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. In a lot of countries, people don’t have access to wheelchairs, or only know about the most common kind of hospital chair. Here are some answers to the questions that people have been asking me at the conference.

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.

Standard hospital wheelchairs can weight 40 – 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.

These chairs are used by wheelchair athletes, but you don’t need to be an athlete to benefit from an lightweight chair.

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/

These wheelchairs can be extremely expensive.

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

Whirlwind Wheelchair International 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. (Their project is controversial for many reasons; read this article for background.)

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

Getting the right size of wheelchair is 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.

Playground baseball

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!

Installing Eeebuntu on an Asus Eeepc 900

Last night I installed eeebuntu on my Eeepc 900. You see how I love this little beast!

The instructions and forums on eeebuntu.org were helpful. I realized while I was doing the install that there’s Ubuntu Eee as well and that eeebuntu is basically just this one guy, Steve or “bezdomny”. Since he is super responsive on the forums and people report good experiences with the install, I figured it is a good bet as an OS. Ubuntu Eee also looks good!

I didn’t take good notes but here is my memory of what I had to do. I first tried to create a bootable USB stick from my Mac, but was missing syslinux so I used Oblomovka’s MacBook running Ubuntu to reformat it with parted (set 1 boot on). Then put the eeebuntu iso file on the USB stick with bezdomny’s isostick.sh script.

Then my eeepc booted from the USB stick. I hit “escape” during bootup and got a screen with 4 choices; the 4GB and 16GB drives on the eee, and two partitions on the USB stick. I chose a USB partition at random (wrong one) and then the other, which worked beautifully! It took a few minutes to boot. Wireless didn’t work, but when I plugged an ethernet cable into my Eee, I was on the net within about 15 seconds without having to configure anything.

So, I tried to follow this advice to get wireless working,

http://eeebuntu.org/forum/viewtopic.php?t=175&highlight=wireless

But then got a little bit confused because I wasn’t sure where I should install madwifi and if it would work if I rebooted from the USB. At that point I decided I’d just take a chance and install over the totally working, but annoying and ugly and Windows-like, Xandros linux install that came with my eee. (Seriously, look at this, even their web site gives me hives.) It occurred to me that I might keep Xandros on the 4GB drive and install eeebuntu on the 16GB drive, and be able to boot either one. Which, if I couldn’t get wireless working on eeebuntu, would spare me scrambling around trying to re-install Xandros. I went on IRC at irc.freenode.net and asked on #ubuntu-eeepc if anyone knew if that would work. No one answered. I got on #ubuntu-women just to feel braver but didn’t ask anything. After some more poking around forums I decided to hell with it, blow away Xandros and if I have to reinstall it, comprendo bastante este video guía para instalearlo.

So I installed on the 4GB drive. It went completely smoothly, quickly, I rebooted, hey presto magic huzzah, I had working ubuntu on my eeepc. Plugging into ethernet worked smoothly again. I got the madwifi fix with wget and installed it. It didn’t work… I re-read the thread on the forums for the millionth time. They kept saying “turn on the wireless” and finally Oblomovka and I got it that we had to turn on wireless in the BIOS. So, reboot, hit F2, looked at “Advanced” and “Devices” or something like that, it was pretty intuitive, and got a list of stuff enabled and disabled. I enabled wireless and the webcam. Rebooted, and wireless worked SO beautifully. (Not like Xandros which was incredibly clunky and failed to get me onto my own home network half the time.)

More wireless links: https://help.ubuntu.com/community/EeePC/Fixes

Next problem to fix. The mousing was crazy. Or, really, the touchpad. I don’t have a mouse, but I still think of it as “mousing”. There was a system preferences panel for mouse and display, but nothing for the touchpad. A bit more reading and I was lost… but then a bit MORE reading and google-fu and I found that going to Applications, then Add/Remove, then searching All Available applications for “touchpad” or “synaptic” would get me the control panel that I needed. That worked but during install I got a warning to change a setting in xorg.conf which I will tell you is in /etc/X11. It’s helpful to look at some examples of xorg.conf options. Then, while in vi putting in the setting, I realized my keyboard is messed up and thinks that the ” key is actually an @ sign. So I’ll have to go figure that out and fix it — I know I chose US keyboard layout — what could it be?

What I need to be able to work off this machine on my trip:

Firefox, Greasemonkey
A good chat client
vim, perl (python would be nice)
the touchpad not to be freaking crazy. Tap-to-click OFF. Who uses that! Omg! Sucks!
Not sure if I will just suck it up with email and go back to Pine, or install Thunderbird and migrate my mailboxes, or use webmail of some stripe (ugh) Currently am favoring Pine because I’m lazy; Thunderbird only if I have time to install it.

Oh also, I’m resolving to document this more formally and contribute docs-writing to eeebuntu.

** further updates later today **

How to create a web form to talk with Google Docs

My friend and co-worker Jenny from Three Kid Circus pointed out a cool feature of Google Docs to me today. I use Google Docs spreadsheets mostly as wiki-like documents for a group of people to edit a web page in table form. In other words I use them for layout of a web page, and maybe for sorting columns, and sharing fairly simple information.

In another conversation I had recently, Elisa Camahort was talking about wanting a simple widget sort of thing for party RSVPs, but that would be more than a link to her email address – it would be a form for people invited to fill out. So, it occurred to me that the form-constructing capability in Google Docs would do all the things she wanted.

As I thought further, I realized it also might be helpful to my friend Squid Rosenberg, who has a son whose educational plan is managed by a fairly large group of people, using Google Docs, tracking his progress and patterns with a daily record. Similar documents could be very useful for anyone tracking health care issues, for a team of caregivers for an elderly person, for example.

Since this is a fairly new and obscure feature, and somewhat of a convoluted process to click around to where you even understand what the feature does, I thought I’d describe how to set it up.

1) Go to Google Docs.

2) Create a spreadsheet and call it “My potluck dinner” or whatever.

3) Make columns for whatever you like — name, email, # of people you’re bringing, what kind of food you will bring to the potluck.

4) Click “share”.

5) Click “invite people to fill out a form”.

6) Click “Start editing your form”.

7) Click the Save button.

8) Click “Choose recipients”. (You don’t have to put in any actual recipients.)

9) Click “Embed”, in the upper left corner.

10) Copy the code and stick it in your blog

Each column in the spreadsheet shows up as a title and text input field in the form! You can also add new fields.

It looks like this:

From there you might have to twiddle the formatting to make it look halfway decent. It is not set up to look nice in a blog sidebar, but it looks just fine in posts or pages in TypePad, and Blogger. It doesn’t work in LiveJournal or WordPress because it uses iframes, though in WordPress you can install a widget to get iframes to work.

The resulting input into the spreadsheet looks like this:


(click image to see it bigger)

Note the timestamp, automatically added!

So, this could be useful for many purposes. My potluck dinner example is frivolous, but anyone who’s suffered through the annoying interface of the spreadsheets on Google Docs, or who uses them for individual or group data entry, could set up extremely easy web forms with this hidden-away feature.

I would like to send a polite nudge to the Docs development team to uncover the forms feature! It would be very nice if it were an option to click directly from the spreadsheet or other document.

Sonnet, twittered

Drum roll… a moment in Twitter history…

twittersonnet

Twittered by allaboutgeorge aka George Kelly, for Sarah Dopp.

The poem is better for having been twittered. I like it backwards, and getting the punchline first and then cycling back through it. The poetics of Twitter force circularity and rereading, disorder and reversal. Which goes perfectly with this poem’s theme!

Free Idea: Use ChaCha's structure for disaster relief

On the drive up to Seattle a few weeks ago, Cindy and Sarah Dopp and I were playing with ChaCha and wondering how they make money. Around here we all go “What’s your business model” right away… and then snicker.

So I think I might just have figured it out. Do it for free for a bit with your VC money and show how it works. Then, sell “Enterprise ChaCha” or something like it, to a big institution. (I was looking at Indiana University‘s page about it.) You’d sell the structure and the setup, and the institution creates its own number (and password or validation system) and pools its own experts. So, sell it to Exxon or something for its corporate librarians and geologists. Or to the military, obviously. Here is the military’s answer to its perpetual search for AI. “Human assisted search”.

Anyway, this could also work for disaster relief, because it’s ideal for situations that change very rapidly. I was looking at Jon’s empty wiki and thinking, well aside from all the problems with the whole idea of that, which I won’t go into, might a Twitter feed be better? I thought of myself on the 2nd floor of the Astrodome after Katrina, gathering and putting out information that was extremely up to date, and how quickly things changed on the ground. Would I want a wiki for it? (I tried. It is hopeless without a core of people already trained to use one and to work together with one.) Maybe I wouldn’t want one. Maybe a feed would be better. Page back through the “2nd floor astrodome” Twitter feed and see what’s up. Combine many different channels of all the people at various stations in the Astrodome and you’d know who says what is true, right in the moment.

But even better — a private setup for a ChaCha-like thing. You get 100 people together to monitor and answer questions and you would have an instant backup, fit for the general of an army. Or fit for a reporter on the ground in a rough situation. I think of how I combed google news all day long for the Back to Iraq guy back in like 2003 and emailed him updates on whatever was going on or being bombed in the area near him. How much better, if he could have called a phone number like ChaCha’s, and tapped into a network of people like me. Someone would have texted him back the information he wanted within minutes. And if there were sort of a combination of Ning and ChaCha, you’d be able to set up your own information broker network and invite people to join it.

The Red Cross should be using this (okay, maybe in 20 years if they can get it together that fast). But, I offer the idea up to whatever nonprofits or disaster relief workers can use it.

WordPress plugin idea – blikify

So I was at Recent Changes Camp this weekend talking smack about blikis with some people. And I told anyone who would listen about the plugins for WordPress that help you integrate your blog with Mediawiki or other wikis.

What about a plugin that would just let you designate any page or post as world-editable?

Add Markdown and your WordPress blog could be easily wikified. I could use this for my nascent Hack Ability blog, and it would make me (and readers, and other editors) a lot happier than setting up and maintaining a whole parallel wiki structure to go with the blog.

On #wordpress I was just talking with _ck_ who wrote a Wiki Post plugin for bbPress.

_ck_ also pointed me to this cool and hilarious video of andiacts and Selena discussing when to use Drupal and when to use WordPress:


“It’s so cool! It’s like a new solar system!” That made me laugh so hard.

I have never written a WP Plugin but this seems possibly within the scope of my coding ability. So maybe this summer I’ll give it a shot.

But, if anyone out there wants to write it, go ahead, take the idea and run. Just hat tip me when you do. And, I would be motivated to help and contribute, because it would be handy as hell.

Ubuntu "Girlfriend Experiment" PHAIL

Ugh… I really get pissed at the basic idea of “we can see how usable Ubuntu is by testing it on our girlfriends.” Assumption: “We” are male; “our” girlfriends are ignorant of technical matters. And are stupid. Femininity here is equated with non-technical status. This is not only untrue, it is a really poisonous idea to spread.

http://contentconsumer.com/2008/04/27/is-ubuntu-useable-enough-for-my-girlfriend/

First task: Tell me what the capital of Bosnia is. Second task: watch a video on YouTube Third task: Download a Spice Girls album.

Uhhh WTF with the Spice Girls? Care to infantalize women’s use on the internet any more?

How about finding some RECIPES too?

All of this just yanks my chain big time, like when people say in talks and demos, “It’s so easy, my MOM can do it.” (And then everyone in the audience laughs knowingly.) Like moms are the dumbest people ever. My pet peeve at technical conferences. I am a mom!

I am also a girlfriend!

I am also technically competent and don’t enjoy condescension!

Test Linux on your ignorant dad, next time, or your poker buddy. Be sure to have him download crap about the Backstreet Boys and other overly gendered BS.

Hundreds of women on the linuxchix mailing list are rolling their eyes in unison.

WAIT I’m so confused, maybe if they made the Ubuntu background pink?!?

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? Who’s collecting that information? Certainly not the U.N. committees on disability – ha!

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 and the elegant, blindingly useful offset hinges to widen doorways.

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.

Here’s another data-sucking black hole of information that should be out there on the beautiful, wild, free internet: academia. This paper on bamboo wheelchair designs is probably super great, but who knows? Only the libraries who have the bound copy of the conference proceedings of the 5th international bamboo conference back in 2002. This makes me very, very sad. 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 Disape
dia.

– 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.

Reading in Seattle this Friday, Apr 25


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. There will be bubbling, and silliness, and insane talk of poems and roadside geology and the roots of the Klamath Mountains. I will pop a wheelie for you and you may pat me on the head and tell me I am brave (JUST KIDDING about the patting).

I will not have my child with me, but you can bring yours, as long as you keep them out of the bar area and don’t mind them hearing some intense stories of playground bullies and maybe some cussing, plus you realize my story is about being queer, queer, queer. All the stories are AMAZING and are written about elementary school and early middle school experiences & with that audience in mind!

Get info & buy tickets here: Can I Sit W/You reading

Tickets are priced at $5 and $12, which means you can choose how much to donate. Money all goes to my hometown Special Ed PTA.

Code that isn't at all poetry, but that is structure & patterns

Happy Poetry Month! Rather than poeting, for the past few days I’ve been twiddling with code. It is much the same state of mind as translating, or basic composition, but for me at least, not quite poetry. It does require moving a bunch of words around, arranging them, and imagining their interpretation, organizing words in order to have an effect. For poetry or composition, an effect on a listener/reader, so you are imagining a logical and emotional state and the interpretation and effect of a person. For code obviously you are writing so that a machine will follow your orders perfectly; but less obviously you are writing for yourself in the future and for other future, human readers of your procedural pattern of thought. You are writing for your future (self or other) human, so they can modify and extend that code and put it to other uses. In other words, it has a bit in common with an oral or folk tradition. Repetition and patterns are good in poetry if you want to create structure for extension and improvisation.

So, just now I was doing some of my baby-Perl for some contract work. And the deal is, there are a bunch of users, and their accounts go through various bureaucratic steps, and through various work people and departments, some steps requiring others to happen first, for the account to become fully active. This is a fairly common situation for any institution. So, I had a Perl script that would take some command line options and then would do various things with the user and account data. As more people started realizing I could manipulate account stuff, and could generate reports, etc, they started asking me for new tasks. So, the hacky little script grew very quickly to a giant horrible tangly mess full of regular expressions that I did not understand anymore, 30 minutes after I wrote and tested them. A reg exp is a thing of beauty but it is not a joy forever. Instead, it makes my head hurt.

So I started about 4 times over this last month to rewrite that mess to make it easily understandable and extensible. I scribbled and thought on post-it notes so I could try to break down what needed to happen into chunks that I could move around & visualize, easier than in a 200 line text file.

It went kind of like this: use GetOpt::Long to tell from the command line what kind of report or change is required. Log in to several systems. Iterate over a range of account IDs in a big loop. Then do some http page getting and parsing. Then a lot of if else statements to see what command line option is turned on. Mixed in with some more tests and if elsing. Then again depending on command line option, do some other junk, write to some other web pages and outfiles. At the end of all that looping, write some more outfiles.

Ugh! You can see that any new capability meant that I had to do more page parsing and more reg exping, as well as thinking through all the logic of the whole if-else mess.

Today I suddenly realized several things. Speed doesn’t matter for this. I can set it going and let it chug away.

So, number one, for each user ID, just read in all the possible pages that have info on that account. It is only 5 web pages on 3 different systems. Read them in and parse out all their fields.

Number two, think of each account as having a state. There are 8 different bits of information that change account state, out of the 50+ possible bits of info. So, after parsing all the pages, look at the 8 pieces of information I care about, to determine the account’s state.

For things I then want to do, they fall into two categories. Reporting and state change. Reporting is easy. For changing account state, I can define for each case of one state to another; what actions it takes to change the account state. There are objects, and states, and transactions.

I have never really understood object-orientedness no matter how many times I think about it, and use and write code that is in theory, sort of object-oriented. It’s not like I get it now, but I get it more than I did.

Suddenly everything clicked into place and I understood how to write the code in a way that would be useful and elegant. I understood the root of the problem. It all fell together in a system. It looked like a pattern, like information that was beautiful. I know, it is a bunch of account data in a bureaucratic procedure. After years of being “programmer analyst” doing back end tools for university departments, I had to find beauty where I could. The “click” feeling means I look back on my month of sporadic attempts to write this program, and it looks like I was brain-deadishly trying to make something out of legos by gluing their corners together, when all the while I could have been snapping them together how they are supposed to go. But, before, I could not see the intersections.

So, just now I had the exhilarating (yet slightly shame-faced) feeling that I had just reinvented the wheel, or some basic principle of computer science that if I had any sense, I would have known from taking some classes. On the other hand, taking computer science classes doesn’t guarantee you know what you are doing or can build something that other people find useful & usable.