Tag: disability

Deconstructing Cheney's De-Inaugural Wheelchair

Posted on by Liz

When I heard that Dick Cheney had pulled a muscle and was going to be attending the inauguration in a wheelchair, I was filled with deadly fascination. How would that play out?

Would the inaugural ceremonies be even remotely accessible? Not bloody likely!

Would he self-propel, or would someone push him? Would the person pushing him be secret service, a family member, military, or a medical worker?

Would Cheney have a steel framed 70-pound hospital clunker of a wheelchair, or would it be halfway decent? My vote was for an x-frame Breezy, still cheap and easy to lay hands on, but under 40 pounds, maybe in red for its political symbolism value. Other wheelies I know were saying “No way, he’ll be in a clunker.” Even though I think that Cheney should (and WILL) go to jail for being a war criminal, I would have liked him to have a halfway decent wheelchair. Hell, I would personally have decorated it with the stars and stripes.

I imagined, and then later saw, Cheney being shovelled about from place to place behind the scenes, through freight elevators and dank back-hallways, maybe even a steam tunnel or two, carried ignominiously or bumped up backwards over some surprise steps no one thought about, and I felt a bit of schadenfreude there though I’m not proud of it. But I wondered, would anyone in power notice, a little bit more than they did before, what inaccessibility means, how excluding and alienating and humiliating it can be? Would anyone process, or whatever they were doing, with Cheney in his wheelchair, rather than leaving him to be tunnelled and elevatored and ramped while they triumphally process up and down majestic red carpeted staircases?

If you were enjoying their own moment of schadenfreude at the powerful man brought low, did you think about why wheelchair use was being brought low, was disempowering? Because it shouldn’t be.

Yes, I kind of giggled at the Dr. Evil jokes, but I also thought about them. Did you? Did you think on why they are a stereotype – how our stories have to give its villains a scar or “deformity” or a wheelchair (and a cat), using disability as a metaphor for being evil? I’m not saying don’t make the joke. I’m right in there posting the LOLcats of Blofeld-Cheney. But think next time you use the stereotype of the Evil Cripple.

I also certainly saw friends and strangers wishing permanent disability onto Cheney like it was a horrible fate, one that he deserved. I understand that is mostly just some anger talking. But this too exposes a bit of thinking in our society that people with illnesses or disabilities deserved them as a sort of punishment for wrongs or sins committed. I would like to invite people to think on that idea for a while. And think on this: why you think it might be such an awful fate for Cheney to use a wheelchair? Why is that? Do you think I have an awful fate? Do you pity me, to the extent that you would damn Cheney?

It was amazing to me, while I watched the inauguration, to see people I know from disability activism online, also Twittering and Facebook-chatting their reactions to Cheney’s de-inaugural wheelchair. Were you watching? Did you feel that strange agitation and excitement and curiosity?

What I felt was this:

How bitter, but how very expected, that the top levels of our own government, the most powerful men around, can’t pull it together to obtain a halfway decent wheelchair and decent access, for one of their own. That exposes the deep, deep ignorance in our country about access for people with disabilities, and how far we have yet to go.

(Have to add: I thought the Daily Show’s coverage of Cheney’s wheelchair was **hilarious**!! It starts at 2:32 in this video clip. He totally could have pushed it further!)



HP Magic Giveaway entries so far

Posted on by Liz

Here’s a sampling of the entries I’ve gotten, two days into the HP Magic Giveaway contest:

A bunch of folks commented on a review of the G1 Android phone. I am still wondering why there isn’t a pedometer app! But there are lots of other ones I asked for, like a simple compass and a geocaching app.

On that post, briguy992 wants me to be happy that the Android system’s background is fabulous. Most of the time yes, I agree. But when I’ve tried to kill a process I can’t! Despite how cool the G1 is, it’s not some kind of miracle device that manages its memory perfectly, or never crashes. In fact I have to restart it fairly often.
So I don’t agree with briguy992 that what I should do is “ignore that feeling it’s not ‘closed’ “. Actually, I think that’s very condescending advice! It is not like I’m just having a superstitious “feeling” like someone who can’t deal with having multiple tabs open. It’s that I’d like to be able to control my computer. Wouldn’t you rather have root on your G1 so you could screw it up thoroughly? 😉 Or go looking for some kind of kill program or task manager?

While I was looking for something like this, I did find out that holding down the home key for 5 seconds shows the 6 most recent open apps. I have a terminal window, I can type ps -x, therefore, I should be able to type kill -9 and have it work! But no. I’d also like the apps written with the option to close them! So, briguy992’s comment made me think, but also totally annoyed me, so in the spirit of this blog, I have to give him hell. That’s just how I roll!

A bunch of people commented on my long complaint about how mad I get in airports while travelling with a wheelchair. Disabled or not, lots of folks notice the dehumanizing treatment that goes along with air travel. Of course it is not just air travel or airports; it’s any big institution whose power goes unchecked by the people it (in theory) serves.

* S. Bear Bergman started a whole different conversation from thinking about diversity training issues. He asked his readers to undergo the cruel discipline of Twitter (or, to enter 140 character thoughts into a form on LJ) some short, crucial concepts on being trans. A bunch of people, including Kate Bornstein, responded! Now, that’s a cool sparky cascading result to this contest!

* Amanda’s comment about her brother being treated like a pre-schooler in a social group for people with disabilities was touching and made me boiling mad. That is the treatment most older people get in nursing homes and assisted living and it’s what a lot of people with disabilities get too. Hello to Amanda’s brother, and I wonder what he would say to what I wrote?

There is a very long interesting comment with good links, by Digital, over on “Highly trained girl-monkey sys admin bait“. She points out that it takes strong communities to make a climate where our stories win out over the acceptance of sexist ones, and links to the Anita Borg Institute. Well, I have to agree. I’ve been part of the Systers email list for years and am very happy to work for BlogHer, which was just honored with the Anita Borg Social Impact Award!

I look forward to more amazing comments! To everyone I haven’t yet mentioned… I’m reading your comments and blog posts, too! Thanks for your comments and thanks for reading.



Translation: Jesusa Laparra (1820-1887)

Posted on by Liz

Here’s another chapter of my thesis. I hope someone enjoys this or finds it useful! Someday I’d love to spend a few years traveling around to different libraries in Spanish America looking up old issues of these journals, finding and collecting and translating poems.

Jesusa Laparra (1820-1887)

Jesusa Laparra and her sister Vicenta, originally from Guatemala, founded and edited a women’s journal, La Voz de la Mujer, in the mid-19th century; started a literary magazine, El Ideal; and wrote for other progressive and feminist journals. Jesusa wrote poetry on mystic, romantic, and religious themes. Her books include Ensayos poĂ©ticos (1854) and Ensueños de la mente (1884) (MĂ©ndez de la Vega).

Her sister, Vicenta Laparra de la Cerda (1831-1905) was a poet, playwright, and essayist on the rights of women. With Jesusa, she published several journals. A mother of eight children, Vicenta was known as a singer and soloist, collaborating and performing with other artists for benefit of the Teatro Carrera. She is also known as the creator and founder of the Teatro Nacional in Guatemala. Her political essays in El Ideal resulted in her being forced into exile from Guatemala to Mexico, where she founded a school for girls. Vicenta published books of poems, including Poesia and Tempestades del alma; plays such as “La hija maldita,” “Los lazos del crimen,” and “El ĂĄngel caĂ­do;” the novel La CalumnĂ­a (1894); and other works of history and literary criticism.

The Laparra sisters and Vicenta’s husband went into exile again, from Mexico to El Salvador and Costa Rica, where they continued their commitment to teaching women “self-improvement.” Jesusa and her sister fought not only for the rights of women but for the rights of Native Americans. Though she was partially paralyzed and in a wheelchair for many years, known as “La poetisa cautiva” or ‘The Captive Poetess,’ she continued her careers of writing, teaching, and public speaking (Laparra de la Cerda).

The Laparra sisters’ political and literary circle included MarĂ­a Cruz, Elisa Monge, J. Adelaida ChĂ©ves and her sisters, Dolores Montenegro y MĂ©ndez, Lola Montenegro, and Carmen P. de Silva. There might be connections between the Laparra sisters and another set of interesting sisters: the Guatemalan poets and editors Jenny, Blanca, and MarĂ­a Granados, who wrote for El Grito del Pueblo and who founded the magazine Espigas Sueltas in 1929.

Many, in fact most, Latin American anthologies and biographical dictionaries that I consulted did not include information on the Laparra sisters despite their extensive international publishing and editing history. A small selection of their verses can be found in Acuña HernĂĄndez’s AntologĂ­a de poetas guatemaltecos (1972).

“La risa” (1884) is written in redondillas, that is, rhymed quartets of octosyllabic lines de arte menor. It describes the emotions behind a laugh of despair and the impossibility of communicating grief and pain in words. 


La Risa 


Hay una risa sin nombre,
sĂłlo de Dios comprendida
risa sin placer ni vida,
risa de negro dolor;
funeraria, envenenada,
mĂĄs dolorosa que el llanto,
porque es engañoso manto
donde se oculta el dolor.

Risa que, al salir del labio,
para animar el semblante, 
deja una huella punzante
de amargura y sinsabor.
Infeliz desventurado,
es aquel que asĂ­ se rĂ­a,
que esa risa es de agonĂ­a,
es de muerte, es de pavor.

Como el esfuerzo supremo
que estremece al moribundo,
al desprenderse del mundo
para nunca mĂĄs tornar:
dilatada la pupila,
rĂ­e con indiferencia, 
despreciando la existencia
que por siempre va a dejar.

AsĂ­ es la risa funesta
de un corazĂłn desdichado
por un dolor desgarrado
que no se puede arrancar.
Lleva la muerte consigo,
y rĂ­e sin esperanza,
porque nada, nada alcanza 
su martirio a disipar.The laugh


There's a laugh that can't be named,
that only God understands;
a laugh without life or joy,
a laugh of black sorrow;
funerary, dripping venom,
more painful than a lament,
because it's a cloak of deceit
to hide pain and grief.

Laugh that, as it leaves your lips
to liven your face,
leaves a heartrending trail
of bitterness and discontent.
Unlucky devil,
that's why you laugh;
it's a laugh of agony,
of death, of terror. 

Like the last throes 
that shake the dying 
when they give up this world
never to return;
eyes open and staring,
you laugh with indifference,
despising an existence
you're leaving forever.

That's how it is: the fatal laugh
of a heart undone
by clawing pain
that can't be rooted out.
You endure your own death,
and you laugh without hope,
because nothing–nothing could match
or dispel your martyrdom.

Photo of Vicenta Laparra de la Cerda – Jesusa’s sister



Infrastructure for civil service

Posted on by Liz

I have drunk the Koolaid.

I’m so excited to see the change.gov site. Mandatory civil service, I expected. But this goes way beyond what I hoped. This could mean real participation in government. Activism – real activism but built into our government – mobilization of people who have the most time and energy, not through churches and charities but through an organized infrastructure for nationwide civil service.

The Obama Administration will call on Americans to serve in order to meet the nation’s challenges. President-Elect Obama will expand national service programs like AmeriCorps and Peace Corps and will create a new Classroom Corps to help teachers in underserved schools, as well as a new Health Corps, Clean Energy Corps, and Veterans Corps. Obama will call on citizens of all ages to serve America, by developing a plan to require 50 hours of community service in middle school and high school and 100 hours of community service in college every year. Obama will encourage retiring Americans to serve by improving programs available for individuals over age 55, while at the same time promoting youth programs such as Youth Build and Head Start.

People will put in work they can be proud of. Rather than accepting help shamefully from “charity” everyone can be part of building communities and services. I think of the short but intense time I spent helping with Katrina relief in the Astrodome in Houston. And the moments when authority decreed and doled out, and the depression that caused, vs. the moments when people had the tools at hand, the resources, to organize themselves.
These volunteer corps will build structures where that work is respected, where it will lead to experience and self confidence and paying jobs for people.

I’m heartened by the Obama administration’s apparent respect for people with disabilities, teenagers, and senior citizens.
Look at this. It gives me chills. I keep looking at it and crying with happiness. I believe it. Agenda: Plan to Empower Americans With Disabilities.

First, provide Americans with disabilities with the educational opportunities they need to succeed.

Second, end discrimination and promote equal opportunity.

Third, increase the employment rate of workers with disabilities.

And fourth, support independent, community-based living for Americans with disabilities

YES!!! Someone GETS IT.

Thank you.

I think of all the fantastic people I know online who are living with disabilities and who contribute so much to society with all their intense, hard work. Work that is not recognized as such. They don’t need charity or a hand out they need decent health care and for their talents, knowledge, and work to be respected. This administration really could lay out paths for that to happen.

Look at the goodness of the change.gov site. It’s savvy, it’s well built, it was poised for launch. The organization of the Obama campaign convinced me deeply of this coming administration’s competence &efficiency, & their ability to use technology with good common sense. That convinces me too.

Take the things that are GOOD about the military, the Army, and make a decent U.S. Civil Service Corps where service is respected, turn all that to the power to build rather than destroy. Making things better isn’t the job of corrupt profit-based corporations or punitive institutions, or the prison-industrial complex, or religious-based “charity models” — building and maintaining our country is the job of government, which is – or will be – everyone’s job.

election night!



I am not The Wheelchair: Air travel and disability

Posted on by Liz

written on the plane, the other day

When I enter an airport I’m in hostile territory. Dread and courage fill me. In addition to the dehumanization everyone around me is about to experience, the stripping off of possessions and shoes like Inanna entering the underworld, the x-raying and knowledge that any random act, out of our control, could result in police intervention, in taking away our illusion of freedom — in addition to that I am covered in the cloak of wheels, I have lost my human soul, I know that in the eyes of power and ignorance, I am luggage, an inconvenience, an animal, an exoskeleton.

Airline and airport staff talk to each other loudly over me. I am “The Wheelchair”. What I say, what I ask for, what I want, doesn’t signify. My words don’t mean a thing. My money can’t buy human dignity. I have lost my Agency. Speaking creates a cognitive dissonance, a problem, an incident. Inside myself, I have become bravado and willpower, entitlement and stubbornness.

Let’s glide over the shunting into special lines and glass walled holding pens and pat downs… Let’s ignore the issue that the law (the Air Carrier Access Act, in the U.S.) says the airline *has* to let me break down my chair and put it in the cabin, which they almost never will allow, instead *taking away what is crucial to me* and throwing it in the hold of the plane, perhaps to be left behind or damaged, the non-acknowledgment that them taking my wheelchair away puts me in a state of absolute panic. Let’s leave those problems behind.

Let us skip to the Gate.

Here is an example of how the illusion of human decency, manners, could be preserved.

Me (having waited my turn): Hello. I’d like a gate tag for my wheelchair please.

Gate Agent: Here you go. Would you like to pre-board?

Me: Yes, thanks.

Gate Agent: Please let me know if we can do anything else to assist you.

Or this:

Me: Hello. How’re you doing? I couldn’t get a seat near the front of the plane. Could you try to get me an aisle seat near the front? Otherwise I have a hard time getting on and off the plane and getting to the bathroom.

Gate Agent: Oh, the plane’s pretty full. We can probably move you up though since our airline keeps a few seats near the front of the plane open till the last minute for people who need them. Or, I could just switch someone out. Or I will ask the flight attendant to find someone to switch with you once you are on the plane.

Me: Thanks. If you can’t move my seat now, I’m sure someone will switch if I ask once I’m on the plane.

*I happily go whooshing down the really fun ramp.*

Flight Attendant: Hello. (Unfazed and correctly assessing situation.)

Me: Hi. My chair gets gate checked and I have a tag on it. When it actually gets put on the airplane, could you let me know, so that I have that assurance? I need to know that it hasn’t been left behind.

Flight attendant: Sure. Do you need any other help?

Me: Oh, I can get it, but if you don’t mind, would you mind putting this bag over 6A?

Flight attendant: Sure, watch your step.

Me: Yup. Thanks.

Flight attendant: *Doesn’t watch me get on the airplane in a hovering way as if I’m a freak show stuntwoman, or going to face plant*

Once in a while, one tiny leg of travel will go smoothly with most of these elements. People will behave with normal politeness.

Here is how it usually goes instead, an example with everything gone awry.

Me: (waiting in line)

Gate Agent: (in hurried conversation with other agents who have flocked about in dismay) Can you help out The Wheelchair?

Me: *shoots fuck off rays in every direction*

Gate Agents: (more and more agitated)

Me: *pretends to ignore it*

Gate Agent: Miss, MISS? You need to come over here. Did you fill out paperwork? Why don’t I have you down? Are you travelling alone? I’ll need to call someone. You need one of those, a special, a …?

Me: I don’t need an aisle chair. I don’t need any extra help, thanks. Could I have a gate tag for my wheelchair?

Gate Agent: You need to do the paperwork. It’s our policy. If there’s a wheelchair, we have to do the paperwork. Why didn’t they do this at the front when you checked in? We’ll need to take that wheelchair and check it now.

Me: No, sorry. I’d just like a gate tag.

Gate Agent: We’ll take care of that.

(They want me to get into an airport-owned chair, and take my own chair away. To make sure it doesn’t get lost? To treat it like baggage?)

Me: No.

Gate Agent: (Argues) (Calls people) (Consults all other gate agents, flight attendants, the pilot, and/or security officers)

Me: Bye.

Gate Agent: Here’s your gate tag. *comes around the kiosk thing* I’ll just put this on here. *Bends over, touches me or grabs my shoulder or the back of my chair, and tries to strap the elastic band of the tag onto my WHEEL.*

Me: I’ll take that, thanks.

Gate Agent: Persists in trying to strap tag to my tire. Argues.

Me, firmly: Thank you, but no. I’ll put that on. THANKS.

Gate Agent: But I have to just, let me…

Me: NO.

Gate Agent: *sends me major hate rays* (In their mind, I have not properly accepted and appreciated their noble, generous help.) You’ll need to check this wheelchair at the door. They’ll bring it to you at the other end.

Me: Yes, I know. THANKS. (Special fuck-off-and-die smile.)

Later

Gate Agent, with several other flunkies: Miss. MISS!!!

Me: Yes?

Gate Agent: We need you to preboard now. *grabs wheelchair*

Me: LET GO OF ME.

Gate Flunkie, talking real loud and slow: I need to help you get on the airplane Miss. *grabby McGrab*

Me: DON’T TOUCH ME!

Gate Flunkie: I need to help you get down the ramp.

Me: Thanks. No you don’t. Stop. Thanks very much but no.

Gate Agent: Excuse me Miss but we’re trying to help you. It’s our policy that…

Me: I don’t need any help thanks very much.

Flunkie: I have your aisle chair and…

Me: I don’t need one. Thanks. No. I’m getting on the airplane. Byeeeeeee.

Flunkie and Gate Agent: Miss! Misss!!!!!

Me: *wheels fast down ramp*

Flunkie, running after, grabbing: I have to walk behind you!

Me: No you don’t. Get off me.

This almost always happens. Not every time, and not all of it at once — EXCEPT FOR MOTHERFUCKING TODAY ON STUPID US AIR, but it happens enough that I go a bit crazy anticipating it. I usually get on the plane mad as a hornet, humiliated, outraged, and overdetermined not to cry.

Keep in mind that I barely need any help or special consideration, yet I still get treated with amazing inconsideration and disrespect. People who need help transferring or other help get even more disrespect. Likely I’ll be there someday; will my anger have burned me into a little cinder, by then? How will I cope? (Huge props to you all who have worse struggles than mine.)

Today I arm-checked a particularly obnoxious gate agent who would not stop trying to grab for my chair back and my shoulder. I just threw my arm out and blocked her hand hard enough to hurt. It left a bruise on me and likely on her. I feel lucky no one came to arrest me for assault. She was really mad. But, I told her not to touch me, and she kept grabbing. She went beyond grabbing the back of my chair and was on my shoulder. I felt mad enough to get in a fist fight right there. I was so mad I got on the plane without giving
anyone my ticket.

No, wait. Back up. If we’re in Europe or China, or probably anywhere else other than the U.S., pretty much the instant I set a wheel into the airport or train station this will happen:

Me: *wheeling along about to go to the bathroom or shopping or something*

Random station employee, very agitated, grabs me: Miss! Miss, let me help you.

Me: What?

Random station employee: You need to come this way. *tries to start pushing my wheelchair.*

-or-

Random station employee: Excuse me sir, is she going to need help getting on the train/plane?

Me: Hello. I’m right here. You can talk directly to me.

My companion: *drools, twitches, and plays dumb*

Random station employee: Sir, will she need a ramp or a lift? Could you please come this way?

Me: HELLO!!!

In Budapest they tried to put me into an ambulance to travel about 200 feet from airport door to airplane stairway. (I got on the bus everyone else did, instead.) In Hong Kong I did a little dance with a woman whose job it was to push me – I wouldn’t let her grab my handles, and I was faster than she was, and swivelled to face her whenever she tried to go around back.) It has me on edge. I expect absolute bullshit and disrespect, “it’s our policy”, and when it comes, it sinks down inside me like a stone, I swallow it, I swell up with possibly disproportionate rage and pride. I do more than I would otherwise, while I can, to show away, to prove these fuckers wrong, to spit in their faces.

But back to the U.S.A. and its airport situation.

I know, it is just some bad “sensitivity training” and clueless people, who have mostly to deal with older folks who have an attendant or relative travelling with them. I would like to readjust their training.

If you work for an airline or somewhere, and you see a person with a disability, you might assess whether they look like they need help. Or offer once, and back the hell off if we say no. For example, I have obviously a business traveller who just wheeled myself through an entire goddamned airport. I value my independence. I know how to ask for help if I need it. GO HELP SOME LADY TRAVELING WITH 3 CHILDREN for god’s sake. She is the one who obviously needs help. Push her stroller for her, if you must push something.

Their training seems to be in one mode. That is: An object (formerly, perhaps, a person) comes in a wheelchair, pushed by a helper. That helper will need even more help transferring the person-in-wheelchair to an airplane seat and out again.

If the wheelchair belongs to the airport, then the agent has to call the other end or enter something in the computer system, so that the destination gate has an airport wheelchair and staff to push it so that the casual wheeler or older person without their own gear can get through the airport. (However, this never ever works and it is always a big surprise on the other end, causing more consternation and kerfluffle.)

Or: radical shock, the person might have their own wheelchair. The agents never expect the wheeler to be traveling alone. They’re very anxious if you don’t have an attendant or companion. I think they’re worried, perhaps from past experience and with reason, they will have to assist a difficult transition from chair to aisle chair to seat. The agents AND the flunkies who push the chairs should be educated in the variety of people’s level of ability.

I also know it’s not the end of the world that once every few months someone tries to cross my boundaries and won’t listen. Cry me a river… A lot of people with disabilities have to put up with that shit all the time, every day, and tolerate all sorts of things, because they have to, to survive.

I would like to continue from here to talk about race and disability for a moment. Being patted on the head and grabbed in airports is not in the same league as the racist assumptions, threats, and violence that, for example, black men or men assumed to be “arab” face in the same situation. We don’t have to compare those things, but I want to point that out, in part because I don’t think most white people think about it, but in part because I feel sometimes like it is black men in many situations who notice the bullshit way I get treated as a disabled person and who throw me knowing and sympathetic looks, that they GET IT… and with the added dimension of laughing at me a little for my inability to hide my anger and for my assumption that things could be different, for my sense of privilege and entitlement that means I display outrage and am not afraid of being treated as a threat and dragged off to some concrete holding cell (though, in fact, I am a little afraid of it.) I often appreciate those knowing looks and sympathetic remarks. Even when they are a little bit amused or scoffing… It is a little bit like gaydar, an eye contact held an instant longer than usual, with a little spark of sympathetic communication. What do you think of my perception? And that it is particularly gendered? I am unsure what to make of it.

Women with little children are also noticers of ridiculously dehumanizing police-ish petty bureaucrat behavior; they expect it, they don’t get particularly dehumanized but are treated with a bit of extra hatred and the expectation of inconvenience and something of a burden of guilt. We bond with the sympathy of those who are Inconvenient, bulky, overflowing the boundaries. That bond is more the bond of concrete offers of help. Amazingly, it is women overflowing with children, overburdened, who speak to me with humanity. I always try to help them too. I entertain their children, I get them to stop crying, I offer them trinkets to look at and hold, I draw pictures in my notebook or teach them finger games, I give them rides in my lap if we make friends or merely point out my sparkly LED wheels.

On the last leg of this flight I sat near the front of the plane, not presuming to first class, or the first row of the coach section, but picking an aisle seat in the second coach row. I planned to ask the person sitting there if they would switch with me – my seat, which I couldn’t get anyone at the gate to help me switch, was in something like row 25, also an aisle. A significant distance for me at that moment as I only had a cane, not my crutches, and it was a long flight where I’d need the bathroom more than once. The man whose seat it was refused to change. The man across the aisle was outraged, and got up to change places with me. I cried with gratitude. When we got off the plane, I shook his hand. The whole flight I had to sit next to the selfish asshole who did not appreciate the fact that to him walking 20 extra steps was trivial. I wish him a special place in hell. Truth be told, for all the hours of the flight, I wished him to be disabled and face that wall of inhuman indifference. Someday, he will be old, and the wall of ignorance he built for himself will wall him off from the rest of humanity, because assholes like that don’t have friends or family left by the time they feel the effects of age. I don’t like festering in that level of bitterness, but sometimes, that’s where I end up, ill-wishing others so that they’ll learn their lesson, though they won’t, and it’s pointless. Conquering that internal resentment or hatred is part of the difficulty of being disabled, I think.



DIY: Access Hacks project

Posted on by Liz

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.



Caltrans evades legal responsibility for sidewalk ramps

Posted on by Liz

Ah, California. Sometimes you come through with your sidewalk accessibility, your ramps and ADA compliance, and sometimes you just don’t. I opened up my issue of New Mobility magazine this morning over coffee to find a brief and horrifying news snippet. Caltrans is fighting the ADA. “CDR and other disability groups filed suit in 2006 demanding Caltrans meet obligations to provide accessible walkways and curb cuts.” Read more about it here: CDR vs. Caltrans. Here’s part of the horrifying bit, a quote from CDR president Laura Williams: “We are very concerned that they are going to use this as a challenge to the ADA itself, which then affects everyone nationwide, if they should prevail.”

Your tax dollars at work, as Caltrans wastes your money you paid to create great public transit, on legal battles to screw us disabled people who are ALSO TAXPAYERS.

In my own small town here on the SF Peninsula, it took me months just to get an answer about who was responsible for a stretch of sidewalk. And in part, that delay was because people tried to tell me that the county, city, or Caltrans might be responsible for my sidewalk corner. No one knew and there was no way to find out.

Here is at least one thing that cries out for a quick technological fix. Someone make a Google maps mashup that demarcates who is responsible for which bit of sidewalk and crosswalk. How hard could it be? Does Caltrans have the information available digitally? If so, they should make it available online. Here is the Caltrans site map. Can you find coherent information about ADA compliance, sidewalks, curb cuts, and crosswalks? Can you figure out how to find which sidewalks Caltrans “owns”? Can you figure out how to complain? I couldn’t.

Caltrans controls around 2,500 miles of sidewalk. They can’t fix them all at once, there isn’t the money or time. They haven’t surveyed their walks for ADA compliance, and they’ve had many years to do that work. But, worst of all, considering the practical realities, they don’t even provide a way for their users to report ADA problems, and they won’t take responsibility for their sidewalks.

It burns me up.

I am a happy and proud member of the super-awesome Flickr group !Rock That Disability! This morning’s realization that my own state, California, center of much disability rights activist history, is with my tax money funding a fight against the Americans with Disabilities Act. The very ADA that Barack Obama would like to support and extend; a politician who cares about the human rights of people with disabilities. I will be writing some emails to politicians this morning, notably my representative and Governor Schwarzenegger. But, I also created the Flickr group Inaccessible!. Here is its description:

A blog for photos of inaccessible places and spaces. Ever been frustrated at lack of wheelchair access, insane potholes in the sidewalk, stairs, badly configured bathrooms too small for wheelchairs, badly placed handrails, elevator buttons too high for you to reach? Snap a photo, label the place as clearly as possible, and explain why it is a barrier.

My hope is that this group will be useful to building owners and people who want to make their environment more accessible. It also helps those of us with disabilities to express our frustration and to record daily encounters with barriers to access. Documenting the problems may also help us to follow through and try to get those problems fixed by the people responsible for them.

I populated the group with a few photos I happened to have tagged already in my photo archive. Because sometimes when I’m facing a giant flight of stairs, a huge hill, a bathroom I can’t get into, or a museum where I can’t go with my kid to the exhibits, I snap a photo. Maybe 1 time out of 100 I bother to do this. But what if we all did it, every time, and built up evidence? If I document and label all the worst intersections, broken sidewalks, and so on?

I would love to see something good come of this outrage, something like Fixmystreet.com. I consider my own time and energy and expertise. I have done a gazillion BarCamps. What about an AccessCamp, for some web 2.0 love for disability rights activism?



My evil mastermind futuristic wheelchair golfcart thing

Posted on by Liz

Okay, I totally want this,

so I can zoom around wearing a sort of Servalan dress, like this, in it:

Something more in black, with a ridiculous collar that looks like bat wings and that stands up about 2 feet over my head.

A futuristic space pistol would be nice too!

It’s interesting that it’s being pitched as a Segway-like device rather than as a powerchair. On the other hand, I’ve always thought about the Segway, “What the hell, 200 pounds of machinery and I can’t sit down?”

The people who call it ridiculous miss the point. They’ll get it, though, when I wheel up to them all silent and menacing and then push a button to dump them into my shark tank before my GIANT LASER comes out of the volcanic island and starts bleeping gently before it takes over the world!

It lacks lasers, and a little platform for my nanobot-enhanced telepathic cat.

There is no way I am getting in something called a “Jazzy” especially if it looks like a garage sale office chair fucked a toaster.

I cannot be contained in less than the powerchair of an evil mastermind!



If babies were all considered disabled

Posted on by Liz

This morning I woke up thinking, “What if babies were treated as the disabled are treated?”

What if infancy was medicalized the way that old age is medicalized?

Pregnancy would be an embarrassing, extended disaster. It would mean a person was about to go down to the very bottom of our economic system. You’d be quarantined in your home by governmental order. In order to go out in public, you’d have to prove you don’t have a dangerous infectious disease that makes your stomach swell up. You’d get doctor’s signatures send in forms to your insurance company and the government to declare you were pregnant, and every couple of weeks you’d have to renew those forms.

Glossing over labor and delivery, let’s consider what happens when you’ve got a baby. It can’t walk! It can’t eat food! It’s disabled, poor thing. It needs special nutritional supplements that can only be prescribed by a doctor. It also needs a special device called a stroller which costs maybe five or ten thousand dollars. You’d apply through Medicare to get one. Maybe they won’t approve one for use outside the home! There’s stroller stores, especially online, but wow, would you buy a Bugaboo stroller that cost $5000 without getting to see it first and whether it would be good for your situation, or would fit in your car or whether you could lift it up? By the time your prescription for the “stroller” had been approved by doctors and you’d proved through several insurance company and social worker home visits that you indeed had a baby, and by the time the stroller arrived, your baby could walk. Oh, you could rent a basic stroller from a medical supply store for 10 bucks a day, but it would be MADE OF LEAD.

In some ways you feel that the doctors and social service agencies have a bit of an attitude that if they delay long enough, the problem will shift, and disappear. Just as they act like older people or people with disabilities are going to die soon anyway, so why are they fussing so much about having this wheelchair, or ventilator, or home health care? If they wait long enough, the problem will disappear.

Instead of this medicalized model of the distribution of goods and services, we have Babies R Us, giant stores full of shelves where you can try and buy all manner of highly specialized products for babies. In fact this industry is fairly new. It was created when companies realized that babies change their requirements and abilities every couple of months and that there were people who would buy all new junk for them. Instead of carrying babies in slings or on our hips and requiring that cars have seatbelts, we have 3 different sizes of car seat and a million varieties of strollers good for differerent ages. We have cribs and playpens and Pack-n-Play and Exersaucers and those bouncy things that go in doorways.

Disabled people, and older people, are a similarly lucrative market. The way the market is utterly sucks. There is no Crips R Us or Spazzmart where I can go browse the shelves of fascinating bright colored crap. INstead, I was at a sort of auto body shop warehouse wheelchair store, with a couple of mechanics who order stuff off the internet for me and who guard the knowledge of how to fix wheelchairs jealously.

You can order wheelchairs off the Internet these days but wheelchair stores haven’t change their model of trying to make a profit. And from what I can tell they are failing to make much of a profit. Or if they are it’s at the top and the store doesn’t reflect it.

Seriously, it’s as if we all bought our cars from the skankiest auto repair shops, and there weren’t really any sorts of customizations or accessories we could put on them. There wouldn’t be any auto parts stores. Right now, I can think of at least 3 big auto parts stores within a mile of my house, and every hardware store, Target, and drugstore has an aisle of junk to bling out your car.

I put my hope in the baby boomers; as they all age, they will expect to be able to cruise the aisles of the CripMart and get flowered cane tips and colostomy bags to coordinate with their power suits.

26 million Americans have a severe disability. 1.6 million people use wheelchairs, and I’d bet my boots that many more people would if they could: if using a wheelchair was shown as useful, cool, empowering, for real, and if old people didn’t have to jump through 20 million hoops to get decent ones that don’t weight a hundred pounds. Instead, older people limit their activities and hide their struggles, ashamed, and scared to let anyone see that they might need help, because our system of “help” is so demeaning, dehumanizing, and awful that they’ll rot in an armchair in front of their televisions for 10 years till they die rather than admit that they might need a walker. It’s not stupid pride. It’s a reasonable fear that they will lose whatever independence and autonomy they still have.

I was talking with people about this who argue that maybe the market is limited, so companies don’t think they can make a profit. But it’s not all that limited. There’s something like 5 million babies born every year, and look at that market in baby stuff. If you look at who’s elderly in the U.S. Census the numbers are completely crazy. And in fact… even if you assume that disabled and elderly people are not going to be able to afford to buy this stuff, they’ll have relatives who might be able to.

Having there be real competition to build and sell this junk will help bring the prices down. In 1984, there was no market for “mountain bikes”. Now there’s shops with them everywhere. Though I couldn’t find how many are sold in the U.S. in a year, I wonder how those numbers compare to the potential wheelchair market? My point is, someone is missing a giant capitalist opportunity.

How hard it was for me in the 90s to get my first wheelchair! On the advice of a social worker, I stole one from the hospital, the one I was in as I sat in her office crying and she told me she couldn’t help me because my diagnosis wasn’t solid. My second wheelchair, that I got from a fellow student: one with good insurance. The way that if you have a nice chair, other disabled people look you up and down and guess, “Car Accident?” because only people with good insurance can have nice wheelchairs, and good medical insurance is so very, very rare, while car insurance companies for some reason are likely to be more decent and pay up for wheelchairs promptly, covering the entire cost. The few decent wheelchairs that exist are passed from hand to hand, often through charitable foundations.

Ruth, at A Different Light writes very well about civil rights, human rights, and disability, for example in A Matter of Life and Death.

Then we have people who say they want to die because they cannot get out of their homes because there have been In Home medical equipment restrictions or they can’t afford medical equipment. Their wheelchair breaks and they can’t get another one so they are immobile. This leads to depression. Perhaps their caregiver is an aging parent who can no longer care for them – or dies. All of these changes make disabled peoples’ lives unmanageable and can make suicide look like a way out.

In the last week or so I read through all of Ruth’s archives on this blog, and through some of them on her other blogs. She makes many good points about the consumer model vs. the medical model: try here in Seeing advocacy as a tool and in On distancing from the disabled.
I realized over this past week how the medical and charity models are related — and how wrong they are.

Let people choose for themselves what they want and need!

If you would like to do a useful thought exercise, extend my stroller model to thinking about chairs and cars. People sit in regular chairs: office chairs, kitchen chairs, armchairs. There is no reason that they have to. You might argue if you were from another culture that it would be healthier if we sat on the floor or learned how to squat on our heels. (And they’d generally be right). Likewise, if we just walked places, or ran, or biked, we wouldn’t need cars to get to work. Yet… wanting to sit on a chair or ride in a car does not make a person “disabled”. But even people in dire poverty are often able to scrape up enough money to have a car and certainly to have chairs. If those things were only available to people who have the health insurance of the insanely privileged, our entire societal structure would weaken. I’d extrapolate this to say that if we made it easier for the disabled and elderly to get assistive technology and mobility devices, it would strengthen our entire society.



Down with keyboards, down with pants!

Posted on by Liz

I was thinking today about my silly invention of “smart pants” so that people could just type on their pants. Then I realized something crucial:

Who needs pants!

Seriously, to hell with pants! Down with pants!

Not to mention down with keyboards.

Instead maybe we’ll have little motion detecting rings on our fingers and will just make the barest hints of typing motions. The micro-intent to move will be sensed by the set of rings with tiny wireless transmitters. Or for the prototype, you could have the rings wire up like flexible brass knuckles to a bracelet with the transmitter.

So if I end up like this eventually, I won’t have to type 15 words a minute, and I hope also not to talk like a Dalek.

Why have typing motions at all, then? It might be important to have some kind of physical motion and body memory.

And as I contemplate this Ankle-Foot Orthosis that will soon be mine, I wonder why the thing, cool as it looks (yay for rehab equipment with style!) doesn’t have all kinds of electronic sensors in it. I don’t ask for it to move my foot around, or walk for me like a real exoskeleton would. But I WANT ITS DATA. Data, goddamn it! Think of all the cool data it could be collecting on my gait, on the strength of my hamstrings as my back toe is pushing off. Instead of whining that as the day goes on my leg gets weaker, I could just have a handy graph on my blog so that anyone who cared to know would see how well I’m walking. I noticed at BlogHer that there were exercise pedometer sorts of things that upload and track your workouts on a website and even on social sites. How about for rehab too?

I hope to see some of these mad inventions in the next few years.