their way.

Well, I must report that I stayed in the spot. I took a picture of people passing by me and then called my son over from where he was sitting with his book, to cross the lobby and take a photo of where I was sitting so that I could write this up and show how very Not in the Way I had been and why this stupid incident made my head explode. I could hardly have been less in the way of anyone at all!! You can go to that exact spot in the Women’s Building and stand or sit there and see for yourself how unobtrusive it is.

Intheway-hallway

The sign in this photo is offset (way closer to the camera) and not in line at all with where I was sitting. It may also not be clear but I am fully in a little alcove, ie, my wheels were inside the curve of the stairwell. In other worse this was my effort to park temporarily in a place where I would not block any traffic or be stumbled over.

It would have been maybe more sensible of me to go wait and text on the other side of the lobby. I get that. But…. I had the feeling of just being a person in some space that many people were using. Many people were standing around. They were not told to move. I could not believe I was considered to be in their way but they were not in mine. My fellow chair and scooter users were just hanging out and were capable of saying excuse me to each other if there was any inconvenience. I *knew* if an able bodied person had been standing there, in the same spot, taking up the same space, the usher would not have perceieved her as an obstacle.

Here is the view from my niche as people went by.

Corridor womensbuilding

I don’t think I swore at the usher and I remained “polite”; it was full on fierce coherence from me as I explained exactly how bigoted her action was. At some point my child and I went to the door to look to see if the cab was there and then we went to stay on the other (totally empty) side of the lobby.

As we waited for our cab at one point I looked up and saw a woman talking on her phone, standing right smack in the middle of the corridor several feet directly in front of where I had been waiting when I was in the way. She stood there a few moments as the usher looked right at her. Finally I rolled up and addressed the usher conspiratorially. “Hey, I just wanted to point out how very In the Way that lady is. You should tell her!” The usher said “UMMMM . . . . DO YOU WANT TO HELP ME MONITOR THE HALLWAY?” Nice move, actually, that made me laugh! It was a pretty decent attempt at defusing, but she had already gone too far and was a little too condescending for me to bear at the moment because she never bothered to apologize. How hard could it be to think it over for a moment and say, “Oh, I guess I did that. Sorry!” Apparently harder than figuring out a strategy for how to co-opt the angry cripple. What the hell is WRONG with people! Hahahah!

I go into a place, I think about where to put my scooter or wheelchair and where I can sit, and whether I am going to need to park it away from me if I sit in another chair, and whether I need help to move things to fit into a space politely, and so on, ALL THE TIME!

But people want to scold me and explain how I need to behave no matter what I do, because disability is disruptive and they feel perturbed and in need of being in control of something they don’t understand. How many bus drivers scold me and tell me the right way i should wait for the bus, signal the bus, get on the bus, be on the bus, communicate with them at all, and get off the bus. Do they think I was born yesterday? They scream at me to tell them where I’m going, they refuse to let me on because there is “no room” though they just let 20 walking people on before me, they scream “WHEELCHAIR GETTING ON!!” 5 times at the whole bus before they extend the ramp for me as if I’m incapable of going the 5 feet onto the bus without ramming every person there without the Enterprise going on Red Alert. They can’t take any of this knowledge on themselves and they’re not scolding other people who might take a moment to fumble for their bus pass but it’s open season on wheelchair users to lecture us like you’re a goddamn social worker. Nuh-uh. Not having it.

I am not an emergency or an obstacle! Get used to it! My public presence will just have to be YOUR mild inconvenience!

This ends my minorly pissed off rant and I will now go write another post about how nice the event was and top-post it on top of this long angry assertion that I and my MONSTER TRUCK MECHA SUITS can exist in public.

Weekend of random activities

September 23, 2013September 24, 2022 Liz

Looking back over this weekend it seems so quiet and low-key yet packed full of action on another level. I stayed at home after a very active week.

Tuesday was our Double Union Tea and Lightning Talks at the Mozilla community room. Over 60 people showed up. We had about 10 talks. The food was all devoured (next time I know to ask for more of it.) People all seemed super happy to be there and I had a great time MC-ing with Amelia! Wednesday I took half the day off and road tripped with Len and Rose up to Novato to see our friend Ron from Ophoenix who I love and admire. He is cool, mathy, wise, funny, good hacker, and a great activist. Ron is one of the people I co-exist with on ambient IM. I likewhen people are kind and compassionate yet can have a sharp edge; we seem to share that. Driving to Novato for me and Len is actually a road trip since neither of us drive. We hung out and just rambled nerdily all afternoon long. It was fabulous! It was also the first time I’d met Len in person and I want to go hang out with him in Santa Cruz. Especially as he described how he bakes bread all the time.

Thursday I spent an intense evening at the Pioneer Awards with Danny. Still extremely sad about Aaron; it seems surreal that he is gone. (Whatever I feel is nothing to Taren’s and to Danny’s daughter who was close to Aaron for years; but I’m still really stunned.) I developed an instant activists’ crush on Laura Poitras for being the sort of modest documentarian and doing things that are of use. It was good to hear what she had to say and see her huge grin on the screen! I had a brief but good conversation with Jamie Love and I wonder if I can kick the WEEE repair manual access idea to them. I have so much admiration for what they did with WIPO! Hugged and talked with a lot of other people there who I really love to see and don’t get to see enough.

It feels like cheating my blog to sum up the week this way. But oddly… or not… I want to dwell on my more private, homebody, intellectual life.

Friday I came down with a cold, maybe not surprising after all that running around and working on top of it. I usually don’t leave the house two days in a row even to go up the street to the corner store.

So this weekend I nursed my cold, drank a bunch of nyquil and took naps, flung kleenexes around (till saturday afternoon when i cleaned up) but also did a lot of reading. I ripped through a few more books I’m reading for the 2011 Carl Brandon Awards (the award is a little bit behind and doing 2 years simultaneously to catch up.) It is a joy to be on book award reading juries, not just to have a giant stream of books coming at me, but to have so many *new* books I can recommend to people! And I can’t wait to have some discussions and hear what the other jurors think. All of which we will be doing scarily soon.

I also read Looking for Transwonderland by Noo Saro-Wiwa and enjoyed it, though I gave it the side eye a few times I am also a fan of order with liveliness, showers, reliable electricity, people not bugging me about religion, museums, ecology, and less corruption in government so I don’t have much of a place to eye from. I did a fair amount of looking things up on Wikipedia and found a good candidate for developing a new article — on the Esie soapstone sculptures. Here is a museum for the GLAM wikipedia project! The stuff about Susanne Wenger mystical white lady priestess of Oshun also sent me on a wide eyed rampage of horror and wonderment as I fell deeply down yet another internet rathole. O M G. Talked in the language of the trees, yeah…. ok….. Then to adopt 12 local kids and deliberately raise them illiterate? I can’t even!!!!!!

Meanwhile this was going down in our communities: https://twitter.com/ashedryden/status/381465338443202560 and that’s all I want to say about that in public though the private conversations have been going on all weekend. A whole bunch of us can’t talk about it, but had to at least mention it. Ashe wrote a good post: http://ashedryden.com/blog/we-deserve-better-than-this Yes. That is the place we are coming from. You know nothing, Jon Snow. http://twitter.com/shanley also laid down the knowledge and righteous anger.

Other things, I tended my little garden of potted plants, cooked chicken-corn-pasilla pepper soup and curtido, grocery shopped, spent most of Saturday and Sunday with my sister and her 6 year old son. Laura worked on fabrics for her NASA planetary map dresses. Jack played Plants vs. Zombies 2 and other games. We played King of the Beasts with him (a great quick card/board game) and later when Laura went to a meeting Jack and I played a longer cooperative board game called Castle Panic. He was the Master Slayer (fortunately). I read Danny’s emails and twitters from the xoxo conference in Portland and thought fondly of people there.

At some point late Saturday night I went searching for a quote I was thinking of earlier in the week, by June Arnold who has been on my mind lately because The Cook and the Carpenter is so relevant to my life what with the hackerspaces and all. Realized June Arnold does not have a Wikipedia page. Oh!!!!! Like a stab in the heart. Most feminist press stuff is just missing from there. This would be a nice thing I could do, gradually and I certainly have or can scare up some decent source material. I found the quote which is from the 2nd issue of Sinister Wisdom.

I think the novel — art, the presentation of women in purity (also I would include poetry, short stories) — will lead to, or is, revolution. I’m not talking about an alternate culture at all, where we leave the politics to the men. Women’s art is politics, the means to change women’s minds. And the women’s presses are not alternate either but are the mainstream and the thrust of the revolution. And there’s no tenure in the revolution.

That panel of her, Sandy Boucher, Susan Griffin, Melanie Kay and Judith McDaniel was pretty great. I read it over again and was especially happy just holding Melanie’s thoughts about Wittig, Russ, and Arnold in my mind. I realized I have not read Flying by Kate Millet and probably should. Well, I felt happy to connect a bit with this strain of thought. I thought Amelia and others would like the art is politics quote.

Today I read halfway through Extraordinary Bodies: Figuring Physical Disabliity in American Culture and Literature by Rosemarie Garland Thomson. I got cold-emailed by Rosemarie a while back (I get awesome, awesome, emails at random, every week a few more, more than I can handle) and we finally met up at Noisebridge. I felt a weird Instant ability to partially mind meld, or, trust, or, as some people would put it boringly, I made a new friend! In like an hour hanging out we had gone pretty deep into hand waving and assuming the other person knew what we meant (and we did.) I am greatly enjoying the book. It is nicely built academic literary and cultural criticism, flows well.

Here are some bits I specially dog-eared: I did NOT know this about Aristotle. from Generation of Animals . . . “Anyone who does not take after his parents… is really in a way a monstrosity, since in these cases Nature has in a way strayed from the generic type. The first beginning of this deviation is when a female is formed instead of a male. ” Being born female is to be born disabled. “The female is as it were a deformed male…” Then on into stigma theory which we now less bludgeon-ish-ly refer to as being marked and unmarked. OK. Onwards.

Motherfucking Emerson. (I always like to think of earnest Louisa May Alcott characters falling in love over discussions of Emerson. ) Emerson goes on about conservatives and how they are “effeminated by nature, born halt and blind.” They are also like invalids. He lines up men (who are awesome and ethical citizens) opposed to children and disabled people (and women since I doubt he means “humans”) This sentence of Rosemarie’s wrapped it up nicely for me, “Emerson’s juxtaposition of an unrestricted cultural self with a muted other thwarted by physical limits exposes the problem of the body within the ideology of liberal individualism.” OK, maybe you had to be there. IT made me happy. I’m not typing out pages and pages of this and I want to press onwards. Deep into the next section I felt she was laying out out a lot of good knowledge about ways that racism and US-ian concepts of white and black (or non-white) are entangled with gender and disability. good stuff here.

Then like a full on body slam I hit the chapter “Benevolent Maternalism and the Disabled Woman in Stowe, Davis, and Phelps”. (Which god knows I will scavenge off Project Gutenberg and read this week, but I get the idea from her descriptions). Again blackness and disabilty and gender entwine. Check this out. Here is where I get my typing fingers out and smear on the arthritis knuckle cream.

As Stowe deplores slavery’s inhumane separation of families, as Davis reveals the iron mill’s callous victimization of workers, and as Phelps censures the textile industry’s abuse of mill girls, each writer highlights nondisabled heroines or narrators who prevail or even triumph. Their disabled sisters, however, stay on the narrative margins, degraded by oppressive institutions and ultimately sacrified to the social problems the novels assail. . . . While the various maternal benefactresses radiate a transcendent virtue, agency, and power, the disabled women become increasingly subjugated, despairing, and impotent.

Crushed by capitalism’s laissez-faire morality, Prue, Hagar, Deb, and Catty are icons of vulnerability who help generate a rhetoric of sympathy and scandal meant to propel readers from complacency to convictions. Despite their secondary or even minor parts in the actual narratives these disabled women fulfill major rhetorical roles by arousing the sympathetic indignation that activates benevolent maternalism. This impulse was the springboard from which white, middle class women could launch themselves into a prestigious, more influential public role that captured some of the elements of liberal selfhood. . . . . At the same time, however, these novels diminish the very figures for whom they plead by casting them outside the exclusive program of feminine liberal selfhood the narratives map. (emphasis mine)

I had to pause and let that resonate for a bit. Damn! SO TRUE. SO STILL TRUE. I mean in real life not in a novel.

Make me want to go read Arrogant Beggar by Anzia Yezierska all over again like a sort of brain-wash, just thinking what that mill girl novel is going to be like.

So, also, I spent some pleasant hours participating in CSAW Capture the Flag with Seattle Attic’s team. I would love to make it pan-feminist-hackerspace (as it more or less was with me and some others in it). It was super fun, I love puzzles, and felt stimulating! The team was 303rd out of 1300 entrants. Would do this again. I feel the impulse to go over all the puzzles to learn things.

I also fooled around putting the Hubble Deep Field onto online fabric designer stores (I am getting a swatch from Spoonflower and one from ArtofWhere, to compare) so that I can make space pillowcases for my friend Ron. (And maybe for me and everyone I know?) I did not color correct, figuring, try a swatch, if it is good enough, I don’t have to learn how. If it isn’t then it seems learnable. I would also like this nail polish as it is the best space toenail possibility I’ve seen yet!

Then I thought a little bit about RAID arrays and MPD and setting up a feminist media server and book scanner at the new hackerspace.

I thought of my friend Timmi and wished to convey all this to her and thought of writing her a giant letter but instead it is a blog post for anyone and everyone. I will write her a giant letter too at some other point.

I riffled through this feminist online library and thought about what I could do with a hopefully ethical as possible but not quite so limited by copyright law approach to documenting our history.

I had a nice conversation with Skud about Growstuff and development processes. Thought a bit about collective authorship, patterns and antipatterns. It would be neat to take Selena’s git story flash cards and make them into different orders for patterns and antipatterns like we were talking about.

I thought a bit more about sassaman but wanted to write this post instead of working on it.

Bedtime now! “There are some days when I think i’m going to die from an overdose of satisfaction.” Amelia mentioned this quote. We seem similar in temperament. I also write little quotes in the front of my notebooks! And I feel this way. Though I was unsettled, upset, in my usual level of pain (though, enbrel rush on Saturday, yay) and had a cold much of the weekend, I feel so grateful for my inner intellectual life and for all the fantastic people I have to talk with more or less any time. What amazing luck. Hypatia says it is funny that I describe mindfulness as “being smug”. I think of mindfullness as involving more meditation-like sitting still, which I’m incapable of without morphine. Some days I work, eat, clean up, hug everyone, read a little escapist fiction and go to bed. Those are good days even if I end up in tears (from pain usually). Danny and I have great conversations, I feel understood and he always has some new thought or source of interesting knowledge like a fabulous fountain of ideas. More than half of my days I think are like this last week and weekend, flitting from idea to idea, happy to be a dilettante, so happy to read quickly, and sure from past experience that my efforts will combine to make something good, a book, a group, a conversation or a chain of ideas that people remember and value, so that I feel like my time and effort doesn’t just slip away. (At best I accept and believe this; at worst I beat myself up for not being productive enough.)

I hug you all and leave you with this calming manatee. We can’t fix things quickly. What we have done and built, especially our friendships, social ties, and institutions, stand and have affected things. What we’re going to do will make change as well. It is happening, trust it and be comforted.

Calming manatee progress

Hipster Habit App; strategies to cope with pain

August 21, 2013 Liz

Last week I printed out my friend Amelia’s Hipster Habit App to try it out. How much more could I possibly love this little site that is just a one page pdf that you print and fold into a tiny pocket zine, but calls itself an “app”. Yay! So silly and awesome!

Zine cover

I wrote “naps” into the blank and circled “chilll time” as extra reinforcement. On the second page of the zine I committed to lie down and close my eyes for 5 minutes a day at noon, every day.

After the first try at this I thought that I should go back and change it to 10 minutes. Five didn’t seem like enough. It was just enough to lie there feeling pain in my knees and hands, fingers and ankles, and for exhaustion to surge over me like a horrible heavy blanket. At the same time I had a million ideas of things I needed to remember to do, lists to make, errands to run, work emails to send, weird inventions, things I wanted to cook. So many impulses to leap up and grab my notebook to write down the lists! Instead I tried to drift into incoherence, even drifting with the pain, and think about breathing deeply and calmly.

Actually, 5 minutes of that is plenty!!!

After a week of 5 minute “naps” I find that the habit reminds me to slow down. It makes me realize that I should take some painkiller (currently tramadol, and topical voltaren), AND rest, rather than run myself into the ground over the day. 20 years of weird annoying arthritis means that my main strategy of life is to ignore pain as long as I can until I absolutely drop. Distraction is a great way to deal with pain. Fidgeting and stretching also keeps me from stiffening up so I get up a lot from working even when working from bed.

It helps me to consider my activity level that day. Am I walking too much, sitting with bad posture, do i need to adjust my activities planned, put off doing errands or laundry, get help from other people, stay home, put on ice packs, lie down more? A useful reminder to consider those things.

After a month according to the zine I could increase my habit by 10 minutes. Actually, I’m hoping one of these days I’ll really fall asleep and have a nap. That would be so good for me, but it’s so hard to do when my knees and ankles hurt so much. I look back and can’t comprehend how I coped with last year’s pain levels. I will try never to stand for (hahaah) that much uncontrolled pain again. It is criminal that I was expected to. It’s good to have better medical care. Tramadol is working out well, intermittently when I need it, as it cuts the pain level without making me feel dopey or fuzzy minded. In fact I feel pleasantly amped up even with half a tramadol. Most of the day, I can think clearly, focus my mind, and have lots of energy. Some of that might be a side effect of the drug, but I think most of it is just being more free of pain. Pain is exhausting!!

Compared to last year at this time, I am doing amazingly well. Last August I was still on medical leave only just barely starting to be able to walk without the moon boots (aka walking boots for ankle injuries) I still had 2 or 3 wedges elevating my ankles inside the boots. Without the boots I was still shuffling. Now I can take full steps with a weight shifting gait for most of the day. I can go down and up some stairs, almost full on instead of sideways, though sideways is still much easier, with a cane. I thnk it was my enthusiastic stair climbing that really got my ankles in late 2011, so more caution would be wiser.

One more anti pain tool in my belt is that I have my San Francisco medical marijuana card. It was hilariously easy to get. I am curious to go into the nicer dispensaries around town to see what they are like. So far I have only been into the Bernal Heights Collective one, which was like a sort of seedy cafe/biker bar atmosphere and awfully smokey inside. I bought some hand salve, which is helpful at night on my distal finger joints, which hurt the worst, and doesn’t seem to affect me in other ways other than the one time I got carried away, smeared it all over my wrists and knees in desperation and curiosity, and fell asleep high as a kite. In moderate amounts on one’s knuckles it doesn’t have any euphoric effect at all, and is very helpful for pain! If you have painful arthritis or know someone who does, let them know. Pot hand cream all the way!!

The other factor this year is that I have steroid injections every 3 months in my sacroiliac joints. Can’t remember when my next one is due but I am wishing for it on the right side, the last couple of weeks (my bad side, that makes me limp and drag my right leg). I also am in month 8 of Enbrel injections (an immune suppressant). I inject it every week into my stomach. It is funny but every time I think of my mom telling me when I was little that if you got bit by a rabid animal, you had to have INJECTIONS INTO YOUR STOMACH, which sounded like the worst, scariest, grossest thing ever, even to me who had allergy shots once a week in both arm that would swell up like subcutaneous tennis balls. I find that injections into the stomach at least with a bit of cushioning is easily bearable. Though I have pierced my own nose and given birth with no anesthesia so you might not want to take my word for it . . . I’m a complete badass.

Sometimes I kind of forget that other people are not in horrible pain all the time. Like they just aren’t in pain at all. They tweak a muscle or something and are like “Ow!” or they get a cold. Then I remember that, when i compare myself to other people and I worry that I might be lazier or wimpier than other people, it doesn’t actually work that way. It is something I have to constantly deal with and, not fight, but just be with. It is a constant factor. This actually means that I am good at dealing with pain, and know how; it’s a skill. It’s a bit like I am a secret magician deploying force field armor around myself or have some extra sense into the world of, you know, the internal bits of my ankle tendons or whatever. One more thing about pain while I’m on a ramble: it is very true that you (me) can be in pain all the time, yet be extremely happy, and have a good life. I would say that it takes time, endurance, and work for that to be true. It may also be luck of temperament.

OK…. maybe that is enough.. the hand cream might be kicking in.

That all crucial three dollar check

August 2, 2013January 6, 2019 Liz

So, disabled people in theory get to ride public transport at a discount rate in San Francisco and in fact in the entire Bay Area. To get my disabled rate card for the bus I had to bring my accessible parking placard to an office in Downtown SF and pay some nominal fee for a card. This proves I’m disabled I guess. Most transit cards, you can just buy at a Walgreens or in the train station.

That errand took nearly a whole day for me to take the bus, wait around in this office, get sent to the DMV for some reason I couldn’t fathom, spend hours at the DMV, get back on my 4th bus of the day to the Regional Transit Center office on Van Ness. Pay my 5 bucks or whatever it was and be done. I got a plastic card with my photo & an RFID chip. But this is already bullshit. How much proving I’m disabled do I have to do here for this petty benefit? Can’t DMV make it known upon request that yes, in their eyes, I’m still disabled?

Once I had the card – maybe a month later — I could get online to refill the card and even set it up to refill automatically once a month. That part was nice.

In July, I got a badly xeroxed form with a handwritten note saying I needed to check a box to say I was still disabled, and write in the number of my parking placard. I also had to enclose a check for $3.00. Ridiculous!

So I sent this form in a couple of weeks ago. Today my bus pass suddenly didn’t work.

I called the Clipper card people who told me to call RTC which is run out of some company called Cordoba. They said they were getting tons of phone calls, because many people hadn’t gotten their renewals yet.

The phone call with RTC was just frustrating. They acted like they were angry with me and were very condescending. “Well, did you SEND IT? Did you send it to (po box and address.) How do I know? I sent it to the address it said. “Well did you enclose a check for $3.00? If you put cash in, that doesn’t work.” Yeah I’ll bet it doesn’t. They haven’t gotten my renewal letter, and didn’t have any suggestion about what to do other than wait.

The whole process is so silly and inefficient. They need to recognize that lots of people aren’t going to become magically un-disabled, and save themselves a lot of petty paperwork. I wonder what actually happens to that piece of paper I got mailed? No one needs that damn piece of paper! And I don’t think they need any yearly check for 3 dollars either, isn’t that what we pay taxes for?! Really you are gonna hassle every single cripple in the Bay Area every July for a check for $3.00?

I bet that has bad results especially for all the people I see downtown who might not have their shit together to the degree I do. I doubt the intended service manages to serve this population well.

/end rant.