disability – Page 8

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.

AdaCamp meanderings

June 7, 2013 Liz

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

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

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

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

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

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

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

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

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

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

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

The bottom of my ramblin' shoes

February 3, 2013 Liz

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Hurricane relief: Do something!

November 1, 2012 Liz

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Wheelchair and Scooter Hack Day

October 3, 2012September 24, 2022 Liz

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Cruise control hack on my scooter!

August 9, 2012 Liz

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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