A dose of morning rage

This morning on my way to work at the busy intersection near my house, I passed some firefighters holding out boots to collect spare change for "Jerry's Kids". How much do I hate this? Do these people have the faintest clue how hideous their actions are, how dehumanizing, how much they set back human rights and disability activism?

My blood boils and I wanted to stop the car, get out and scream at them. Their good intentions are no excuse for their ignorance.

Sorry but I have no patience to suffer these fools or Christopher Reeve's whole thing.

Anyone in need of some education on thse points can go read

* Jerry Lewis, Oscar-sanctioned "Humanitarian". The brilliant journalist and blogger Laura Hershey tells it!

* Jesus Christ, We're Screwed - Bad Cripple's take on Josie Byzek's take on Obama's speech to disability activists

* Ragged Edge's explanation of some of the background of activism against the Jerry Lewis Telethon and its mentality

* Jerry Lewis vs Jerry's Kids - infamous "living waterbed" statement

* Bigotry towards people with disabilities

If it’s pity we’ll get some money. I’m just giving you the facts. Pity … if you don’t want to be pitied for being a cripple in a wheelchair, don’t come out of the house.

I could go on, and on...

If you want to support people with disabilities how about keep your spare change or your Telethon donations in your pocket. Instead go support what people with disabilities actually say they want and need to have an independent life.

Like the Community Choice Act!

Which I wish the Obama administration would talk about a bit more. I agree with Bad Cripple here:

What did I get out of Obama's speech?Obama wants to cure crippled people, hence he talks about Reeve and better medical care. At no point is any mention made that most people with a disability are uninsured and cannot afford health care. When obstacles are encountered in the post ADA land of nirvana the super cripple will overcome and persevere. How does he know this? Obama's father-in-law woke up early and made sure he had time to button his shirt and still get to work on time. He even struggled to walk up the steps of his home with two canes. Some how I think this was the least of his problems. Obama's words were not inspiring stuff but damaging stereotype. As Obama spoke I wondered what happened to his support for the Community Choice Act? This surely would have helped his father-in-law. No mention of this legislation was made, legislation he now supports in theory but it is off the table when talking about health care reform. Obama did not say a word, not one, about the current rate of unemployment among people with a disability. When the ADA was passed 19 years ago the unemployment rate was 70%, today it is 66% Surely we can do better in almost two decades.

If you need any more "educating" go read Nick Dupree's blog and also bookmark Blogging Against Disablism Day from this year or past years and read them every once in a while, I promise your perspective will change.

And, a personal Fuck You from me to Jerry Lewis.

OSCON fashion, Ignite, and beyond

I had a fabulous time at OSCON! In the spirit of my notes on the geek dress code, here's an OSCON fashion report.

Glasses were definitely IN. Me and Mario G. spaced out for a long time wearing these Trip Glasses! Maybe that's why we got into such deep conversation later in the corner of the Open Source Politics session.





Ingy döt Net models his 5 pairs of sunglasses. I'm not sure if this was a particular message about redundancy in code or if it was just one of those Ingy things.



Librarian Avenger Erica had the best shoes:



But seriously, OSCON. I had a good time and talked to a lot of smart interesting people. I hung out with Denise and Mark from Dreamwidth, with Skud, with my former co-workers from Socialtext - Casey, Ingy, and Lyssa - and with Oblomovka, Yoz, Greg Elin, and a super old school Perl monger named Dave, Emma Jane, Val. I appreciated everyone's advice on consulting and on situations where one is expected to sort of provide the diversity. (Argh.) I went to all the expo hall booths talking with people and gathering up stickers to pass out at BlogHer's Geek Lab later in the week. The only full sessions I went to were Akkana Peck's Bug Fixing talk, which was really clear and good, and the open source politics panel.

Skud's keynote Standing Out in the Crowd was great. I'm still kind of absorbing some of the reactions to it from O'Reilly Radar and from Linux World News. Women in any tech field, don your best armor before wading into those threads. My feeling is that it could have been a lot worse though and maybe we've reached a tipping point where enough people understand there's some problems and have a clue what might be helpful. For me, one of the more depressing things that happens in this field is when women with about 100 times the status and skill level I have end up giving the (private) advice that while they agree with all this and still feel it, they think it is bad for one's career to mention sexism or feminism ever. In this case, hurrah, that just didn't happen (at least that I'm aware of.) However, I think it's still the case that the vast majority of women I know in my field do feel the effects of misogyny and sexism and are often enraged by it in ways difficult to express. I would like to go further out on a limb here and say that the intersections of geek fandom culture and open source/tech people combined with the ongoing discussions of race, class, gender etc, like Racefail '09 for example, have upped the level of awareness and of discourse and have really changed some people's perspectives. Not that that translated into anyone in this discussion going "Hey, how about the rather low number of African American and Latino/a folks represented in open source at this conference and others in the U.S.?"

Anyway!

I enjoyed speaking at Ignite OSCON and hearing the amazing lightning talks.



Selena Deckelmann's talk on the election in Nigeria was pretty great. As a Postgres expert she went to connect with a few IT guys in Nigeria who were scanning and analyzing the fingerprints on a large sample of ballots. Some huge percentage of them were duplicate fingerprints. After a long legal battle, Olusegun Mimiko was declared the legal winner of the election and the governor of Ondo state.

My own talk was a short version of the DIY for PWD talk I gave at ETech.

Ignite OSCON: Your Flying Jetpack

View more documents from Liz Henry.

Here's what I said, more or less:

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!

Thanks.

For a bit more burbling about OSCON and BlogHer '09, see my post on blogher.com: From OSCON to BlogHer.