I do want to give a nod to the hard work that went into projects like the AbleData DIY listings. Though many of them don’t include the actual details of how to make something, they at least have references that may help a person find the details. It must have been copyright law, or fear of it, that limited what the AbleData DIY project could do and share. The Do It Yourself listings used to be a bit more exposed, but now are only findable in a roundabout way. Here they are, all 1000+ of them:

http://www.abledata.com/abledata.cfm?pageid=113582&orgid=109086

At some point I scraped them with a bit of python, but here they are all as one page. They are easily copied, pasted, or saved as one giant document. Take a look!

Poking at a random entry, WRIST STRAP PICK.

PURPOSE: Pick for persons with contracted or amputated fingers or flaccid hand tone. Large flat and elongated plastic pick has an elastic cuff. Velcro strap adds support and adjustability. Pick can be rotated to the dorsal or ventral side of the hand. Strumming is done with arm movement. Includes drawing.
SKILLS REQUIRED: Assembly.
AUTHOR: Clark, C; Chadwick, D.
TITLE: Clinically Adapted Instruments for the Multiply Handicapped, A Sourcebook.
REF: Book: St louis; Magnamusic-Baton: p 26. NARIC CALL NUMBER: R0272. 1980.

I looked for Clinically Adapted Instruments in WorldCat, which shows that this book is in 236 libraries. Most of them are university libraries. So it is not something you would find anymore (if ever) in your public branch library. You can buy it on Amazon for 20 bucks though.

It would be awesome to get all the books like this, scan them, and put a giant wad of PDFs up somewhere. I do not mind breaking the copyright on some obscure book from 1980 and its kin. Though I could make a bit of effort to find the rights holder. This information should be as accessible and widely spread as possible!

So, still here, just very busy and not keeping up the blog very well. Instead I was writing about scooter mods on my main blog.

Hal points out there is plenty to do with your mind when your body’s not working and there’s assistive technology (and other people) to help us along the way.

People sometimes tell me right to my face that they’d rather die than use a wheelchair, a ventilator, be paralyzed, blind, or lose whatever function it is they are scared of losing, both because they can’t picture solutions to practical problems, and because they “don’t want to be a burden”. If that describes you, go read some of the information at Not Dead Yet:

It’s the ultimate form of discrimination to offer people with disabilities help to die without having offered real options to live.

In his post, Hal says,

I hope that when the time comes, I will choose life. ALS kills only motor neurons, which carry signals to the muscles. The senses are intact. And most patients retain at least some vestige of control over a few muscles, which with modern technology can offer a surprisingly effective mode of communication. Stephen Hawking, the world’s longest surviving ALS patient at over 40 years since diagnosis, is said to be able to type at ten words per minute by twitching a cheek muscle. I hope to be able to read, browse the net, and even participate in conversations by email and messaging. Voice synthesizers allow local communications, and I am making use of a free service for ALS patients which will create a synthetic model of my own natural voice, for future use. I may even still be able to write code, and my dream is to contribute to open source software projects even from within an immobile body. That will be a life very much worth living.

Right on, Hal. You’re fierce! I’m glad you’re determined to not die! Fuck that noise! It makes me proud to see your post!

Free open source speech synthesis software: FestVox I don’t know if this is useful for voice banking and SGDs, but it sounds like a good possibility for people who have ALS.

And the OneSwitch.org.uk site may also be a good resource.

Let’s not forget the totally crucial bit, politics and activism for social change, such as The Community Choice Act which would enable more people to live independently in their own homes.

Home and in a Spinal Brace

According to her story, the hospital personnel lied, withheld information from her, refused her any connection to the outside world, tried to put her on narcotics she didn’t need, and pushed her to get immediate reconstructive spine surgery. Their tactics seemed to have the goal of keeping Cortes in the hospital for a lengthy recuperation, paid for by her private insurance.

“Who will be liable if you leave here against medical advice?” a doctor asked, trying to intimidate me into obedience. “Yes, who, indeed?” I demanded to know. He fell silent, aware of the real answer. “If you leave against medical advice, your insurance will pay nothing of your bills so far, and it is in the many thousands! Your transport is medically unnecessary! We are the best qualified to operate on you! If you go to Boston, it is up to you to pay the expense, we cannot authorize it!” All lies, I would later learn.

Cortes contacted friends, community, and doctors through Twitter and her iPhone. She broke through the hospital’s paternalistic refusal to let her leave, and their lies and incompetence, by using Twitter to contact a wide community, a network of people with great resources.

I think that counts as a DIY hack. Though Cortes was not paralyzed, I think that it’s very interesting that her spinal injury factored into the hospital personnel’s attempts to take away her agency — her ability to make her own decisions. They classified her as “disabled” and thus felt free to take over her life in the name of “help”.

Instead I found myself in a meeting with her and several folks from WWI, where we talked intensely about the history of the organization, Alexandra’s thoughts on putting DIY assistive tech stuff on the net — we talked for hours. I’ll have to make several posts to zoom in on some of the ideas. Everyone I met was a total rock star.

On the way onto campus my right tire went completely flat. Luckily it was downhill all the way to the Science building. Marc started showing me how to patch a tire. I’d never done it! Bob Incerti ended up re-patching it and helping me get the tire back onto the rim. DIY is all very well but my hands hurt enough to where it was hard to get that tire popped over the rim!

The workshop itself is lovely, with huge amazing complicated looking machine tools, and prototype wheelchairs all over the place. I tried out a Rough Rider model, and then one with gears and levers to push instead of using the rims. The levers take a while to get used to, because while you can go forward or backward nice and fast, turning just a few degrees takes some subtle thought and practice with the reverse knobs. I didn’t get the hang of it and found it very hard to open a door while doing all the small adjustments in position that come naturally in a push-rim chair.

We then had our long exciting discussion. They all shared some common language and history around both independent living and rehab. Despite on and off wheelchair use since 1993 I often don’t have a clue about the world of rehab. But also, there is a cultural disconnect because that information is either not online or is online in ways that aren’t well cultivated or marked or presented, not indexed well or optimized for search engines, so it might as well be in cuneiform for all I can find it.

At our meeting Alexandra talked about her work in the 70s and onward in Rehab Engineering and Assistive Tech. She was involved with the Center for Independent Living in Berkeley, and worked on putting a lot of DIY information into the Abledata database. She has quite a huge private archive of papers and would like to get that information online and into a reliable archive that won’t go away. I suggested Google Books, or getting Google involved in some way; we talked about wikis and content management systems, grants, how to do it, taxonomies, free tagging, and so on.

One thing we didn’t mention, I’m kicking myself for not talking about: Libraries. Might it not be best to work out a donation and grant deal with a big library, but under a good Creative Commons license, and in such a way that people can take the data out and do other things with it?

Ray Grott from SFSU’s Rehabilitation Engineering Technology Project thinks that in some ways it’s good for people to reinvent the wheel, that it is empowering to take control of your environment. And that in working with people with disabilities, he sees every time that people invent nifty stuff. He made the point too that people in developing countries often need low tech solutions that are easily fixable and maintainable. He and I talked a bit about liability, and a group called Through the Looking Glass, which is an organization of parents in Berkeley who write about parenting as people with disabilities and have shared some good information about their inventions.

Bob teaches the Wheelchair Design and Fabrication class at SFSU. He was somewhat quiet in the meeting and had great points about simplifying information, instructions, how-tos, having photos, translations, and so on. But also, and I think more importantly, the difficulties of cultural translation. You can give someone a cookbook and access to Martha Stewart’s kitchen but if they don’t see some cornmeal and a piece of meat and a fire they are not going to know how to cook. So people from the U.S. have exposure to things like bicycles, and have an intuitive background in how gears work, gear ratios, what a sawhorse is good for, what electronics can do, and so on. We can’t assume that background for everyone. And yet, exposure to the ideas and images is valuable. At this point, a lot of people were answering this point by saying “Instructables does it right”.

Bob was also rightly concerned about taxonomy: say we have a bunch of information we scan and stick up on the net. Do we need to decide first what language we use to describe what’s what? Alexandra answered this by talking about tagging and crowdsourcing. The metadata would evolve with the users of the project. I agree with her and yet I think any project would need people to add or cultivate good metadata.

Aaron Weiler, who works at WWI in the production and design process and who has a background as a bike cart hacker, said quite a lot about the appropriate technology movement. I typed up everything he said as he talked, because it was awesome, and I’m going to put that in a separate post.

Keoki is WWI’s new marketing person who seems to have some plans to get their information online and connect with more communities, especially people with disabilities, the Maker and Maker Faire folks, and all sorts of creative people. He is a big fan of Instructables and wondered if their site is accessible from mobile phones.

Marc said that people in locations without much net access might still be able to get to an local internet cafe, engage with this information, and it would be exciting for people with disabilities to participate in DIY projects. He also talked a bit about the idea of universal design.

We discussed how simple inventions or strategies are fairly easy to describe in a how-to. They don’t need specifications or blueprints. More complicated bits of engineering might need exact specs, designs, 3-D CAD stuff, planned design process like the Rough Rider wheelchair has, and relationships with manufacturers. Yet there is some commonality between “the idea of gluing a chess piece onto a button”, “putting your cell phone into a cereal box as an amplifier”, and “an easily maintainable and rugged wheelchair”.

I ended up feeling like we were all talking about a similar vision and project. A central repository, managed by a trustable institution that won’t go away, with the information portable , translatable, and with room for comments and input and tagging. Phase 1 might be simply scanning rather a lot of information and sticking it up somewhere that it could be indexed by search engines. Metadata could be added and good OCR correction done on the PDFs, by people hired from a grant and/or by volunteers coordinated in the manner of open source software projects. Phase 3, probably at the same time as phase 2, would be builders and makers, trying some of the projects and posting feedback, which might just be a photo or two of the build or the result, with a paragraph of description. Phase 4 we can think of as the times people improve on an original design in their subsequent builds.

Also mentioned: Zach from Design Break; the Draper Report; a book by Galvan and Scheers; appropriate technolocy and Shumaker, ITDG technology development group; the UK group Practical Action; Stewart Brand; the WHO term “less resource to settings”; some other org’s term “LRE” or Limited Resource Environment; Peter Axelson’s “How to Use a Manual Wheelchair”; Gary Karp’s “Selecting a Wheelchair”; Gayle Weinstein’s Firefox series of storytelling and story collecting in Appalachia; the RESNA assistive tech journal; Barb Waxman and Marcia Saxton’s accessible gyn guides; the idea that maybe we need a Wiley Wheelchairs for Dummies or an O’Reilly Assistive Tech book.

Here’s the slide show:

And here’s the video. It may take a few minutes to load, and it’s all the Ignite talks, which are 5 minute each. The first talk is Jesse Vincent on hacking his Kindle to run Linux on it. The second talk, starting at about minute 8:30, is Kirrily Robert aka Skud from Infotrope, talking about Textile Hacking. My “Flying Jetpack” talk starts at minute 15:00 including the bit where I haul myself on crutches up the stairs to the stage while people throw my wheelchair up there, and then a long while of the A/V person fussing with the microphone stand to get it to my level. I managed to keep what passes for dignity and good temper during this process. Heh!I hope you enjoy my short, funny, rabble rousing speech. Here is the full text:

Hi, I’m Liz Henry. Would you like a flying jetpack? I really, really would! To get them, we’re going to need to apply DIY and open source ideas & organization to hack accessibility – and the idea of disability.

My wheelchair is a machine, a tool to get my body from one place to another. I’d like for it to be easy — and possible — for me to fix and hack. Like a bike, or a car. It’s no more complex. I want root on my own mobility.

You can easily find information on how to fix a car. even though a car is like a giant polluting killing machine. There are books, tools, manuals available. The barriers to entry are low, so lots of people start car-fixing businesses.

You can find out how to fix a bike. There’s tons of information freely circulated to the public. There are 20 million bike riders in the US. There’s little independent bike shops everywhere. It’s an industry.

But how to fix a wheelchair. 55 million disabled people are NOT feeling lucky. It’s very hard to find information on how to fix a wheelchair. Or build one. How to sew your own seat back, build lightweight interchangeable parts. Nope!

Oddly, rather than being just a tool like a bike or a car, a wheelchair, walker, even a cane, is considered a MEDICAL DEVICE. Its invention, distribution, maintenance are under the control of powerful elites.

Why should you care? Well, because YOU will likely be disabled or have significant physical impairment for around 8 years of your life. That’s the average in industrialized countries. No amount of individual power changes the systemic problems disabled people face.

How can you avoid this fate? Dick Cheney, one of the most powerful people on the planet, threw out his back and ended up in the worst vehicle ever. 50 pounds of cold steel, it might as well be a wheelbarrow. You can’t get around in that. Bang, he’s lost his independent agency.

It’s not all about wheelchairs. As coders you might think about hand functionality, dexterity. People invent stuff to help with that. Most of that info’s in out of print books, and on a couple of personal blogs. Can vanish into the mist … like a geocities page…

Why should you care now? Until you need it, you don’t care. When you do need it, you’re busy. you’re poor. and you’re in pain. No telomere-fixing nanobot is going to save you from age and impairment. Impossible utopian nanobots are why we don’t HAVE jetpacks.

Why isn’t disability hacking more popular? Two big reasons. Attitude, and socio-economic factors. Bad attitudes are: Fear of mortality. Medical experts. Expectation of charity. Isolation. Lack of information sharing.

The second factor is systemic and socioeconomic. Your impaired body makes you disabled, so you fall under the control of the medical industrial complex. Your wheelchair repair manual or voice control hack might get you sued. Might violate copyright or a patent, might ruin someone’s profit.

At some point YOU will need assistive technology. And you will want to hack it. You’ll need a DIY attitude about access. You’ll really need open source information structures and communities. Big projects, and the ability to customize things.

Here’s some cool DIY hacks. Bicycle crutch holders made from PVC pipe. I can ride a bike, I just can’t walk too well. Soda bottle prosthetic arm: a bottle, a plaster cast, and a blowdryer: cheap but it works. Crutch pockets to help carry things when your hands are full.

Here’s a great project you could join. Tactile maps, a brilliant mashup for people with visual impairments. Email them an address, they print and snail mail you a raised print map. Software and hardware people are collaborating on this.

And another, oneswitch.org, a brilliant collection of hacks with step by step instructions on building one-switch interfaces to electronic devices. Control with a finger or by puffs of air. Others: Whirlwind Wheelchair international, open prosthetics project.

People with disabilities need open source culture. But existing open source culture needs the physical inventiveness and software adaptations driven by necessity, made by people with disabilities. Everyone disabled has a cool hack or two. They *have* to. Pay attention to them.

In the future… Will you be a sad lonely person fumbling to epoxy tennis balls onto the feet of your totally World War II looking hospital walker ? The recipient of charity, pity, mass produced help, at the mercy of what elite “experts” think is good for you?

Or will you be hacking your burning man jetpack as part of a vibrant community that supports serendipity, free access to information, non hierarchical peer relationships, and a culture of invention?

What will our future be? A DIY approach to hacking ABILITY… will help everyone. We’ll invent cool shit! We’ll open sourceily collaborate our way out of nursing home prisons run by the evil medical industrial complex AND… the future will be awesome!

As an introduction to the concept of DIY assistive tech, I explained that many people with standard issue walkers put tennis balls onto the back feet of the walker. This helps the walker glide around more easily. Some walkers have wheels, yet for decades the tennis ball walker hack has persisted. How come? And what other inventions and adaptations are out there? I describe easy DIY projects achievable with materials commonly found in people’s houses or hardware stores, then slightly more complex hacks that may need several people, designs, planning, and technical skills; then bigger hacks that are to societal or global infrastructure and take organization, community, followthrough, and deep commitment.

There are a bunch of examples and links, and a very quick overview of some of the history of disability rights activism.

This was the talk description:

Wheelchairs aren’t any more complicated than bicycles, but they cost a ridiculous amount of money. They shouldn’t. Neither should other simple accessibility and mobility equipment. In the U.S., people with disabilities who need adaptive devices depend on donations, charitable agencies, insurance, and a corrupt multi-billion dollar industry that profits from limiting access to information.

With a cultural shift to a hardware DIY movement and the spread of open source hardware designs, millions of people could have global access to equipment design, so that people with disabilities, their families, and their allies can build equipment themselves, and have the information they need to maintain and repair their own stuff.

Since we can’t all do it ourselves or weld our own chairs, we also should encourage a different mindset for the industry. You can’t stand up all day at your desk, but you don’t need a doctor to prescribe you a $6000 office chair. A consumer model rather than a medical and charity model for mobility aids would treat wheelchairs simply as things that we use to help us get around, like cars, bikes, or strollers.

Small assistive devices such as reacher/grabbers, page turners and book holders, grip extenders, can be made with bits of rubber tubing, PVC pipe, and tools as simple as box cutters and duct tape. Rather than obsess over impossible levels of healthiness and longevity, we need to change people’s expectations of how they will deal with changing physical limitations. Popularizing simple designs, and a DIY attitude for mobility and accessibility gear, will encourage a culture of invention that will be especially helpful to people as they age.

You can download the DIY for PWD slides in PDF format directly, if you’d prefer.