Posts Tagged ‘disability’

Against a law to “protect” disabled people

I sent a letter tonight to a Democratic Congresswoman from Massachusetts who just proposed a law to “protect” disabled people from being represented in pornography, with the same law that forbids child pornography. Wheelchair Dancer says it very well:

Absolutely, anyone, disabled or non, should be protected from abuse. But laws that prevent people from being able to give consent are also no good. People over the age of 60 have sex, act in and consume porn. People with disabilities have sex, act in and consume porn. Not to allow people this kind of autonomy is to deny them their humanity.

And here’s my letter, short and sweet.

Hello Representative Reinstein,
I am not a huge fan of porn, or of the porn industry, or of weird fetishists. I am a 40 year old woman and a mother and a feminist, who has used a wheelchair on and off for the last 20 years. I’ll do as I please with my body and images of it. I don’t need a law to “protect” me, by forbidding me to enter into consensual agreements.
Please talk to a wider range of people with disabilities, before trying to make laws to “protect” them.
I see your good intention here, but the effect is condescending and paternalistic. And that is destructive. I fight as an activist for disability rights — including our right to be seen as fully sexual beings.
The edges of sexual freedom include many problematic situations that are exploitative.
But the solution is not to make laws that treat us as children.
I know I will likely get a form letter back. But I hope you really read this letter.

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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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Riot Grrl Nostalgia show

There was a good crowd at the Center for Sex & Culture last night last week for the riot grrl SFinX reading. Here’s my notes!

Carol Queen read an intro for Gina de Vries.

Gina wrote Curve mag’s “Hey Baby” column. In 97 she was called “jarringly precocious” by Time Magazine.
Carol (interrupting herself): I did not know that. That is AWESOME! When I was jarringly precocious Time magazine never noticed! There was a photo… gina what were you wearing in it?
Gina: Ladies Sewing Circle and Terrorist Society
Carol: How old were you?
Gina: 14
*everyone cracks up*
*more intro*

Gina: There will be cupcakes at intermission. chocolate bergamot… Homemade! I made them! *audience cheers*

Gina read a memoir piece in 2 parts. The first part was about when she was 14 and bought her leopard print mini skirt. “It was the sluttiest thing i’d ever bought.”

Her deep friendship with a very serious queer femme riot grrl, Lila. We talked about veganism, bands, racism, and pornography. (They had class differences. Lila and a lot of the other girls were richer.) Making mix tapes and trading them. Gina read “The Persistent Desire”. Traded zines with every girl I met and hundreds of others through the mail. Starstruck at meeting Kate Bornstein. The overwhelming joy of finally being taken seriously as a queer girl.

“Dykes and fags! Working together! Biphobia sucks! Transgender revolution! Fuck shit UP!” *cheers*
We were so earnest…

Melissa Gira reading from draft of Girl Out of Order … i liked best the bit about how she would work until she passed out, and the process of taking photos of cartoons on tv with a disposable camera, getting them developed at the drugstore, carefully scanning them with a sort of squeegee scanner into the huge, beige, computer at her friend’s parents’ house, then printing it out, cutting it up into bits, writing on it, and pasting it with rubber cement into a zine.

The dangers of the postal service. Sending naked photos of herself. “Parents, lock up your stamps!”

A bunch about sex. Playing out age play with her boyfriend. Pretending to be a virgin (in one of the best asides of the night Melissa added, “Of course it had only been having sex for 4 months”)

Celeste Chan – Riot Grrl was before my time but i was inspired by it, read Sassy, checked Bikini Kill albums out from the library, watched the Yo Yo gang, moved to Olympia in 2000, I imagined it all fantastic and full of fierce eyed women, like it was dyke march every day….*cheers from audience* Instead, it was like getting too close to a dream best friend. You see their flaws. Huggy Bear, Bratmobile, Bikini Kill, thrifting… loved the ethos of diy and you can do anything. It was one of the very few subcultures dealing with violence against women, homophobia, fatphobia and the masculinist nature of punk culture. Addressing competition and jealousy that women are socialized into. It was great. Bring back riot grrrl!!!!!

Zuleikha Mahmoud. Femme shark. ***FEMME SHARKS!!!!!**** yell from audience. Omar and the lesbians band. Going on tour with Mangos with Chili. *cheers*

I, like Celeste, was a little too young. Was in hard core rural Pennsylvania. It didn’t quite make it there. That was the only thing that helped me imagine another life. When I was a little kid I was a strong feminist and I didn’t have a word for it. Then I started going to the library and the librarians had a really intense stockpile of feminist books.

So now I’m writing a book about slutty muslim girls. To reflect myself and the girls I love. A novel. I could read that or, *cries of “BOTH!!!” from audience* AND, I was going to read a piece about the first pride i went to, 2005 in new york.

“Jess is on her way over… she was going to bring her bass to teach me how to play. “I’ll teach you some fingering” and then we laughed but she said she really earnestly wanted to start a band with me. I hope to god she also wants to fuck me. I ran around my apartment hiding all the mainstream shit. The beauty mags and nikes. (phone call with friend) What’s up bachaim. (Farsi for “baby, dear friend”) (explanation of girl coming over) “Text me if you lose your lesbian virginity.” “Inshallah”. God, I wanted her, as much as I wanted shoes or drugs, as much as I wanted to move out when I lived with my parents. (she comes over) “Take your shoes off this is an asian house.” Jess eats a banana. DO THEY KISS OR WHAT OMG I CAN’T WAIT you will have to read the book when Zuleikha finishes it. (Note my subtle implication that she WILL FINISH IT DAMMIT… because it rocks)
2nd story from Zuleikha. First pride march. The night before. Homophobe violence. racism. a fight. I knew the parade was corporate but wasn’t prepared to have Macy’s celebrating my gayness or whatever!
Emotional moment of a parent filming their kid in the parade proudly…

(break) (cupcakes!) A bunch of us stand around and bond on how back then we learned how to do menstrual extraction and were all ready to start smuggling RU-486.

Then me

I talked about my zines and how I started identifying with riot grrl stuff, and showed a folder of a jillion letters, April – June 94, from all over the country. Then read some bits of the Slut Manifesto, which got a lot of laughs. (omg, i must find a better home for that manifesto.) I edited out a lot of the long ranty bits, warning everyone that during edits I’d say “Rant rant rant”. I had not timed it and have no idea how long I read, am hoping not too long. I enjoyed reading it so much. It was tempting to edit the hell out of it and also go back in time and argue with myself. Still I felt a sudden wave of affection for my fierce little self of years ago. Carol asked me if I had written in in irony or not. In retrospect, sure, there was plenty of irony in there but I also meant everything.

This was the first reading I’ve done since disabled again where I felt like I had a reasonable amount of energy and verve. Now, I can pull it off even when I feel like shit and have to fake it, but it feels so great to get a little of my mojo back. whew! and to feel connected with people. I don’t think I’ve ever read to, how should i put this, such the right target audience for anything i’ve read out loud. (though the capitol punishment story at years-ago-SFinX was similar!) how nice was that!!! and my riot grrl stuff does not really get integrated with the other bits of my life, very often. (though i do feel like blogging and even working with blogher are my continuation of all that.)

Leah Lakshmi Piepzna-Samarsinha – growing up in (amherst?) – ad in the back of MRR – “I love janes addiction, i cut myself, write me” and getting a ton of letters. riot grrl wrote to her and had gone through MRR to write to every girl who had an ad. Leah was touched… parents didn’t let her out of the house… (next town over might as well have been on the moon.) Moved to NY – then was like “oh, crap, i’m really poor” also tough being mixed race punk in ny… met unsuitable guy way older – blew him off – “some guy who looked like freddy kruger at the bookstore wanted to fuck me” crazy guys breathing on you and trying line after line… 13th street squat getting busted. mystical hippie earth firsters trying to hold down a chapter in midtown manhattan where there pretty much wasn’t an ecosystem left anywhere… She was 19… admired an older 24 yr old woman who was so tough and had been living in squats for 10 years but who would not talk with her… Cops, a tank, assault rifles, it felt like us or them, 500 bodies, no matter how much we blieved in non-violent resistence… dragged off one by one… The guy was a brilliant storyteller… the way people are who have been on the street or in prison since they were kids… he was bi and assumed she was… (I forget what funny queer punk tshirt he had on but it made me laugh) took off their shirts on wall street… fucking in another squat with the guy… not really quite feeling it as sexual … though enjoyable… “like the promise of some day having a body” (I loved that description of sex)

I forget who it was (Leah?) saying something hilarious about west coast queer punk girls being all tra la about it but NYC punk girls being all like FUCK YOU I HATE WOMEN.

Nomy Lamm – old spoken word stuff from 93 – but here instead is stuff that i didn’t read in public at the time. “the ain’t” was my band and this was our song. sing with me… (we sing the bass line) … easy target… piece about living with her best friend who she was in love with. Their messy house and the junk food and fruit flies! Stuff about jealousy, about punk scene hierarchies and how could we have this movement and still have that and so many things being about conforming or conventional attractiveness. (She and another woman whose name I did not catch but who played bass did a song – Nomy played the accordion)

A whole lot of us went to Chow afterwards. I was not sure if I was at the grownup table or the butch table. we talked about Steven’s anarchist anthropologist book and i forget what all else, some about the readings, i went over and talked a bit with everybody else… I think they were going to Rebel Girl at the Rickshaw Stop.

tonight hazelbroom and I were gossipping on IM about all this and we were just listing off 90s dykey zine people and telling funny stories. I told her how I wished I had met Stephanie Kulick who I traded zines with and then later saw Mark’s page about her and realized she was likely a major kindred spirit right down to her woman symbol necklace matching my woman symbol earring which I lost in the ballerina pie fight.

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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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Garden project, week two

This week I watered the soil daily, put some coffee grounds and vegetable bits into trenches, and dug the patches of soil a bit deeper. The original spot I thought was very dead was NOT completely dead. I think last summer’s vegetables, especially the zucchini plant, lightened it up and then contributed their dead root systems into the mix. After a night’s soaking, I was able to dig it up about 5 inches down. That was a surprise! I did it sitting down with a small hand trowel. Moomin helped me out.

Here’s the place I decided to put a real compost pile. It’s right outside my door and the hose reaches easily.

Garden projects

Today I put in about an hour of light work. That might have been too much; my back and leg are hurting. Here’s what I did:

- put more kitchen scraps into the zombie patch
- Dug up and watered the brick area
- Watered everything else including the front yard
- Dead headed the giant shasta daisy bush
- dead headed the nameless other yellow flowers along the path
- dead headed the poor neglected giant red geranium bush
- swept up a bunch of leaves from under the solanum
- put some of the leaves and dead things on the compost area (will haul more later)

It was relaxing and satisfying… I’m going to enjoy this! I missed it a lot while I was too disabled to walk around much or even to squander my sitting-up time on it.

I sat in a plastic chair to do most of the work including watering. For digging around in the compost area’s dirt, I sat on the ground. I really appreciate that I am able to sit on the ground or floor and get up again without it being an enormous production, but it’s probably the riskiest part of what I did today. So I better watch it and not overdo the up and down action.

The geranium and shasta daisy are very nasty and scraggly looking from neglect, but I know that with the little bit of pruning I did today, and a few weeks of watering, they’re going to bounce right back. I’m hoping that Rook will help me and also that I can teach Moomin to like gardens and about the science of compost over the next few months. I always like the feeling of working together on the house or yard and the feeling of making and maintaining a nice space, of colonizing space and deciding how it will be as a group endeavor.

My house-mate the Acrobat trimmed his irises and told me their story. His dad’s wife (he caught himself saying ‘stepmom’ and then explained that it still made his mom furious if he says that though it is like THIRTY YEARS LATER and we digressed into the politics of families and naming) is a somewhat famous grower of irises, creating hybrids. So the Acrobat has had these irises for many years from Geekhouse where they were somewhat neglected to pots at their rental house where they dried out completely and now in the ground in our front yard for a few years where they totally thrive.

If you want some great irises then email me, come over and he will help you dig them up.

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For Global Voices: About wheelchairs and mobility

For everyone I met and spoke with at Global Voices Citizen Media Summit I would like to pass on some information about mobility, disability, and wheelchairs. I got a lot of questions about my wheelchair and a lot of compliments on how well I get around. Here is my FAQ with some answers that people might like to know.

My wheelchair is a type called an ultralight rigid frame. It weighs 17 pounds (8 kilos) and though I am not particularly strong, I can pick it up with one hand. The wheels come off just like a quick-release bike wheel. I can take off the wheels in about 10 seconds, fold the chair, and put it into a car or into the trunk of a taxi.

A standard hospital wheelchair can weight 40, 50, 60 pounds (18-28 kilos). They are often designed to be pushed by an able-bodied walking person. With a lighter weight wheelchair, more people can gain independence.

The major manufacturers of ultralights are :

Quickie (Mine is a Quickie Ti)

http://www.quickie-wheelchairs.com/

Ti-Lite

http://www.tilite.com/store/

Colours

http://www.colourswheelchair.com/

But, these wheelchairs can be extremely expensive.

Here are two international projects to spread the availability of light weight, durable, low cost wheelchairs:

is an open source project meant to help people across the world to set up entire factories or shops to produce low cost, very durable & rugged chairs.

http://www.whirlwindwheelchair.org/

Free Wheelchair Mission is a project to ship very, very cheap and maintainable wheelchair kits to every possible country.

http://www.freewheelchairmission.org/thewheelchair.html

Getting the right size of wheelchair is also important. But, given a choice between the wrong size in a light weight, and the right size that’s very heavy, I would take the lightweight chair.

Two good sources of information are Wheelchair Junkie forums, and Gimp Girl, a community for women with disabilities.

One more thing, to answer the other question that you all are asking me:

My hair is dyed with Special Effects Blue Velvet and Punky Color Plum. It’s been that color for about 10 years. About once a month I put a little bit more purple to keep it bright.

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Pastries and sidewalks in Belgium

New blog tagline, “History of Europe through sidewalk curb cuts and things available in cafes” since that is clearly what I’ll be writing about.

I expected the tunnel under the British Channel to be different somehow and momentous rather than just a tunnel you barely notice even if you’re looking. It should have some flashing orange lights and enormous stripey caution signs that go “WARNING! WARNING! YOU ARE UNDER THE MOTHERFUCKING OCEAN”. Instead I thought vague thoughts about roadsides, railway right of way and land ownership, property rights, the San Mateo flock of fire prevention goats, eminent domain, ideas of waste and use and exploitation, geology, glaciers, farming, compost, and forestry. I expected somehow that Britain even by the railway would look more cultivated than the U.S. in the sense that the land has been intensively in use for farming and permanent buildings for so long. In other words that there would be not so many vacant lots and fields that don’t seem to be growing anything or providing pasture or otherwise being used by humans to produce stuff. Once we got through the tunnel, France from the train looked a bit more like that and Belgium even more so.

I liked the train station at King’s Cross/ St. Pancras. Giant Quentin Blake cartoon on building as you pull out of the station… (or really as you pull in as it is a “welcome” message). Odd moment when train station guy came up and accosted me and began to order me around. “No… really… we’re just wandering around this mall for a couple of hours and getting lunch… if I need help I’ll find someone and ask” “NO BUT OMG YOU HAVE TO… AND… ” No actually I don’t THANKS. The hostility that comes through is amazing.

We were in first class in the train because you’re automatically put there if you are traveling in your own wheelchair. The expectation though seemed to be for me to be fairly completely unable to do anything. (Stories later.) The train was lovely and comfortable and the food was fabulous. I did feel strongly that the model of disability and being disabled is utterly broken as there were many frail older people or people traveling with small children who could have benefitted from being in first class and having help with bags, etc. when I just would like a bit more ramps and can walk up the train steps myself and even haul my wheelchair after me if need be. So again as with the broken model of AIDS education that most people got (if you are in a “high risk” category of person etc. etc rather than “if you do X then Y”) it is about identification, instead of behavior, action, immediate situational needs. So the identity politics model works for some things and situations, but for this situation, it doesn’t. The Eurostar staff was clearly trained to see “disabled person: this is what you do” but without any thought of “ask the person what they need” or “be flexible for anyone who needs it”. It is wrong and vile to be treated as a sort of pitiable sub-elite. I notice it everywhere but more here than in the U.S.

Hotel – steps, ugh – amusing punch-card plastic door key that I swear I saw described in some ancient back issue of 2600 magazine – room nice – so happy to nap – no wireless in room, extreme hardship – dinner with Zond-7′s Work People, at The Staff restobar (food fabulous, atmosphere perfect) talked of science fiction with G. who recommended the book “Godfather of the Kremlin”.

Morning, Zond-7 went off to the meeting and I tried to work from the lobby (no wireless in room) but the wireless was far too slow for me to even download my 500 emails much less do web page testing or fixing and to deal with Drupal on any level at all. I set off down Avenue (?) Louise recalling various cafes. Everywhere had a lot of stairs and I can of course do stairs but it seemed daunting to do with all my paraphrenalia and then be trapped in the gravity well and I realized that while I can get into a cafe and its stairs I cannot hang out in it all day long when bathroom is even more inaccessible and just the navigation around the cafes I looked into was multi-level as well. I went a few blocks past Zond-7′s meeting building and then realized everything was uphill; tried the cafe right next to it, which was nice but impossible to deal with; gave up and went to the office and just camped out trying to be oblivious that I was weirdly crashing this meeting that had nothing to do with me. (I did not go into the actual giant meeting but I did sit on the floor in the offices outside, ate their food and used their wireless and bathroom.) Oh well! Embarrassing! But I had to! I worked all day. Went back to hotel around 4 when I was starting to fall asleep sitting up. Oh,,, uphill up the horrible curbs and sidewalks of boring diplomaticky financial districty overpriced fashion-y clothes Brussels, it was really hell! I’m sure it’s a nice city… somewhere that I wasn’t! Napped. Read and got dressed again & Zond-7 came back & we went out to dinner at Brasserie Poelaert which was a lovely spot but not really great food. Worth it for the nice spot on the patio.

Our taxi got lost on the way there & we ended up in streets and streets of endless Antiquities and Tribal Arts and Anthropological Antiquities until I felt kind of sick to my stomach. Not like I come from anywhere that can hold its head up but, man, could you put some of Africa back where it came from maybe? OMG. Everything so reeking of wealth. The buildings I had been admiring with their amazing stone work seemed less beautiful and more signposts to colonial and capitalist horrors.

Dinner, I mostly listened and made occasional polite conversation because it was a very Worky Dinner involving what I think of as Global Foods (which I will explain again or link back to my explanation of but it is from Doris Lessing and I use it as my marker of U.N. cosmopolitan elite) and for me not being part of that world (though in my own technocrat one in parallel, in intersection, and perhaps in competition ultimately) to be there was a perturbation. So if you think of the job of that Global Foods job as being, absorption of tremendous amounts of detailed information and synthesis of it correctly and then telling people how to act, or trying to act collectively or in coalition — it is a hard job and very thinky and talky and yet it is difficult for other people to see what the hell you are actually doing. And moments like this dinner are the moments which I see as people being like conduits for information, they are points or nodes which need to intersect and people have to talk with each other. It would be lovely to quantify and analyze and people of course do. But, I feel in those situations that it is best for me to shut up as much as possible so people can get on with talking with each other. I am also vastly entertained by cosmopolitan informational tidbit exchange ie chatter about one’s favorite restaurants in various cities and tips on jet lag and how wearying Travel is but acceptable if the hotels are of the best. (All true. But nevertheless hilarious from outside of the upper class perspective.) I did explain myself and my presence a few times and had some nice conversational moments with GH and S. and the guy from Italy who explained to me about Article somethingorother which means the govt. has to consider open source software before it buys anything and how he is helping linux groups to band together formally in a way that the government can talk with. Interesting! I told R. from Germany about the way campaign contributions are public and were mashed up so you can see who on your street gave what, with google map info. (Shock and dismay!)

Tried to pack. Must get up and go to Budapest at 4am.

I forgot to say about the pastries. They were astonishingly great. Those little fruit sponge cake things soaked in liqueur, wrapped around custard, with a glazed egg yolk thing on top – was it actually a whole egg yolk? It stunned me. Well, Belgium does not know how to build a ramp, or a sidewalk, or have free wireless anyfreakingwhere, but its inner city roadways are very sensible and its food utterly rocks. (Also apparently it still knows how to loot the hell out of Africa and get rich off it, as i think of not just Antiquities but of Chocolate.)

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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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