Posts Tagged ‘crutches’

Ruth Fielding of the Red Mill, 1913

I remember Ruth Fielding as being bold, thoughtful, creative, brave, and somewhat of a no-nonsense personality, who works hard on achieving financial independence. She was an orphaned teenager who comes to a small town to live with her mean, crusty old uncle Jabez Potter who runs the local mill on the banks of the Lumano River. His arthritic, hunchbacked, ancient, warm-hearted housekeeper “Aunt Alviry” is not actually Ruth’s aunt but is a servant and for a long time is the only person who loves Ruth. Uncle Jabez doesn’t believe in educating girls. But Ruth manages to win him over somehow. Anyway, Ruth goes off to boarding school at Briarwood Hall with her rich, beautiful motor-car-driving friend Helen Cameron, makes friends with everyone, and ends a terrible schoolgirl rivalry by creating just one big sorority, the Sweetbriars. I seem to recall their moonlight and candlelight ceremony where they’re hanging out in togas by a graceful statue, with a harp. Ruth goes on to have a lot of adventures that center around her solving mysteries, helping poor girls get an education. Her companions include the jolly and popular plump girl, Jennie; and the slightly bitter lame girl, Mercy, as well as a rich friend with a cute brother and a motorcar. Nothing new there, right? But…

Ruth Fielding book cover

The cool thing about Ruth Fielding is that she’s a scriptwriter for moving pictures! She saves her school when a building burns down by writing a moving picture scenario for Mr. Hamilton from the Aelectron Corporation! And goes on to become a successful writer, even transitioning from silent film to the talkies.

Note the fashion in the cover picture. It reminds me of the book from the Betsy-Tacy series where Betsy and the other girls try to look like Gibson Girls, with their dresses gracefully draped instead of being tightly fitted, and a “droop” to their figure, slouching rather than standing up straight.

I believe this might be the series where all the girls make graduation dresses from simple white cheesecloth so that the poor girls won’t feel outshone by rich girl satin and lace. Or is that Rebecca of Sunnybrook Farm? There was an amazingly cunning plan for their class valedictorian, Mercy the lame girl, to be able to graduate on stage by the clever and unprecedented use of a podium or a sort of Grecian drapery on a dais. Because it would be impossible for her to graduate on crutches despite her being the damn valedictorian on crutches! Mercy had a sharp temper because of her pain and illness and difference, and all the other girls take that into stride. She wasn’t cured magically like Katy and Pollyanna and she didn’t develop perfect patience; she stays crippled and a little bit bitchy. She’s my hero!

Alice B. Emerson was a pseudonym used by the Stratemeyer Syndicate. Known authors who wrote Ruth Fielding books include Mildred Wirt Benson, W. Bert Foster, and Elizabeth M. Duffield Ward. Thanks to Jennifer at Series Books for Girls blog, which I’ve only just now found while searching for anyone… anyone… on the net who is also obsessed with this stuff!

Click through for my re-read and chapter by chapter summary of Ruth Fielding of the Red Mill in all its glorious faily goodness. Or, you can read the full text here from Project Gutenberg. Summary: The miser has a heart of gold; the crippled girl walks again; Ruth wins the spelling bee and gets a new dress; there is a lone page where a Mammy and a young black girl make cameo appearances. The young black girl does not get to go to school or make any friends or get any dresses…

(more…)

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Save Lori’s House

Last fall I was diagnosed with a rare form of slow-developing ALS, as the explanation for my “bad leg” that lands me in a wheelchair or on crutches at times. A few months later I was “undiagnosed”. Freelance writer Lori Steele was diagnosed right around the same time. Her ALS has progressed rapidly. She and her 7 year old son may lose their house, which has just gone into foreclosure. Her blogging friends are trying to save Lori and her family from an enormous pile of medical bills:

http://diaryofamother.blogs.com/mamas_musings/2008/09/save-loris-hous.html

Could have been me… could have been you… Let’s try to spread the word and help Lori out with some donations and bigger media coverage.

It’s not right – and I don’t mean just that she is battling with ALS – It’s not right that this is what happens to a hardworking and successful single mom, because she doesn’t have insurance and our medical system sucks. Medical crisis? THERE IS NO SAFETY NET. Instead, it is right when you’re the most down and in need of help that rich people; doctors, bankers, etc. will kick you when you’re down and pull your hard-won middle class life to pieces, kick your family out into the street, and leave them crushed by debt.

Interesting that Lori copy-edited Michael Moore’s book. Where is he to help her in this crisis? Hey Michael Moore could you at least throw a little publicity Lori’s way ?

Lori wrote this about the aftermath of watching “Bambi” with her son, just this summer:

He had tried to shield me from the sadness of knowing that Bambi’s mother was dead. And now it was my turn.

“Will you look after me when I’m a grown-up?”

On the morning after his fourth birthday, Jack waits for an answer. There’s so much that can happen in this beautiful, crazy, too-mortal planet, and I know truth and its consequences are too much for a child. For my child. For this moment. He will learn the whole truth in time; he will learn that life is as capricious as it is constant. For now I want him to return safely to Neverland.

I tell him I’ll always be here for him, one way or another. Always always always. Just like my mother is here for me. Just like I was there when he was 3. It is an impossible promise, a gamble with his trust. I secretly pray I don’t let him down, not on this.

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Hurricane, vote caging, leg failure

Here’s what’s on my mind today:

*Projected path of Hurricane Ike
* another map from the City of Houston
* http://blogs.chron.com/sciguy/archives/2008/09/ike_now_likely.html

Michigan Republicans being super damned sleazy, underhanded, Lose your house, lose your vote working to delay voters, disenfranchise people under threat of losing their homes

My family in general, my mom’s dad is in the hospital, she is flying out there (out of Houston, tomorrow morning, right in middle of the evacuation) to go to him, and I wish she wouldn’t on about a million levels

Slipped today, from weeks of mostly walking on crutches about a 4.0 – 6.0, back down to a 6.5 which is a major difference for me. It means I need a bathtub rail, I have a hard time picking stuff up off the floor, I can’t really walk around even the bedroom without both crutches. Compared to walking around the house and the office pretty freely without even a cane. Fingers crossed it is just a little blip and I will be frisky again tomorrow morning. I just walked all through the grocery store and felt super happy, though achey from it, and then… bang, half an hour later got up from bed and fell forward to grab the door and hold myself up in a giant panic till Rook brought me the crutches. If it lasts then I will have a harder time. I’m so grateful for my good, lightweight, awesome wheelchair.

It was back to school night, all pretty interesting; I took notes and will blog it later on badgermama.

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Foolish overuse of those leg-like objects

And maybe of the hand-parts too. Oh well. I know! I’ll lie around typing some more!! SMRT.

Today was fabulous, I enjoyed the programming stuff for work and all my co-workers, crept out for lunch with Minnie & persuaded notcalm to come with us to hang in my back yard with my baby nephew. Mr. Pants does indeed love to fix a bicycle with whatever tools come to hand. He picks up a spoon or whatever, and studies the bicycle. Then he carefully touches the bicycle all over with the tool. He’s so awesome! Minnie and I devoured our fried chicken from Betty’s.

face washing while playing with tripod

We gossiped mightily. I think my favorite part of the conversation was an unprintable statement from one of the three of us about people we know who might expect to have sex with other people we know, two weeks after a c-section. I mimed the hand gesture of leg-parting and a quizzical glance to see if all was well in there before diving in. Ahahaahh! We discussed some of the details of the first 6 weeks of life after giving birth. That’s all I’m at liberty to say. I also realized at lunch that Minnie would understand all the bits of things I’m doing at work and would likely have good advice.

I thought I would use my newly affirmed powers of dashing and sprinting to hobble into Savers and get Moomin a jacket. Uhhh maybe that was too much. Got jackets though. Then was passing grocery outlet and thought “Oh, I can walk so well, I’ll get a soda!” and bought some soda and juice but was totally falling over and regretting that I ever got out of bed. Uhhhhh! Whoops! And so to work. I had that moment of trying not to whimper out loud, wanting to lie down and cry, and then was able to just push it aside. Sometimes concentration is really useful. I got to the point in the last few days where I “know” where I am geographically while poking around in directories on three different servers, four if you count my laptop as one of them since i have stuff on it too, and weird bits of code everywhere. So, our thing works! It was wildly exciting to push the button and see all the directories and the bits of code magically appear! I wish I had time to go understand what J. did in the back end of drupal with the hook, or action, or whatever, which looks like a sort of skeleton of it doing something & then some extra php. I did not read it but stuck to my little bits and then to messing with the javascript parts. J. fixed the IE problem by breaking it all up into bits and nesting the html and the js. It was extremely clever.

I then hauled ass to go pick up moomin at camp. i sent him back in to pay for the after care realizing i needed to cut the walking attempts. ohhhhh. warning sign number MILLION that I completely ignored. Then, back to my work (10 min away in traffic) and i thought, Oh, well, maybe i could send him in for my phone (which i forgot and realized must ahve fallen into the couch cushions.) I can get the wireless from the parking lot… and notcalm sent my phone down with hedonia. I thought moomin woudl balk at being sent in, but he liked the idea. (Warning sign number 2 million, i knew i could not walk up to the office again) Then home!

Where I then tottered about the yard a little because it was nice out! And then made snacks and dinner for 3 children and then a giant salad (mostly sitting down b/c i was losing it then) for me and rook and zond-7! and then washed the dishes and realized I was going to FUCKING DIE

Took celebrex, cursed self a bit, laid down, successfully disappeared into Zond-7′s python (django) and twill and sql stuff which was totally fascinating (and i was helpful i think) Now I can’t wait to make some nifty tests with twill! omg! handy! I pushed past the whole “lie there and cry and whimper” moment again and had a nice time. But, I admitted it was bad and started asking for help to get stuff, open the windows, etc. My hands are in a lot of pain too. i wonder if it is from the attempts at digging and gardening? Or from the excessive leaning on crutches, so much harder than wheeling?

I really love my life. I was reading the bit in the Ben Franklin biography where it describes how all his life he loved to live in a household that was lively with swarms of children and bustling domesticity. I don’t know about all my life…. heh… I’d hate that. I’d hate to have to do it all the time. But I really enjoy the moments when the house is full of people and I have just fed them, or given them all scissors and tape or a rake and a mission, and the kids are swirling about underfoot, emitting strange kid-rays. colliding with reality in all different ways, glowing with excitement.

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The ocean bottom is in my garden. Also I can walk

garden

I am crutching in to work every day now and walking pretty well. My right leg gets very tired and my foot goes numb and tingly and painful the more I walk. But it is NOTHING to what it used to be. I’m really happy about that and about the level of walking I’m at. I can put down the crutches and walk around the garden or the house for maybe 15 or 20 minutes. Maybe it’s more like 10. I have not measured. Also I am more confident going through a grocery store just holding onto a cart. I feel firmly in rehab-land and not in the “grimly forcing myself to walk a couple of steps” zone. Let us assign numbers by the Kurtzke Expanded Disability Scale! I think I am at 4.5 – 6.5. That’s huge improvement! It’s been like that for a couple of months. My leg has not completely collapsed under me for … I don’t know… a bit longer than that.

I still have a hard time with the bathroom being far away and with trying to work up the energy to go out to lunch. It’s a long way out to the bathroom and down to the car, on crutches. All I can say is I sit there trying to hold it and then realize that if I sneeze, all is lost, so I’d better get up.

One of the things slowing my rehab is that my left knee is crap. So, it gets strained easily. I do my exercise-bike stuff now and then to try and strengthen it.

I feel like I could probably ride my bike if I got it out, but I’m scared to try and hurt myself and backslide. So, not yet.

Today in the garden I dug in the brick-lined area under the cedars and salvias. At about 4 inches I hit hardpan and for a while began to doubt myself. Was there a brick patio under there? But no – it was just the red, rock-hard decay of serpentinite. I sat there chipping away at the old metamorphosed, messed-up ocean bottom. Go read the article about serpentinite. Isn’t the word “ultramafic” nifty? It’s a silicate that has a lot of magnesium and iron (Ma + Fe, thus the “ma- f” of mafic). What, did you forget I worked in a geology library for like 5 years and read all the time?

You can see the greenness of the serpentinite in the photo above – and the way it’s surrounded by the strange, nutrient-deficient red soil that it decays into. It needs nitrogen and phosphorus really bad, and, well, just everything. That’s why I’m going to mulch the hell out of it and fill it with kitchen scraps! Here they are! Slimy old mac & cheese, strawberry tops, coffee grounds, and apple cores!

garden

and here’s me very happily holding up my joby/gorillapod tripod thing, which I now passionately love!

garden

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Action movie preview rant; racism in Indiana Jones

I went to my friend’s steampunk beach wedding with Rook and Zond-7 and all and sundry!

there is no charge for awesome

Aren’t they cute as hell?

Held a giant chiton (described in post below, but here’s the photo to show how huge it was!)

Went to RoboGames! Drove all over hell and back! Drove to Oakland and hung out with Minnie and Moomin and small Mr. Screamypants!

I saw the Indiana Jones movie, loving it and hating it. I was steeling myself for an inevitable ancient-Harrison-Ford romance with a plucky yet needing to be rescued 24 year old actress, and indeed the movie had all the pain of Smurfette Syndrome, ie, a bunch of male characters of varying kinds and one plucky girl. BUT…. it had the saving grace of having TWO female characters. The plucky girl was older than one would expect from craptastic sexist ageist Hollywood, like actually old enough to have a young adult son, and old enough for it not to be completely stereotypically annoyingly prize-like for her to be involved with Indiana Jones. And she got to kick ass some of the time. The other female character was the totally awesome Evil Psychic Communist in uniform complete with shiny black gloves and obsession with aliens and mind control. She was okay.

There was a really stupid and unnecessary racist bit with the …. clay-covered “naked savages” springing out of the masonry to defend the temple. Why, why, why? Why was that necessary? “Insert mob of non-white naked howling irrational people here.” What??? Why?! Covered in MUD! Wearing GRASS SKIRTS! HOWLING! I believe even ULULATING! Inexplicably kept alive for 5000 years! Fanatically DEVOTED! Mayan, yet Peruvian, yet grass skirt wearing yet wielding BOLAS! Then awe-struck, and bowing to the Artifact! Arrrgh. Rook and I sat there groaning and scoffing. Come on! More skulls, giant insects, sword fights, stone mechanisms rolling shut just a hair too late, waterfalls, yes, Racist Crap no. Anyway!

The pulp-like “ooo mayans” and “ooo nazca lines” and “ooo now we’re in the amazon” was just funny and overblown. I didn’t even get annoyed by it like I did with the weird stuff in Emperor’s New Groove. It was so bad it was hilarious. Same with the “magnetism”!

Back to the villain – I enjoyed the bit where

SPOILER!!!!!

She was going, “I WANT TO KNOW” and staring at the alien skeleton and the aliens began to beam stuff into her head! Yay! I wanted her to know! Go, Hero of the Order of Lenin! Go, psychic scientist crazy woman! My higher level analysis was that her gender was being conflated with communism and the “hive mind” of the aliens. Manliness was the independent thought and maverick status of Indiana Jones and his little rebel boy sidekick. The communist villain spoke at length about her evil plot, which was to gain enormous psychic powers so that everyone in the world’s thoughts would be like hers, they would be taught right thinking, but they wouldn’t know it wasn’t their thoughts. They’d think they were having their own ideas – but it would be communist mind control. Then, she ended up marvelling at the beauty of the alien hive mind, and merging orgasmically with it and squirting up into an interdimensional portal. You can see why I cheered. I don’t think I was meant to and instead it was meant to be punishment or comeuppance and a fit ending. I think also the idea of women in authority, in positions of equality and authority, in communist countries, was mixed up with current (and past) anxieties about feminism, PC-ness, and women’s rights, so that woman in authority = hive mind = evil.

Onward and backward to the previews!

The movie previews promised to be good since they would be action movies. I’m a HUGE sucker for explosions, chases, fights, and other action movie bullshit. Add space battles and I’m extra happy. So, no horrible “romantic comedy” previews I had to suffer through. Instead I got to admire the explosions, while bitching about the Smurfette Syndrome about 5 times in a row. “The Spirit” – Frank Miller movie, made fun of preview already, hilarious voiceover with superhero going “The city screams, she is my mother, she is my lover.” Sooo that makes you a motherfucker then? *sigh* So stupid! So annoying! So unnecessary! Then yet another movie about a Man having Important Man experiences with women as peripheral sex prizes (some movie about a guy living backwards in time. I would prefer they just LEAVE WOMEN COMPLETELY OUT, thanks but no thanks. Give explosions and battles, keep nasssty chips.) Hellboy which looked fucking awesome!!!! Awesome! Hello! Just great! But again, is man having his Man Moments because hollywood if in an action movie has to show how being a Man is all about heroism and heroism is all about being a man! I am so annoyed. I bet if the female characters have any good fighting moments of bravery it will be only because they are defending their man, or their dad, or their brother, or carrying out their father’s last wish, or some other annoying-ass thing whose subtext implies that women only exist in relation to men, especially when they kick ass. Then, Eagle Eye, which looked to be even more of the same. It is all about the profound experience of the lone man who in his lonely way has an Experience. Do I make myself clear, here? Why is this always the plot? It’s like the Joseph Campbell sexist as hell Hero’s Journey just mutated itself into every story possible.

Don’t even get me STARTED on Wall-e. FFS. I mean, I want to see a fucking awesome movie about some robots. In space. Why must it get all messed up with gender stuff? Why not just put some eyelashes and lipstick on that rescue-screamy-flirty-sexy robot girl? WTF with the robot gender roles? You know, if I were a robot, I’d think the nicest bit of would be getting to be ungendered. Like we didn’t go far enough with the movie where all the ants were heterosexual male/female couples (??) and the Bee one, and the one where the (male) cattle had udders? What?

Okay I’m glad I got that off my chest! Otherwise I had an intense few days (and nights) at work, a weekend packed with social events, I am concentrating hard on walking but it’s very hard, and Rook and I gardened a little bit, which was super nice since it’s been so neglected.

I have been noticing how my car is like my spaceship and everywhere I go is like an expensive gravity well. Some places, like the building I work in, or a grocery store, suck you into their enormous gravity well and it is hard to achieve escape velocity. For those, I need the powerful shuttlecraft of my wheelchair. For gas stations, small cafes, and places that can be traversed easily, I can achieve escape velocity handily with only the EVA jetpack of my crutches or cane. You think I am joking about imagining that those annoying slow wheelchair lifts are the airlock? No… I’m really imagining it and enjoying it with a slightly embarrassed smile in case anyone can read my thoughts. I prefer the Belter lifestyle without going near those annoying gravity wells where I am way too heavy, give me the asteroids any day. What this means in practical reality is that I go to the Carl’s Jr. drive through a lot these days.

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Invertebrate rescue and the Rights of Women

Happy birthday to me! Happy birthday to me! Happy birthday to meeeeee! Eeeeeeeeeeeepc!!!!

I got a tiny cute little computer for my birthday!

And pancakes and colorful drawings, and everyone being together, and the beach, and seeing the Kung Fu Panda movie (which I wrote up briefly this morning for Body Impolitic), and some fabulous zines, and Flora Tristan‘s The Workers’ Union. (DROOOOOL, I love Flora Tristan so much! I’ve read her Peregrinations of a Pariah and her London travel journal and some of her political writing! But not this, ever. It’s amazing.)

Rook made the pancakes and had also made cookies the night before. After the movie last night we all ran around Yerba Buena Park, went to the MLK waterfall, and it was super nice (but tiring). He and Moomin were doing fake kung fu and then I think for the rest of the evening and the next day they were playing they were superpowered kung fu animals. Rook and Zond-7 and I watched the two newest Doctor Who episodes and they were JUST GREAT and very disturbing.

Today! I almost wimped out on an Expedition. Went anyway.

Went to the beach! Everything on the drive down rt. 1 stunningly beautiful. My favorite tiny beach inside the breakwater! Kids rocketing around! They built a sand castle with me & ran around like wild things. Lucked out no traffic no fog, only a bit windy! Saw many moon jellies, harbor seals sticking up their heads from the water, grebes pelicans cormorants and terns. Rolled & walked rather a long way. (I am exhausted but aside from the pain in my leg am okay, it’s more like regular exercise exhaustion, but I don’t know how much I can do tomorrow physically).

Then when we walked to the point to sit on the wall, we saw a guy surf fishing. He pulled something out of the water with a gaff, inspected it, and threw it down onto the sand. He was far enough away that it was hard to tell what it was. But… it looked like the shape of a giant gumboot chiton and I saw a flash of orange underneath. I didn’t have my crutches (having gone from the path to the wall on Zond-7′s arm) and there was no way I could get to it. “You could find out…” “I won’t know what it is!” “You could bring it to me!” “WHAT!!! Pick it UP???!!!!” I couldn’t believe it when he really picked it up and started bringing it over. I mean, this is a thing pretty much as big as a human liver and kind of the same texture. Or, like, a liver mixed with a smallish nerf football. OMG I started bouncing around and going “YAYYYYYY!!!” Guess what, it was indeed the most humonguous gumboot chiton I have ever seen. It’s my favorite kind! I saw the magnetite-tipped teeth of its radula! and they were super disgustingly creepily awesome! Anyway this thing had to be a foot long! We held it for a while and then Zond-7 was totally a hero and clambered out onto the rocks with it and dramatically threw it into as deep and rocky a spot as he could manage. I’ve never seen one at this beach and it seemed like a sort of fabulous omen for it to be my birthday and that I got to hold my favorite invertebrate.

The beach has become a mixture of sublime and boring, like that Berlioz opera.

I thought about how intensely my perceptions and experience have changed over the course of my life. When I was a kid, I loved the cold. It felt just cold, but not bad. There was an initial shock, then I welcomed the cold and felt like I was made of knives and wind. I’d breathe in the cold, or open myself up to the 50 degree sea water, and expand like the universe, jumping around, body surfing, rolling in the snow, whizzing down a hill on my flying saucer. My lips would turn blue and I’d shiver uncontrollably, and someone would make me come out of the water or into the house or car. But now, there is no way I can enjoy the cold, or even tolerate it without intense pain. I thought of times when I’ve heard people (talking to me, or others) cajoling, persuading, bullying: “Come on! It’s not so cold! You’ll get used to it!” They could say that to me now, and it wouldn’t be true. Likewise, I thought of all the old people who I grew up around, and their constant horror at how cold I must be, and how impossible it was for them to understand that I was not suffering from cold air or water or snow, to the point of complete disrespect of my reported experience. I thought of how many experiences like this there are. Not just cold or heat, but pain, the tastes of food, emotional suffering, oppression, sanity, *reality*. People change over the course of their lives, and know, or should know, that it is possible to perceive the world and experience very differently and that cold DOES feel good, and that also, cold DOES feel bad and terrible, and there is a giant spectrum of true experience. In other words, I marvel that people don’t respect others’ subjectivity or reported experience. How can they not have learned some measure of empathy, merely from the changes they’ve been through in their own lives and the different people they were and are and will be? I said some of this to Zond-7 who replied that people are alienated from their former selves, their younger selves, and instead construct narratives in which they used to be wrong, and now are right. I felt like I was seeing in greater depth how it is that people lose or never develop a sense of that respect and empathy and how related it is (or can be ) to discontinuity of identity and self hate/disrespect. I realized that “self respect” has to include all your selves across time. Zond-7 went on to talk about the evening person (who stays up too late) dissing the morning person (your future self who you are screwing up by staying up too late) so that the morning person (future you) is really angry at past you from the evening before. (Hmm, I am still thinking about that and myself and my issues with health and driving myself too hard.) We made some remarks on how lovely it would have been in a way to have these thoughts in 1789 or something when we could have written “A Treatise on the Unities and Discontinuities of Human Consciousness and the Rational Social Mind” and been studied like geniuses hundreds of years later but instead it will be like “LiveJournal entry, ho hum, 2 comments”. Hahaha! We didn’t mean it and do believe it is a million million times better to have the net and have everyone saying this sort of thing in casual asides to ferment & propagate like letters but more discoverable.

I give you a quote from Flora Tristan, from the chapter “Why I Mention Women” in The Workers’ Union, 1843, the book where she called for an international social justice movement and union to transcend existing governments:

Workers, in 1791, your fathers proclaimed the immortal declaration of the rights of man, and it is to that solemn declaration that today you owe your being free and equal men before the law. May your fathers be honored for this great work! But, proletarians, there remains for you men of 1843 a no less great work to finish. In your turn, emancipate the last slaves still remaining in French society; proclaim the rights of woman, in the same terms your fathers proclaimed yours.
“We, French proletarians, after fifty-three years of experience, recognize that we are duly enlightened and convinced that the neglect and scorn perpetrated upon the natural rights of women are the only cause of unhappiness in the world, and we have resolved to expose her sacred and inalienable rights in a solemn declaration inscribed in our charter. We wish women to be informed of our declaration, so that they will not let themselves be oppressed and degraded any more by man’s injustice and tyranny, and so that men will respect the freedom and equality they enjoy in their wives and mothers.
1. The goal of society necessarily being the common happiness of men and women, the Workers’ Union guarantees them the enjoyment of their rights as working men and women.
2. Their rights include equal admission to the Workers’ Union palaces, whether they be children, or disabled or elderly.
3. Women being man’s equal, we understand that girls will receive as rational, solid, and extensive (though different) an education in moral and professional matters as the boys.
4. As for the disabled and the elderly, in every way, the treatment will be the same for women as for men.

A footnote by the translator, Beverly Livingston, notes that Tristan had read Mary Wollstonecraft but probably not Olympe de Gouges.

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Book reviews from the past, old computer hardware

Funny but I just got mail from someone who remembered one of my first web sites from 1996 and was looking for it. I went back to check it out and it’s pretty amusing. I stuck to a list of all the books I read with short descriptions. 12 years ago, and I still sound like myself. Bookmaniac does show me that I read quite a bit more in the past and how far my habits have changed.

I started reading Starfish by Peter Watts last night, realized it was brilliant but insanely disturbing, and put it down in favor of the blah-blah exposition of CJ Cherryh’s Downbelow Station. That got me to sleep!

Yesterday in the middle of the day my leg completely conked out. I have no explanation for this, as usual. It was achey in the small of my back, but it wasn’t till I stood up that the intense hot stabby shooting pains and buzzing down the leg fired up. After I’d been walking really well all week! No fair! Then I tried to crutch into the fabric store to get “solar system project” supplies for Moomin. Aaaa! Oh well.

Then, I voted, this time not being too brave with the crutches. On Measure O, increase sales tax for supporting parks and open space, I was torn but finally voted for it because the people arguing against it included our local utter lunatic libertarian, Jerk Hickey. Every time that man opens his mouth I marvel that he ever got onto the hospital board or anything else.

Obama’s speech, y’all! How fantastic was that! The shots of the crowd & him walking through, touching everyone’s hands. Just for laughs I read freerepublic for a bit and then watched McCain’s really horrible speech where he was just phoning it in. I was reminded of the terrible moments of the roboticness of Bob Dole and I have to say, Al Gore’s total incompetence in his presidential race, slathered with makeup, smirking, and irksomely smartypantsy even to me. (Voted for him anyway.) How nice it is to have a competent demogogue on our side for once. More to the point I actually believe Obama will push like hell to shake things up in DC, and make things better for people. Please, a populist leftist…. for real…

Mostly I could not get around last night without both crutches, even across the room or to the bathroom. That really sucked! I think today is the same.

Zond-7 and I laid around and in fact worked fairly intensely. I helped out with some work stuff, php stuff, learned some vim tricks, and then we ended up talking about sf and about computers and went on a long riff of computer hardware we have known and loved and “how i got a particular computer or shell account 15 years ago and how I felt about it”. I particularly liked his description of his first hackery conference (Dutch one) where you had ethernet cables to your tent, his description of setting up the tent for practice in soho square, then the flickering tents all around, the sounds of the river nearby mixed with rumble and explosions of people playing Quake. I described the premises of Cyteen; we talked about Blindsight and Starfish some more; we commiserated over our physical ailments.

(more…)

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We interrupt this getting-better interlude to bring you pain


disabled parking spot painted over
Originally uploaded by Liz.

I grieve all over again every time I get 3 steps better and get 2 steps worse. It is a struggle to adjust to the situation.

Saturday night something just went all wrong again. I walked so much last week and pushed myself through some increasing pain, the nerve-pain feeling, figuring that I was walking so well and felt so much stronger, it was the right thing to do. I have been doing all sorts of leg and foot exercises while sitting, and leg lifts twice a day. I was even doing a few steps of staircases without cane or crutches, just hanging on to the handrail. It was a free light splendid feeling, getting up from bed whenever I liked, bustling around, being at that party *standing up talking with people*. Now I am back to struggling to deal with daily life and back on crutches to do any little thing. My right leg can’t support my weight without too much pain for me to take. Lying here in bed, I am feeling so crazed with pain. So the last 2 nights and now tonight, Vicodin. (Last night around 9? Tonight, too – I try to hold out until Moomin’s bed time for some reason.) My leg – doing that thing it does. It is like spikey things are inside the small of my back gnawing their way out and also it feels like rubber bands gone too tight and strained. It is like needle stabs and itching deep in there in my haunches, and like fire in my hip and the stripe down my thigh, my calf and ankle, and also crawling ants in my foot. Any breath of air or breeze is like being tortured with fiery ice cubes. I swear. You see how around 6pm I kind of start looking forward to that painkiller. The tylenol and advil are not cutting it.

I cried last night when i realized i could not put on my sock and had to ask for help. I know, I know, it is okay to ask for help, no one minds, and once I’m there, that’s where I am and I do adjust. The transition is very hard. A little bit of privacy and self determination about the tiny things, it is hard to put aside.

Did I fuck up? Did I go too fast? And walk too much? When I start to feel like I can do more, I feel like a fraud, and lazy, if I don’t keep trying. I can’t even know what I did, or if it was something I did or a random fluctuation. The hard part is not knowing what is going to happen. Is this going to be a minor blip I will laugh at in a couple of days? Or am I heading for a longer time of feeling like hell? If so then I will just have to manage it better than last year.

I feel ashamed, and then ashamed of feeling ashamed. You wouldn’t think any of that would go on in my head, but it does, and I can’t help writing about it.

I just slipped from a range of maybe 4.2 – 6.7, to a range of maybe 6.5 to 7.2. I can handle being worse of course but I would so rather not. Right now I shoudl have my wheelchair in the house but I am stubbornly not. BAH.

Other than that, and my underlying emotional reaction, I had a really lovely weekend. Hung out in bed with computers. Vaguely herded the local flock of children. Mostly I wrote, and read and re-read and took notes on the Marq’ssan Cycle.

And, I had an okay day at work, fooling around and setting things up for testing and pestering people. Pain was not bad till around 3pm. Tomorrow, meetings and then linux server install. I will need to lie down a good bit of time whenever I can. Must remember to bring a decent pillow. Can I do this? Am I being dumb?

I wish this had happened after my trip and not before because I really wanted to be on, and sparkly, and have fun, and talk to everyone, after last year when I just remember being a giant bitch all the time. Also, I act like I am brave about traveling, but actually, the more I do it the more I know how hard it is. But I am determined on it. I resolve to rest sometimes, and ask for help whenever I do need it instead of trying to tough it out.

Oh and this all makes me really glad that I pushed forward on my situation at my work building with parking. Somehow. Anyway, I just had to.

I got to the part in Stretto where Alexandra is broken and in bed and tormented by feeling greasy and trapped and oh, I know the feeling as do many of you. Some of the stuff about rehab seemed pretty good but other bits like how she just keeps working and doing the things the PT tells her to and it’s painful but she gets better, well, I have my doubts there! Still I did oddly feel comforted by Alexandra wheelchairing around and struggling with stairs on her island. There I was, a little, with my damage.

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DIY: Access Hacks project

For the second year in a row, I thought of the wheelchair modification and disability access projects that could and should be at Maker Faire. I’d like to make that happen next year.

At Maker Faire this year, I talked with Miguel Valenzuela, who was showing Lift Assist, a toilet lift device that can be built for $150 out of bits of PVC and junk from a hardware store, powered hydraulically from your own water system. That kind of thing costs thousands of dollars if you buy it as a medical device. If it were a DIY kit, and if it had open source plans and instructions up on the web, it could be useful to thousands of people all over the world.

So I got to thinking. Who would I even hook Miguel up with, to get his plans used? What other projects are spreading disability access devices, open source? Could things like this just be given over to an organization like Engineers Without Borders? How can they be open sourced or copylefted?

There are specific projects like Whirlwind Wheelchair International and its design for the Rough Rider chair, developed by Ralf Hotchkiss and students over many years and meant to be distributed to shops or factories or organizations in developing nations. In other words, partnership with actual manufacturers. There’s the Free Wheelchair Mission which has a kit to build wheelchairs for under $50. They seem to take donations and then ship a giant crate of wheelchair kits to somewhere in the world. Those both look great. But neither of them were for a disabled person who might want to build their own stuff.

Then I found some nifty sites like Marty’s Gearability blog, which has a DIY category for “Life with limitations and the gear that makes things work”. She has made dozens of posts on modifications she’s made for her dad, who uses a wheelchair. I especially enjoyed the how-to for a wheelchair cup holder.

I’m also somewhat familiar with Adafruit Industries and its projects like SpokePOV. What if assistive devices used something closer to this model? Rather than people patenting, and trying to sell their designs to a medical supply company, which marks it up a million times until disabled people in the U.S. can’t afford them unless they have insurance or can wait 5 years and fight a legal battle with Medicare.

I found organizations like Remap in the UK, that takes applications from individual disabled people, and hooks them up with an engineer who will build them a custom device. This I think exemplifies the well meaning but ill advised attempts to help disabled people through a “charity” model rather than through widespread empowerment. If an engineer is donating time and an invention, why not have them write up and donate the plans for whatever they are building, and post the DIY instructions for free? Then, thousands of people all over the world could build that invention for themselves.

OneSwitch, on the other hand, has the right idea. It’s a compendium of DIY electronics projects to build assistive devices. Perfect!

Meanwhile, I went looking for the latest news in open source hardware. What’s up with the Open Source Hardware License?

My own inventions for assistive devices have tended towards the creative yet slapdash use of duct tape. For example, my Duct Tape Crutch Pockets, an idea easily adaptable to small pouches for forearm crutches and canes, or to get more storage space onto your wheelchair.

My own canes and crutches that fold (with internal bungee cords) could use simple velcro closure straps to keep them folded up while they’re in my backpack or in the car. There are some ingenious ways, also, to attach canes or crutches to a wheelchair.

I have thought of, but not made, ways to extend storage space further. For example, I think that the lack of pockets in women’s clothing is a political issue. Women’s clothes are mostly designed without pockets, because of cultural pressure to look skinny, so women end up encumbered by bags and purses. If you think about how wheelchairs are made, it is interesting that they are assumed not to need storage space, cup holders, things like that. People hang little backpacks off their chairs. And there are a few custom made pouches for walkers, crutches, and wheelchairs, like this thin armrest pouch. You won’t find them in an actual wheelchair store – and rarely in a drugstore or medical supply house. Why not?

As wheelchair designs continue to evolve, I hope that manufacturers will create customizable backs and sides and seats. Nylon webbing with d-rings, sewn into the backs and under the seats of wheelchairs, would mean that custom pouches and packs could clip onto a chair. Then it would be easy to set up your chair with interchangeable bits. My laptop could go in a pouch under the seat, for example, so that it wouldn’t affect my center of gravity so drastically as it hangs off the seat back in a backpack.

I’d like to see more and more mods for chairs and canes and crutches that are just for fun. The little holes in adjustable-height, hollow metal walking canes — don’t they seem like the perfect size to stick an LED light in there?

Also, meanwhile, I had posted briefly the other day for Blogging Against Disablism Day 2008 with a list of ideas for Practical actions that will help, like smoothing out steps into a small business (ie just freaking pour some asphalt in there or build a wooden wedge even if it is not exactly to code; people do nothing, for fear of being sued, rather than spend thousands to do a to-code ramp, and I’d rather they just stuff in a slope and bolt a rail to the wall than do nothing!). After I made the list, I went looking for online instructions on how to do the things I was suggesting. What did I come up with ? Jack shit! Nothing! Nada!

So, here’s what I propose we do:

- Compile free and open source how-tos, plans, designs, etc. on Disapedia. I have made a page for DIY equipment.

- I will go and interview Hotchkiss and his class, and write up more detail on how their open source project works.

- A meeting to share access hacks and start to add to that wiki page on Disapedia.

- I’ll head up an effort to organize a really good disability/accessibility hacking booth for Maker Faire next year.

For the Access Hacks booth, I’d like to pull in:
- craft/sewing people for stuff like mobility device storage and mods with velcro and fabric
- metal working people
- electronics people (like the OneSwitch folks)
- Maybe invite Tech Shop and the Bay Area wheelchair stores to participate
- obviously, disabled crafty/makery people. I thought I could try to pull in GimpGirl and put the word out in other communities
- Flyers on how to open source your hack and make it free – license info, where to post, hook up with places like WikiHow.

This could make a super fantastic real life application for hardware/craft hacks. I would love to just hang out all weekend with a bunch of other people with disabilities and share whatever hacks we’ve already come up with. That in itself would be productive without even doing it at Maker Faire. I’d like an Access Hacks meeting around here and I wonder if people would host them elsewhere and then post tips on Disapedia. (I would like to use them rather than host a new wiki, but I’m willing to make an access hacks wiki if that’s what people would like.)

Please, leave feedback in the comments.

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