Visiting Whirlwind Wheelchair International

Yesterday I went by San Francisco State and the Whirlwind Wheelchair International workshop to meet up with Alexandra Enders, who I know online and who has a long history in the Independent Living movement, and her friend Marc Krizack.

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.