Your Flying Jetpack!
At OSCON Ignite, I gave a short talk called “Your Flying Jetpack!” on the idea of hacking assistive technology. Here’s the video of the talk, the slides, and the text of what I said. Since I only had five minutes, the idea was to do a bit of rabble-rousing and get people in the open source software community thinking about assistive tech and what it might mean to them personally, even if they’re not disabled or living with impairments.
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!