badgerbag: messy, surly, full of books

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.

Satisfying geometric construction toy

construction thingie!
Originally uploaded by Liz.

I got completely obsessed with this construction set at a party tonight. Since I love this sort of thing very much I thought it would be fun to write it down.

There are triangles, rectangles, and octagons in the round things which I'm sure have some head-cracking official blatherweirdozoid name. They were like, an octagon, surrounded by the triangles and rectangles, oh, argh, I studied it but cannot think now how to describe it properly.

The blue sticks are rectangles, the yellow are triangles, and the red are the octagons. Each stick comes in 3 different sizes. I didn't think about the relative size ratios or anything.

So here is what I did to figure out how to build things. I took the smallest triangle sticks and some round things, and tried to make the smallest possible closed shape. I could not make a triangle with them but could make either a diamond, or a diamond that was bent in half, with 4 sticks and 4 balls. Then I thought about ways to put the resulting simple shapes together. They didn't do anything super logical. You could also make pentagons but I did not go there, thinking that sticking with the simplest basic shape would be interesting.

I made a few different little 3-D shapes based off the two diamond structures, flat and bent. At some point I noticed that the blue sticks went inside the diamond.

Then I figured, what if I take the blue ones and make their simplest shape. (Which was a square.) Then, overlay or connect those two. Since the blue stick fit with the yellow in this particular way, I could build two things - one a blue and one a yellow - and they'd interlock. (It is harder than it sounds because the symmetry is not easy.) Since the blue sticks easily made a cube, I now had a good 3D structure to build on. So once I connected a yellow diamond to a blue cube, it was clear that intersecting diamond made a sort of house shape! So, on top of every blue square, build a yellow pyramid.

Right about then I changed tracks to building in the medium stick size as it seemed to have more scope for connections, so that whatever I ended up seeing as a pattern, I could expand it inward with the small sticks, or outward with the big ones.

I built the cube-and-pyramid structure in the medium stick size first, and then built the same thing in the smaller stick size, but put the smaller one into the big one during assembly, like a ship in a bottle.

Once they were both done, I planned to interconnect them. From that, surely some new internal shape would arise. So I held it in different ways and squinted and thought about distances and angles but not in any specific mathematical way.

At that point Neilfred came and said that he could tell me some really handy tips for making them interconnect but I snapped that he could not do that until after I had figured it out myself because I wanted to see what I came up with and it was really fun for me, and him telling me his way would detract from my glory. I am not sure if that came off as a joke or not... but of course it was not... and that crowd of robo-rally-taking-seriously-equinox party nerds is certainly the best around for understanding that rather than finding it repulsive.

So at that point I figured oh hell let's use the red ones. I held the inner structure at places that maximized the distance between the inner nexuses and the outer, so, offset in a particular way. That magically made it clear that there were spots - difficult to tell by what pattern - where a red one would connect. It was intensely pleasurable when I hooked up the first red stick thus suspending the inner structure inside the outer. WHAT WOULD HAPPEN - OMG.

It was completely unclear what to do next. A pattern did not leap out (as it did for building a cube or even the diamonds). I looked at where the red stick was on the outer nexus. It was at a nexus of a yellow and blue stick, very close between them - not spaced far apart. The outer shape's perimeter has some nexi that are just yellows, and some that are yellows and blues. I then looked at the other yellow-blue nexuses. (Sorry, nexi just sounds odd, I can't keep it up.) And, here is the killing part, it was incredibly hard to see which ones would *work*. The distances to the inner nexuses were not the same. I messed with it until I had put as many red bits in as I could easily see.

Oh yay, because, then when I turned it a certain way, I could see a pattern of a red star in the middle -- I did not think then to count the sides of it, but it was the staggered & directional shape of a circular saw blade. I was thinking what i would do next if I had these thingies, would be to try to build just that shape out of the red things alone, without the rest of it. And then see what if I had several of those things, or that saw-blade star shape in each of the 3 stick sizes... Oooo...

It turned out afterwards that Neilfred's handy secret tip was just to hold the pieces in different positions and squint along them and try to line up a triangle hole to a triangle hole or rectangle to rectangle... it was not a great mathematical calculation of angles or anything! That was kind of funny! Of course that was what I was doing... hahahah...

Well, it was so satisfying and relaxing that I think I should get some toys like this and keep them around for when I can't bear to be verbal anymore and need to do something different.

I enjoy the feeling of picking up an unfamiliar thing and figuring out just a part of how to master it. It is the same with board game strategies.

The one un-fun bit was that I could feel my eyesight was all funny in the way of Impending Bifocals! Moomin looked up at one point from his own construction of flowers and his name, and was impressed. I knew he would like it! And that he would enjoy the persistence of doing it. I told him to make a square, then a cube, then the house shape and repeat it. He caught on like lightning. If I could figure out the name of the toy from googling I would totally buy some! --- found it! Zome - kind of expensive though. --- What I built was a rhombic dodecahedron with another one inside it. I'm not sure what to call the spikey red shape.

Comic Book Whore & Lemon Pie

Ooooo just now a little snippet of my life driving down Highway 280 on a Friday morning having worked a couple hours and blasting the Comic Book Whore album with interruptions for wild eyed talk about worky things and the nature of inspiration and organization and the details of a digital rights thing and and its history, and ideas off that, and how to make a sort of story out of breaking news, more phone calls, then the music up again. Then an hour of work in the french bakery on Cole, with tasty salad and salmon fritatta & smooth coffee, IM with work and my sister, picking away at tasks coming in over email. Full of unspecific energy.

then driving again with the music blasting! Her/jazz by Huggy Bear, "Boy girl revolutionaries, you LIED TOOOO MEEEEEE!" and back to Comic Book Whore's lush layered noise. Luv Song, Blank Sugar, fucking brilliant. Be Just Sound too. Well, the whole album. It's hard to rank the songs! Jensen's voice is all howly and intimate and angry and tender and sometimes screechy or dreamy... I like the layers of sound & the rhythmic complexity.

Zond-7 fed me bites of lemon meringue pie at the stop lights. I accidentally bit him.

The hot hot sun, lemon pie, melty meringue with the toasted marshmallow sticky-skinned bits on top, dissolving, behind the wheel of an enormous machine, radio blasting!

You can download that album for free thanks to Jane Jensen who made it available for her fans since it's out of print.

I'm loping around the house very well & appreciating that ability to get things when I want them, pick things up off the floor, and the other day at work, going vertical and a moment of disjunction, as I was tall as a king, seeing the world all differently than in my chair. Moments of going to 1 cane (though still hanging onto people or walls, really) or venturing to the water cooler with no cane at all (unnerving). Then when it hurts - a warning sign to stop? Or to be pushed through?

Now I am on the 3FF tech grotto couch hanging out for the afternoon to work. Oh huzzah for the air conditioning. last night in my house at 10pm the thermostat still said it was 92. I had something like 4 cold showers and wet mopped the floor a few times for the fan to cool the air. The heat destroys me more than the cold does. Cold hurts more. But heat seems to make me go all limp and raggy.

Cats think laptops are robot cats

This is my new theory. Cats think that laptops are robot cats. Or sort of minimal machine-cats.

They are warm
They sit on our laps or bellies
They make a low, gentle noise
We nicely pet them all day long
We give them long strings to play with
There is often room on a human's belly for a real cat while the robot cat gets petted

If you are a cat, and stare at them long enough, the real cat might come out.

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.