badgerbag: messy, surly, full of books

My new job at you-know-freaking-where

We last left our blog at Maker Faire and just afterwards. The weekend was so lovely I wish I had written about it in the moment. Time is slipping by me like gliding through water.

I thought over my trip to Seattle some more and the travel coming up and I'll write more about that soon!

My new job is lovely but more intense than I thought it would be. CAN I STILL WRITE ABOUT THIS? Well, I will anyway! I like all the people (obviously) and it is nice to work for someone who communicates a lot and doesn't blow me off. Time will tell.... It is also scarily like, well, this is hard to describe in a way that is tactful toward everyone including myself, but I was going for this job because I thought it would be not super intense, I could keep my head down and chug away in the corner at something not too hard, but I'd do it super well, and not be too stressed. i.e. a good job for a smart person in uncertain health. And if I happened to do anything marvellous it would be just cake and appreciated extra, but i would not have to make a Cake every day. Well instead it was like, POUNCE! We are now going to extricate every last drop of your leadership-like smarty-pants glow-in-the-dark BLOOD! Holy crap! Okay then! I shall certainly try to do that for the next few weeks. But, in working, I find I am a bit more like a horse than a mule. i.e. a mule will stop and balk. A horse will sort of keep going till it breaks and collapses! A horse doesn't want to disappoint anyone! So I will adopt a sort of mule's warning, and do a ton now, but will need to do something less demanding for a bit, and will be clear on my limits. What I mean is maybe the stress of power as well as mental synthesis. I have to switch back and forth between hard thinky-things and doing something more menial, or I just burn out! And can't balance my life! This, partly because I approach with intensity, but partly, it is all much more so because of how intensely I have been processing and dealing with disability stuff.

So, on the up side, I am pleased and flattered to be seen through, and I really enjoy getting to slurp in as much information as possible very quickly and re-evaluate several times daily as info intake continues, and keep changing plans and making stuff. What I am doing is being a systems analyst for the entire organization, but not just for systems, but for people. I'm not sure what you call that. (A "consultant" who pisses everyone off, but who doesn't get to LEAVE.) That has always been my secret superpower! When I realized that was what I was gonna do for the next few weeks I kind of laughed with glee, because it's fun, but also felt rueful, like "Oh shit... BUSTED" because it's also really hard.

Wednesday I did the walkthrough/rollthrough for the upcoming conference, and a writeup, and stil did other worky things, then finally realized I ahd not eaten, drove to Atlas Cafe for a sandwich and worked on the writeup, then to Zond-7's where i collapsed into bed, then at maybe 8 or 9 we went to R.'s party where I got to talk with her about icelandic sagas and lots of other people about science fiction and politics.

I thought more about hte hack ability blog, but did not work on it too much. Maybe a couple of hours.

I wrote up a long reading-guide to Timmi's work, for Wiscon, which you should Digg and then read, here: http://digg.com/general_sciences/Plugged_In_Dystopian_Feminist_Futures_Prep_for_WisCon

Whirlwind guide to the mindblowing work of L. Timmel Duchamp, Guest of Honor for upcoming feminist science fiction convention WisCon 32. Cyborgs, women's relationships, surveillance, torture, interrogation, dystopia, weird aliens, critical thought, time travel, art, alternate histories; but above all, revolutionaries, resistance, and hope.

I have another blog/web site to set up, just volunteering... first before Hack Ability.

And, I put some finishing touches on the blog that Minnie and I are doing, Whores of Bath. It is a humorous blog about bath products and we are doing it to make money. It will soon have even more ads plastered all over it. I am particularly proud of our obnoxious, link-whoring, search-engine-honeypot, yet still freaking funny, posts on imaginary baths with nude celebrities:

* Oh, honey! My fantasy bath with Lindsey Lohan!
* My fantasy celebrity bath with Robert Downey Jr

Well, gotta go, I had a half hour nap, a bloggy interlude (this one) which soothes my soul, a role playing game for the next several hours, Zond-7 is coming over, tomorrow is Recent Changes Camp (wiki unconference! come to it! in Palo Alto!) and then will drive about like a mad thing, and end up at a BBQ, so it will be another too-long day. Sunday I will need to decompress, but also, I probably need to work! ack!

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.

Blog against Disablism: Practical actions that will help

It's Blogging Against Disablism Day 2008!

I'll try to say something on this later tonight, but here's the placeholder with a link so you can go read all the great stuff people are writing now. I gotta do some work.

***

Okay, it's later and I'm way too tired to blog. What to say? How about some advice!

Don't be assholes and make a million assumptions! Try to contain the details of your curiosity! Be polite! Think once in a while about how an experience might be if you had different abilities!

Be a little gentle with those of us who have varying ability. Sometimes I can walk better or worse than other times. Sometimes that's my fault that I'm worse, sometimes it's not; sometimes I'm better because I did something right, and other times it seems so random. So, keep your advice to yourself unless I'm asking.

Aside from thinking, and empathy, and politeness, ACT.

Is somewhere you go pointlessly inaccessible? Suggest to that business owner that they make a small improvement.

Here are some small things you could do to make a space more accessible to people with mobility issues.

* install a handrail next to steps (and ramps)
* handrail in bathroom
* smooth out that one little step at the door. don't be telling me about building it to code. just get in there with some asphalt or cement or something and make it work.
* keep narrow hallways clear of junk and boxes (I am thinking of restaurant bathrooms)
* fix bathroom locks so people with limited dexterity or in wheelchairs can close the door
* my current pet peeve: stages. rrrrrgh. steps and a rail? portable metal ramp?
* provide seating, benches, for people who have trouble standing up in lines or waiting areas
* build accessible paths through gravelly areas
* Signs, high up, with indications of where the ramps, elevators, bathrooms, exits are.

I made a Flickr group called Inaccessible! meant for people to post photos of inaccessible places that bug them. Now, ideally, we could provide location details and contact info, and resolve to email or call around to try to get that space fixed. And for events, I think it might be helpful to document inaccessible ways of organizing space, and send the photos to the event organizers.

You don't need to be disabled to join that group and post to the group. You don't need to be disabled to mention a step, or a lack of handrail, to a business owner. Or even to put a rail or two in your own house or in the house of a relative who is having trouble.

Remember, you will get old someday, and you might be needing those ramps and rails and smooth paths. By the time you need them, you might have less energy to fight for them. So ask, and build, and fight, now rather than later.

Chickens in the bathroom

jefferson state
Originally uploaded by Liz.

A funny detail from the trip back. We called a bunch of bed and breakfasts in Grants Pass rather late at night. The only one that was in business had a super nice proprietor who answered our questions and was very excited to have some business. She asked if we were okay with pets and we were excited back at the thought maybe we get to sleep in a B&B with some cats!

So we were going "Oh! Yes! Pets! We love 'em!" and she went "Oh good, because I have really.. A LOT."

Something about the way she said it made me go "Um... like .... what kind of pets do you mean?"

"Oh.. just everything. Like, I have chickens."

"Well! Chickens! Um but not in the house of course."
*pause*
"I am actually, massively allergic to chickens."

"Well, yes. Some chickens. Chicks. In the house. Just got them today, they're babies. They're um, in my bathroom. "

Deal off!

Alas, and if I weren't deadly allergic to chickens I would have liked to have seen the baby chicks and woken up to gentle peeping and a view of the Rogue River.

There is a whole Saga of our hotel-finding that night but I will skip to the part where my tire went flat overnight and I twittered it and CityMama saw my twitter and within like 15 minutes her awesome super nice brother showed up at my car! With an electric tire pump! And he pumped up the flat tire and led me to the local tire shop where they FIXED MY TIRE FOR FREE.

Just a silly crazy little babbling rambling random self-deprecation alert from a no-one girl

I would like everyone, including myself, to use less self-deprecation, in their blogs, blog titles and descriptions, posts, emails, conversation, and life in general. How are you gendering your self presentation and what survival strategy is this? Do you need it? Is it working? Are you doing it on purpose? Consider.

We can do this on purpose and reclaim patriarchal judgments on "feminine" discursive strategy and that's what's often being attempted - and we can join the "howl" and do the girlpower thing and YET... YET... YET. It doesn't always work. Out of a context of reclaiming, it is completely misinterpreted.

In many contexts it's not reclaimable, just as performative sex-positive femininity is not, because we don't have control. Rather than revaluing uncertainty, subjectivity, non-expertise, un-knowing, as we want to, we're disempowering ourselves systematically.

Here are some words and phrases to watch out for.

Irrationality
* babbling
* random
* crazy
* silly
* rambling
* ranting (see my tagline, above!)

Infantilization and belittling
* little
* girl
* girly
* mommy

Insignificance
* just ("just a random girl")
* only
* little
* silly
* tenative
* halfway

Disclaimer phrases to disavow responsibility
* I think
* Maybe
* I don't really know, but
* I'm not an expert, but
* I'm not sure,
* You're probably much better at this than I am,
* I don't really understand,

My mission:

EXTERMINATE! EXTERMINATE!

Yes, we are judged harshly as women if we DON'T use these rhetorical strategies to pre-devalue all that we say -- whether we're right or not. And we're judged more harshly if we make a positive statement and happen to be wrong. SO WHAT. Stand up and be wrong then.

Yes it's okay to say "I don't know." It should be more okay.

It's also okay to make a strong statement without qualifying it.

I'm resolving to fight this a lot harder.

We should work on both fronts. We need to be calling each other on self-deprecation. Arrogance training.

At the same time, working harder to get men to talk in a way that is less damned arrogant and sure-acting and expert-y when they don't know any more than we do. Calling them on it, being more aware of it, pointing it out in public. It's especially helpful when men call out other men on their BS-ing -- in front of women.

A combination, a balance, code-switching according to context, could work -- but won't bring down the system that rewards men for overconfident arrogance and women for self-deprecating bullshit.

What do you think? What ways do you notice other people doing this? And what ways do you note your own participation in this gendered communication system?

On the road rocking out

We started out all perky yesterday morning! It's a hazy delirium now but here it is in photos.

Then the road was long and flat or short and twisty and green and blue for a long time, like this:

and like this:

We partook of the dream-like BBQ near Mt. Shasta with the great view and the very delicious home-cooked-ish sandwiches, and Sarah's tshirt of an octopus wondering about tentacle porn is funny:

I am extremely amused and so was Cindymonkey, and we played bikini kill very loud and sang, except for mostly her singing and me headbanging because my throat is sore, and except for Sarah not so much since she was massively hung over and only able to make small meeping noises from the back seat when the screaming got too loud,


at these signs, because we did not realize before that that was the name and we were already very excited that we were driving through OLYMPIA home of krs and riot grrl things,

The hotel today is super fucking swanky with parking and a fireplace and a jacuzzi in the room and a fluffy cloudlike king size bed and here I am in the jacuzzi with Sarah:

My legs are still twitching and numb despite a short nap so I will try to sleep again before the thing tonight.

My plan is to get there super early so I can go up the stairs without people staring at me and then can recover my composure for a bit before I have to talk to anyone.

FROM BED here on the 6th floor in our hotel near Capitol Hill, I can see Mt. Rainier very faintly in the sun & distant haze.

Tonight - party in our room? We have tequila and whiskey.

Sunday - Does anyone want to drive back to San Francisco with me and my charming blog-friend bork? She can't drive, so it is just me all the way, at a somewhat slow pace, but we can be faster if I have help. (Cindymonkey has to fly back unfortunately!)

Road trip north!

Mountains that look like volcanoes, covered in snow! Lots of tantalizing roadcuts that we have whooshed past! We got on 101 at Cesar Chavez at 10am. It's 7:30 now, coming up on Eugene, Oregon. All three of us have to stop about once an hour to pee, which has been extremely pleasant; no one is impatient with anyone else's bladder. We have healthy food and chocolate from Sarah's shopping trip and yet chips, sodas, ice cream, beef jerky, ends up in our pockets.

We had lunch at Big D's BBQ/ Silva's Restaurant in South Weed, right under Mt. Shasta - sat on a deck outside in the sun & gawked at mountains & devoured the best bbq sandwiches. I highly recommend their coleslaw and potato salad. The sandwiches were on perfectly soft giant buns slathered with garlic butter, toasted, then mayo & lettuce and tomato... *drools in memory*

Everything has gone green! After the pass coming down into Oregon, no more sagebrush and scrub.

I saw some columnar basalt, a lot of mudstone and sandstone layers, something I think was a giant roadcut of ash (as it looked a lot like the painted desert and it was right before we got to Ashland), some stuff to the west that looked granitic (in how it was weathering). Maybe on the way back I'll stop and look a few times. When we pass a roadcut or some bare rock I get so excited like my cats get when they see a toy mouse.

We are pushing on to Portland tonight so that tomorrow there is only a little to do - that way we can rest.

I need that rest as I started out loping along with only a tiny bit of help from crutches. By now though I am in some pain and limping a lot. Next stop I might need the chair.

I talked with my mom and my grandma rallied a bit & is back in rehab. She was in the hospital with a possible TIA and pneumonia, then out again to rehab sort of place, then last night they couldn't wake her up and brought her back to the hospital and my mom was very upset & thought she was dying. She might be. She sounds really confused. They have had trouble feeding her. It sounds really tough. My mom is being really brave and a good advocate.

My throat is still horrible. Not scratchy but it seems very swollen. Zond-7 has a cold too and also had a root canal yesterday and was jet lagged and just ill in every way. We ordered pho and went to bed at about 9:30, whimpering with the unfairness of it all but very comforted by the soup and cosy bed. Though, a horrible awakening at 6am as his roommate's dog got into the house and for some reason shit all over the carpet by the bed so his roommate helped us take up the giant carpet (which was half-pinned underneath the bed) It turned out the dog had kind of lost control various other places so she is probably sick... From there everything went uphill as Zond-7's fever had broken and I felt perky and good. Coffee, some cheery early-morning reading of Ubik, email check & I was off to get Sarah and cindymonkey. We are enjoying each others' stories & music.

This is all a bit flat as I'm so tired now!

Earlier I was very excited because of the gorgeous mountains!

At various points in rural highway California we were all eyed in a friendly way at gas stations by cute women, definitely checked out by the check-out girls. OH HAI we are the city freaks! But in Oregon as we neared Grants Pass cindymonkey told us about this one time she was near there at a gas station bathroom and there was a giant obvious group marriage of women in old fashioned dresses giving her dirty looks. She was waiting in line for the bathroom. & one of them came out and gave her an evil-sweet smile and when cindy went in she realized the woman had covered the bathroom in poo like all over everything. (How, in one of those long dresses!?)

My plan tonight is a motel somehwere or Sarah's friend might find us a hotel. I think they all will go out drinking if we can find a motel at a truck stop with food and a Trucker Saloon, while I gracefully fall onto a motel fainting couch with Vicodin by my side.

Best Seattle Bed and Breakfast in Capitol Hill

Man I just got off the phone with some really assy bed and breakfast place in Seattle. Here is our conversation:

Me: So you have rooms Fri and Sat?
Seattle Hill House: Yes!
Me: Anything on the first floor? I'm looking at your web site...
Hill House: Why? Is it for an elderly person? We do have a first floor room.
Me: Oh, great. I can do stairs, I just want to minimize them and don't want to be on the 3rd floor or anything.
Hill House: What do you mean you can do stairs? You have to understand this is a VICTORIAN HOUSE. There are stairs to get into the front door.
Me: Yes, I can see that, I'm looking at the photos of your house on the web site.
Hill House: So, you have to understand, there are stairs to get into the house, it's a Victorian house. We have stairs.
Me: Yes... I can see the stairs and the front of the house, in the photo. The one on your web site, that I'm looking at. So what are the room rates?
Hill House: We're not some L-shaped rambler! We're a Victorian house and any B&B in this area of town is going to have STAIRS TO GET INTO THE HOUSE, and, in the house, there are also stairs.
Me: I said, I can SEE THAT. I am CRIPPLED, not BRAIN DAMAGED.
Hill House: ....
Me: ....
Hill House: Well I didn't meant to imply...
Me: ...
Hill House: So you understand, we have stairs?
Me: ....
Hill House: Well then you can see we are probably not the right place for you.
Me: Good-bye.

*heads off merrily to blog it and to review them on Yelp*

Facials! I don't mean the dirty kind!

I think I've had a facial maybe 1 other time and it was one of those deals where you go "Oh, whatever" and abandon yourself and 60 bucks to the hands of fate. Salons and day spas are such a crapshoot. You know that some strangers are going to touch you for a while and some shit's going to happen to you - but what? It is very like going to a whorehouse but for middle aged suburban ladies (as I'm sure many of you have noticed.)

So what happened to me in this huge fancy (yet cheap) new salon place in downtown Deadwood was that two women removed my socks and shoes and put me into a giant vibrating chair (see?) that also did percussion and kneading. They soaked my feet and hands. I thought the hand soaking bowls were nifty because they put smooth glass pebbles in them so your fingers don't get bored. There was painting, and dabbing, and massaging with about 6 different kinds of scrubby stuff and lotions. They did all the dabbing and pincering of cuticles and filing early on. They pointed at the autoclaving disinfecting thing to reassure me about how modern they are & that flesh eating bacteria will not rot my fingers off my bones because of their cuticular invasions. There was hot stone massage. I noted they took the hot stones out of a crockpot. The hot stones might have been the best part, but I also liked the HOT LOTION. Dang! Then, a rather elaborate french manicure which is pale pink or clear nails with white tips. I don't know how long thatall took. A long time.

I find that perhaps because language is a barrier, but perhaps also cultural difference of some kind, the Nail Salon ladies are alert to the slightest twitch and they overinterpret a bit. So, if you fidget, or scratch your nose, they assume no matter WHAT you say that you don't like what they were doing and they should switch. Alas. An exaggeration of the Curse of the Just Right, where someone is massaging you, and you say "OMG, just right, don't stop, keep doing exactly that" and they can't HELP doing it different. Also true for sex. You might have noticed this in your own life.

For the facial part I was led back into the bowels of the building where there were candles and more mysterious Stations for things to Happen and then into a small room with more candles and all sorts of big dentists' office looking machines. I was given a white cotton muumuu for purposes of neck and shoulder massage which made me feel nearly certain this would not be like my FIRST time I braved the "facial". When THAT happened oh, it was awful. If you look at my skin, which I recommend you don't, you will see I am acne-ridden, greasy, and dry-skinned all once. There are blackheads and whiteheads and sort of looming way underneath lurking incipient zits that cannot be stopped but are lined up on a zit conveyer belt waiting for their turn. So in the historic facial of days of yore, some lady whose language I did not speak *squeezed my zits* and sort of eviscerated them with a tiny post-hole digger. It was wildly painful. Afterwards my face was all raw. So anyway, THIS time was awesome. The dental machine turned out to be a high tech Vaporizer which gently puffed warm, perfect steamy air onto my face. A hot towel was wrapped around my head and then infinite strange hot faceclothings and more dabbing and scrubbing and face massage happened. IN between every stage I got hot towelled again. I lost count. First there was coarse grained scrubbing and then a towel. Then fine grained scrubbiness. Towel. Lotiony stuff. Towel. Tingly stuff. A sort of Mask thing which dried as I fell half asleep deliciously to some horrible new age flute music and a botched rendition on guitars of that one Satie piece that they always play in arty movies. Some shoulder and neck rubbing happened while I was lying there on my back with a warm fuzzy blanket over me. There was a point where there was tiny karate-chop percussive massaging all over my face, my sinuses, jaws, much better than you'd think.

So that was pretty awesome. My face does not feel or appear magically different -- the point is more the hour of face massage. I don't really care about the nail polish either (though it is rather splendid) since I will ruin it by tonight, but the good news on that front is whatever they use for polish does not asphyxiate me or them.

The bad part was they were flipping out the whole time about my crippledness (which they didn't the first time I went there! dammit!) and just could not grasp that I could walk okay. Like, I walked in. With my backpack and crutches. And they saw me walk a little without the crutches. But, they would grab onto my arms while I was walking, or try to lift me up sort of from a chair -- unbelieveable -- and I had to explain 5 times that no one had dropped me off, Yes I could drive, no I did not have a special car for handicapped people -- Yes I could work the pedals -- no, no one was coming to get me -- this from people who were looking at my feet and watching them move for an hour and a half and I repeat, who saw me walk in and walk around their salon. (My guess is that much like it was in China, Vietnam must not quite be there with popular awareness of ideas of independent living, despite some evidence to the contrary. I dealt with this as if quaaludes were my compass and anchor with a mild half-smile and eventually all the questions stopped as I dozed and sank into the awesome vibrating throne chair and let myself be buffed and squashed and oiled like a motherfucking empress of rome.

Rook drove to M4rin to pick up his mum from her spirituality Retreat & thence to the Assploratorium. They are on their way back. My plan is to feed them soup and hope to god my mom in law goes to bed early after her exhausting day. Armed with my 3 hours of hand, face, and foot massage and new age music I have another plan, which is, ANY time she brings up any crappy health thing or says anything that pisses me off I will Change the subject and ask her what her plan is for when she begins to lose mobility in her 4 story house that has stairs to get in the door, and also what she will do when she can't drive safely any more, and what her blood pressure is, and I will also regale her with stories about my mom's parents in their assisted living with expensive round the clock aides. That ought to fix her wagon. If that fails then I will remember some errands and leave for an hour or so.

I have worked on poety translator things, submitted 2 batches of poems to places, cooked, done laundry, on top of all that!

CISWY reading in Seattle, this weekend!

Liz Reading at Queer Open Mic
Originally uploaded by Liz.

I am road tripping up to Seattle this week! If you are there please come see me at this event ! I would love to see you all and would love the support. April 25, 8pm, Annex Theatre, 1100 East Pike Street.

You will hear me say the word "Lezzie" in a Texas accent. Also, I promise to wear leather pants.

Can I Sit W/You reading

Tickets are priced at $5 and $12, which means you can choose how much to donate.

Earth Day festival

useful ramp into deep gravel
Originally uploaded by Liz.

The festival was just perfect in the ways that Deadwood town festivals always are - small, well organized, lovely, full of children, with music & food & crafts & art displays & oozing with good intentions & civic pride, sponsored by C4rgill and such companies with mild creepiness. (Their "we lurve nature" brochures remind me of the PR spinmater in "The Fountain at the Center of the World".)

A band called the Banana Slugs played funk, rock, zydeco, catchy tunes with funny lyrics about the Bay and marine life. You have not lived till you have eaten some PTA chick's homemade turkey sandwich in your new pink tshirt that has a whale wrestling a giant squid, while the crowd around you roars the refrain "Estuary! Salty and fresh" and small children shake their butts on the lawn. Then everyone lined up to go in canoes, and pet some sharks and eels, and sieve mud to find the tiny worms and shells, and there was a slide show somehow connected to Al Gore's global warming thing which I did not see the slide show but apparently there was stuff about melting glaciers.

My heart sank when we drove into the blocked-off parking lot next to the cluster of low buildings. For the parking lot was gravel and all around the buildings was gravel. There were some concrete paths half buried in gravel and some wooden walkways. But, I was in for hours of trying to move around. I had not called to check about access. Still, I'm glad I went and didn't miss it.

I had some moments that were nice where I was like "yay family having fun" but, I could not get to most of the places where Rook and Moomin were, at the times they were there, because of access and crowds (for example there was no way i was going to get to pet a shark with all those people shoving me... bags in the face...people leaning on my chair... I ran over a lot of toes in that aquarium building and then just went to its sidelines in complete disgust) And, so I had a lot of those "parked" moments where you get to sort of watch other people having a nice time and you experience a sort of disabled-person compersion as you enjoy their enjoyment (which is halfway just parental enjoyment of kids doing their thing). I had a nice moment when I wheeled up onto the pier and managed it competently and wheelied over the rough patches and the wind wuthered through my hair and jacket. (Estuary! Salty and fresh!) I felt very alone-in-a-crowd.

Three separate people were especially offensive. I guess I have not been going out to unfamilar places/crowds that often, because it felt like it's been a while. One woman blessed my heart. Another one said kindly that she "just wanted me to know that she thought I was very brave". A totally scary tanning-booth possibly-drunk lady with her grown up son with her (looking like he was gonna die of embarrassment) caught my arm as I wheeled past and said "You know, it's good that you come out. You're making SUCH A DIFFERENCE" and something else I have mercifully forgotten, but it was so dripping with grossness that I sat there and stared at her with my mouth open and had no witty retort.

A lady tried to push me at one point and I could see her recognition that things were rough for me though she could not figure out why, so I went back after a while and asked the volunteers if someone might sweep the concrete walks free of gravel. That helped. And I went over the giant pit of gravel in the photo here (so tantalizingly leading to a ramp) a few times (in fact, too many times) popping wheelies with every step (step??) so that my front wheels would not sink down.

The bathroom was far, far across a sort of narrow corridor of gravel and logs and there was just no way. If I had brought both my crutches and not just one, maybe.

The nicest bit, besides Moomin petting a shark, was that we ran into my ex girlfriend Nada and her partner & their two kids! It was so, so, good to see Nada and I clutched onto her and felt like crying somehow as I had been feeling very alone in the crowd split off from everyone. Then, it turns out, I had completely forgotten that Nada's partner is a neurologist at Staffnord, a resident. I mean I knew she was something medical but have not seen her for a long time... since maybe Hurricane Katrina or so... as she was always working so I only really hung out with Nada. Well, she pretty much started banging my kneecaps right there and drool was coming out of her as she looked me up and down like she was a dog and I was a giant hunk of meat and said things like "Goddamn it I'll do your lumbar puncture myself, it's easy as pie." "Uhhh can I have a valium for that, because, terror and pain." She said the Movement D1sorders clinic had just or was just hiring a ton of awesome people and was all overhauled and I should send her all my documents and history and MRIs and junk. As she asked me questions and I tried to explain the whole crappy story it was a bit intense for me. I admitted, I ahve been avoiding going back to my neuromancer because I feel like he fucked up and misdiagnosed me, though it happens to everyone really - but mostly I dont' want to go because I just couldn't cope, emotionally, with more doctoring and tests and running around. Besides, I am getting better or at least not worse. I also confessed (at her questions) that indeed lumbar punctures have been mentioned more than once and when they do I have just not gone back because I am scared of it. She talked of the plexus and de- and re-myelination. And that, in some ways, it is not going to matter what the diagnosis is as long as it is not an immediatly terrifying one like a tumor or ALS which it isn't, and the real thing to pay attention to is, what feels better, and if I am doing better slowly, then, I am doing things right. (That is how I also feel, and I think it is true.) I felt very guilty over not going to phys therapy regularly or swimming. (So much like trying to explain to the dentist why you don't floss enough, but worse.) At one point I was really overcome with her kindness and almost cried, but I caught it. "I've tried to manage things as best I can, and mostly do, but, it's hard to manage it right, when you're in it." It was kind of her to say she understood.

I made everyone leave because of my exhaustion and having to pee. My legs were so stiff, I think from the effort of the wheelies, low back hurting a lot. I wish I could sleep, or cry and be comforted, or both. I guess I need to go back to the doctor and then go to Staffnord and start all this mess up again.

Rook fell asleep immediately when we returned. I read E. Nesbit and lay in bed doing slow leg-therapy things. We have a role playing game in half an hour, can i pull myself together to sit up and be social?

Feminist blog historical record

I have thought for a while now that it would be lovely to start keeping a historical record of feminist blogs and the feminist blogosphere. For example when we started having huge surges of discussion (like the Blow Job Wars, or the discussion of the pink/breastcancer/infantilization thing) it is notable in intellectual history.

So, I have some questions.

- When did you start finding feminist blogs?
- What were the first ones you became aware of?
- Which ones did you read, and how did you think of them? How would you describe the character of the blog, its evolution, and the evolution of your thought about it?
- Which feminist blogs are part of your regular, or sporadic, reading now?
- What were the top 10 , or top whatever, or most important, feminist blogs of 2005? What are the most important now?
- If you would like: what is a feminist blog? what makes it feminist?
- What issues are/were important on feminist blogs (and, if you can remember, when were they important)
- What controversies, surges of discussion, did you see begin/continue?
- How have feminist blogging and anti-racist blogging combined, enhanced each other, or not done well enough, in your view?
- How about forums, wikis, mailing lists?

Please answer any or all of these questions, post in comments here. Or, if you must be private, email me and I will treat it as an interview; let me know in email what name you would like me to use in the source.

I will begin writing up some history. I will try to be good about citing sources.

There are a lot of resource guides, but not a lot of history that I've seen. But, something important happened and is still happening. We are in its midst. Let's document it as best we can.

***Update***
Still thinking about all this today while I was offline. What about making it a more formal survey/interview, for people who identify themselves as feminist bloggers. I can post the survey on a wiki/blog (doesn't have to be the feminist wiki one, but maybe could be) and then people can send in their answers (by email or put them on wiki themselves.) So we could get answers from people who are readers-of-feminist-blogs and also get the bloggers to help define their own history.

Verticality, mostly

I am taxed with explaining my physical state by various friends online and offline. There is not a lot to tell. I am still going up and down in both pain and functioning. The ups are steadily further up. The downs are still down, but not so bad, and haven't been too lengthy. So, last week (or was it the week before?) I had a couple, three bad days in a row, using my wheelchair in the house, staying in bed most of the time, and barely leaving the house. I had other days, in the past few weeks, of minimal activity, but able to walk around the house for food, bathroom, doing the laundry, and driving to pick up Moomin. I had a cold for a week. So, I worked from home for two and a half weeks, figuring to save the walking energy for housework.

The "up" days were fabulous, where I could not only do all the housework, walking around the house free but felt perfectly able to do a couple of blocks on crutches.

On Sunday I drove across SF and then walked with crutches across a whole giant supermarket and half a parking lot. Then I managed to get down a sandy cliff trail (not very long, but still, would have been impossible a few months ago) with crutches and sliding on my butt. I laid on the beach. My legs were spasming horribly by that point. But, I made it back up with no functional problem, just pain. Then stairs! (You see how different this is, and how encouraging!) Then I collapsed and cried and stayed in bed, unable to get my leg to stop cramping, unable to deal even with the thought of getting in and out of the bathtub, much less any more stairs or driving. In the morning, I was mostly better, with residual pain and leg cramps. It was the cramp/pain of exhaustion much like I had last fall -- but, last fall I had that complete exhaustion even if I walked to the bathroom, I guess because of the Lyrica and Baclofen and a general downhill slide.

I am mostly still in the wheelchair for any distances over one block, or if there are hills, or if I am going into a store or a bar or an event where there might be standing-in-line or standing at all.

I give myself little challenges like, "Park and walk to the ATM without crutches". I feel a little unsteady when I come out of the car. The curb (or ramp) is hard and I want to hang onto something. In the house, I am more confident, and pop up from resting in bed to lope about. It is a good home rhythm, bed/reading/writing/working, up for 10 minutes to do things, down again, recharge, up again.

Right now I would like to be in the wheelchair around the house, but I don't want to in front of my mom-in-law because it feels like she would judge me somehow negatively. It doesn't make sense, but there it is. Most of the day, I used the chair, but I walked a lot around the office at work. I am in pain enough that I would like to get up and wash my face and get a drink. But, I am putting it off hoping the pain will be less in a little while. If I wait till I have to pee, then I can get up and do all those things in one trip and lie down again.

I'd put myself at maybe a 5 - 7 on the Kurtze Expanded Disability Status Scale, up from the really yucky time last fall when it was more like 6 - 8.3.

Have I been back to the doctor? No... I feel like I should, but I can't bear it.