At PostSecret

Euthanasia for the mentally ill

Article here.

Slippery slope? Nah.

As long as we're on poetry

One I keep in an obscure email file to find and read now and again. By Linda Bierds:

Osteogenesis Imperfecta
--Michel Petrucciani (1962-1998)

Picture a horse on a shallow path,

the thwick, thwick of its hooves in the grass.
This is the sound of the spine collapsing.

Not a pop, but a rasp, he would tell you,
Petrucciani. Evening, perhaps, a gloss
on piano keys, flute, the metronome's

serrated tip. And perhaps he would speak
of a sudden freeze, an orchard shadowed
by a dozen men, long aprons black-waxed
and flapping. Another place, another

century. Reaching deep in their leather sacks
they are casting water to the vivid limes,
their arms alive with the bow-strokes of cellists.
Then over the fruit an ice begins, dries
into glassy arcs. And over the ice,

the dark harp of thrush's song, and over
them all, the weather. And how perfect
the brindles of ice, he might say, curved like ribs
to those greening hearts. Perhaps he would shift
in his soft chair, weight too great on his glossy bones,

his slowly eroding frame, and ask you
to picture the orchard at dawn. One horse
at rest near the frozen path. Now the thwick, thwick
of apron flaps. Far off to the east,

the slow, equatorial rim of the season
widens. Imagine how fiercely they dip the cups,
the life of their arms, the falling,

how the horse's throat-deep, rhythmic sighs,
and the vapory mist of each dipper's breath

step forth, take their shapes, and are gone.

I shall lift my arms

There's a meme going around: What's your favorite poem by Pablo Neruda?

"If You Forget Me" is my all-time favorite (not an easy thing to decide). Why my favorite? Because I once had a long lazy sexy discussion with someone about which emotion ruled here -- anger, sadness, resignation, longing. And aren't long lazy sexy discussions exactly what poetry is for?

If You Forget Me

I want you to know
one thing.

You know how this is:
if I look
at the crystal moon, at the red branch
of the slow autumn at my window,
if I touch
near the fire
the impalpable ash
or the wrinkled body of the log,
everything carries me to you,
as if everything that exists,
aromas, light, metals,
were little boats
that sail
toward those isles of yours that wait for me.

Well, now,
if little by little you stop loving me
I shall stop loving you little by little.

If suddenly
you forget me
do not look for me,
for I shall already have forgotten you.

If you think it long and mad,
the wind of banners
that passes through my life,
and you decide
to leave me at the shore
of the heart where I have roots,
remember
that on that day,
at that hour,
I shall lift my arms
and my roots will set off
to seek another land.

But
if each day,
each hour,
you feel that you are destined for me
with implacable sweetness,
if each day a flower
climbs up to your lips to seek me,
ah my love, ah my own,
in me all that fire is repeated,
in me nothing is extinguished or forgotten,
my love feeds on your love, beloved,
and as long as you live it will be in your arms
without leaving mine.



And in original Spanish, for those that can fully appreciate it:

Si Tu Me Olvidas

Quiero que sepas
una cosa.

Tú sabes cómo es esto:
si miro
la luna de cristal, la rama roja
del lento otoño en mi ventana,
si toco
junto al fuego
la impalpable ceniza
o el arrugado cuerpo de la leña,
todo me lleva a ti,
como si todo lo que existe:
aromas, luz, metales,
fueran pequeños barcos que navegan
hacia las islas tuyas que me aguardan.

Ahora bien,
si poco a poco dejas de quererme
dejaré de quererte poco a poco.

Si de pronto
me olvidas
no me busques,
que ya te habré olvidado.

Si consideras largo y loco
el viento de banderas
que pasa por mi vida
y te decides
a dejarme a la orilla
del corazón en que tengo raíces,
piensa
que en esa día,
a esa hora
levantaré los brazos
y saldrán mis raíces
a buscar otra tierra.

Pero
si cada día,
cada hora,
sientes que a mí estás destinada
con dulzura implacable,
si cada día sube
una flor a tus labios a buscarme,
ay amor mío, ay mía,
en mí todo ese fuego se repite,
en mí nada se apaga ni se olvida,
mi amor se nutre de tu amor, amada,
y mientras vivas estará en tus brazos
sin salir de los míos.

Molly Ivins, RIP

A smart outspoken woman, she will be sorely missed. A reminder of what she gave us:

"What you need is sustained outrage...there's far too much unthinking respect given to authority."

"I believe that ignorance is the root of all evil. And that no one knows the truth."

"It is possible to read the history of this country as one long struggle to extend the liberties established in our Constitution to everyone in America."

"The United States of America is still run by its citizens. The government works for us. Rank imperialism and warmongering are not American traditions or values. We do not need to dominate the world. We want and need to work with other nations. We want to find solutions other than killing people. Not in our name, not with our money, not with our children's blood."

"There is one area in which I think Paglia and I would agree that politically correct feminism has produced a noticeable inequity. Nowadays, when a woman behaves in a hysterical and disagreeable fashion, we say, 'Poor dear, it's probably PMS.' Whereas, if a man behaves in a hysterical and disagreeable fashion, we say, 'What an asshole.' Let me leap to correct this unfairness by saying of Paglia, Sheesh, what an asshole." [Molly Ivins about Camille Paglia]

from her last column, January 11, 2007: "We are the people who run this country. We are the deciders. And every single day, every single one of us needs to step outside and take some action to help stop this war. Raise hell. Think of something to make the ridiculous look ridiculous. Make our troops know we're for them and trying to get them out of there."

Midweek slumgullion #26

Thought-provoking reads from across the pond, courtesy of Ouch!:

From the New Statesman: "Funny peculiar" -- Mat Fraser on disability and what is funny.

The Guardian: "I won't be happy until I lose my legs" -- A woman tellls of her lifelong desire to be a double-amputee.

The disabled and Wii: An open letter to Nintendo -- I've wondered if the new gaming system would or would not be an opportunity for exercise for the involuntarily sedentary, or anyone whose athletic options are limited. The comments are interesting.

Eyes on whose prize, part 2

It was during the transphobia/delink Twisty debates across feminist bloglandia last December that Kactus at Superbabymama happened to note that she'd added this blog and several others to her blogroll. In the comment discussion that followed, an anonymous commenter noted with some resignation that The Gimp Parade links to Heart at Women's Space/Margins, the radical feminist blogging community (if there is one) for several of the women who expressed such hateful transphobia on that ugly I Blame the Patriarchy thread.

My blogroll has since erased itself and I've been slowly adding back what I can remember, but at that time I tried to express whatever strategy it is I've employed for organizing my blogroll. This wouldn't be so important, except that I consider my blogroll the best, most exciting part of this blog because when I began this site in 2004 there weren't so many disability rights bloggers around. Check it out now -- the gimp blog section is joyfully unwieldy.

Here's that commentary on my blogrolling strategy:

I currently have links to both IBTP and Heart's blog, though I've thought many times in the past few months about deleting the link to Twisty. The fact that I just haven't taken the time to tweeze through my blogroll in a long time, despite adding new links I'm excited about, is one reason Twisty is still there.

Another reason she remains linked at my blog sidebar is because my blogrolling policy in so fuzzy and arbitrary in many ways already: it's divided into the crips and the nondisabled, national magazines about disability are mixed in with very small-audience disabled bloggers, Go Fug Yourself is right there in the list with Women's Space.

A few disability bloggers I seriously disagree with are listed simply because disability rights discussions of any kind and disabled bloggers are, frankly, hard to find, not sexy enough to be popular and we need to network and learn from our diverse experiences as disabled folks, if we can.

The final reason Twisty is still blogrolled is because of her recurring use of "fucktard" and some periodic objections to it in comments when she does use it. It's not news to me that all feminists are not my friends, with regard to disability politics, and I don't want to be oblivious of discussions that concern my interests. I have a hard time separating the outright offensive from the clueless, when both may be a part of the feminist movement that I, too, consider myself connected too. Ignorance on disability as it relates to feminism (or even generally) is just too heartbreakingly common. I confess I don't know where to draw the blogrolling line.

Heart's blog stays on my blogroll. I don't find her to be particularly knowledgeable about disability rights and politics, but in many other ways I believe her to be a great resource and committed to a level of diversity found on few white, nondisabled feminist blogs.

I don't mean any of the above to excuse the hate spewed on trans folk in the comments at IBTP. I would like to point out though, that despite Twisty's smart-ass comment in her own out-of-control thread, it's entirely possible that her recent health issues kept her offline for a few days and she didn't want to invoke another round of tiresome sympathy by mentioning it. Instead of being the sad cancer patient, she was "controversial" and mean-spirited instead. I believe that's within the realm of behavior she might display. Just sayin'.

Regarding trans hate and radical feminism specifically, I've been trying to connect the dots to ableism and write about it for quite a while now, but haven't been able to put what I know is part of the same issue of feminism, essentialism, bodily truths, and social constructionism together from a disability perspective just yet. I'm so glad Brownfemipower mentioned disabled women in her discussion if this. It is connected.

Aside from the obnoxious use of "tweeze" and the clearly inaccurate characterization of Women's Space being "committed to a level of diversity found on few white, nondisabled feminist blogs" I stand by my rationale. It'd be more accurate to say that Women's Space touches on diverse issues of difference concerning women more regularly than many other feminist spaces, but that's not the same as full commitment, particularly if you include the atmosphere created by regular participants over there.

Anonymous' response to me:

I used to read your blog every post. It hurt me so much though when I finally got around to exploring your site more. For me it's like, I don't know why you've linked to so-and-so. Is it because that's what you truly feel? Are you just trying to provide a wide variety of viewpoints? I don't know.

I do know it scares the hell out of me when I see Margins or Questioning Transgender or Genderville or some other hate site. Even if it's not a direct link.

I'm sure you can somewhat sympathize because ableist sites are just a dime a dozen because so few people even realize it exists. Otherwise good sites, too. Nice folk. Just not aware.

I just want you to know that I know you're doing good work. You've helped me out more than once. But I just can't visit your site anymore because I'm afraid. That's my issue. I'm oversensitive.

Well, Anonymous ain't oversensitive, and blogroll strategy aside, this has really made me think hard since then about my reactions to hate speech, generally, and my disposition against the ableism I encounter.

At the time I responded with this:

The hatred and fear people have about disability and disabled folks is most often expressed through silence or invisibility. In public policy it has historically been through institutionalizing disabled people and making us invisible, but the average person/blogger/commenter simply ignores us instead of raging out loud as is done with hate speech and transphobia.

As a blogroll owner, how do I delink to protest hatred or fear of people like myself if it's expressed by ignoring disabled issues and people? If the common factor of ignorance and cluelessness represents itself as silence too, who do I decide to give up on, in terms of disability issues? And since I do believe transphobia is related to fear and hatred of disabled folks, I don't imagine that where one is expressed the other doesn't also exist. The more I learn, the more I'm sure this is true.

If I made the practice of discounting disabled people's opinions a criteria for who is delinked from my site, I'd have had to remove several of my favorite mainstream feminist spaces in these weeks since Ashley X's story has hit international news. Even if I limited my delisting to blogs where parents of disabled children who disagree with the Ashley Treatment were dismissed out-of-hand, there'd be significant changes.

But back to what's been weighing on me about my own reactions to transphobia, ableism, racism, and other obvious signs of hatred of difference.

What I'd call my formative years as a person with a disability and the need for a wheelchair began in 1983 when I was 15. The Americans with Disabilities Act wasn't passed until 1990, so as I learned about disability in America, I learned that I could not ever count on physical access to public places. The Rehab Act of 1973 was meant to create access in government buildings, but as a high schooler I learned that I could never take it for granted that the pizza joint, movie theater, concert hall, museum, or restaurant my family or friends and I headed to on any given day would actually be a place I could enter. If I could enter, there was still the real likelihood that the outing would end abruptly when I needed to pee and could not access the public restrooms.

Spontaneity increased the likelihood that right there at the front door of the inaccessible building we'd anticipated entering, I and whomever I was with would have to turn away and find someplace else we could go. Calling ahead to ask about accessibility rarely changed the outcome, since nondisabled workers frequently failed to remember some stairs or that the restroom door was just 19 inches wide and in the basement anyway. Sometimes I could be carried inside. Sometimes we could use the kitchen entrance. In some movie theaters lacking dedicated places for wheelchair users to park, I could wedge in next to the smelly garbage can. Once at a Georgetown bar, my friends and I walked the dark and gummy back alley to a delivery ramp that led directly into the cozy back room but the ramp was at a 45-degree slant requiring several of my friends to push my scooter while I accelerated, so I arrived amongst the dinner tables like a bullet shot out of a gun. I'd been in the front of the bar -- an entryway with tables and too-high stools -- and basically been told to leave and try the back door.

When I wasn't alone, there was often some way to make it all work, but only rarely did I ever go anywhere that the building just allowed me in. And there's no immediate recourse to structural inaccessibility. No amount of argument with the manager widens the bathroom stall door or eliminates the need for an elevator. No phonecall or letter made the next day alleviates the problem, either. Pre-ADA, no one was compelled to fix access anyway. They could legally shrug and turn away -- and some did.

There were occasions when the event we'd hoped to attend was prepaid, important, or too exciting for everyone with me to miss, and so I went home or waited somewhere alone while others climbed the stairs without me. I did and do have dedicated friends. My best friend in high school once held me piggy-back through an entire concert so that I could see the band instead of sitting in my chair looking at other people's butts. My brother and father carried me more than once into the melee of the Indianapolis 500, blocks away from our car and up into the bleachers without my wheelchair. Schoolmates carried me on and off the commuter train for the history class fieldtrip into Chicago to see Brian Dennehy perform the play Galileo.

I had a happy and remarkably integrated adolescence because of the love and loyalty of the people around me, but that level of daily exclusion, that impenetrable kind of exclusion that is only fixed with sledgehammers and new elevators IF someone who owned the building decided someday to bother (not on my account, and not when I was waiting at the door) did its part to shape who I am and how I react to discrimination and disregard. I learned emotional ambivalence, the skill of being water off the duck's back, so that I could meet this isolating uncertainty every day.

It's been my defense mechanism, to shrug and say, "oh well." It's sometimes been accompanied by activism and calls demanding access, but mostly only after returning home in defeat. I don't know how other people with disabilities have coped. I don't know how people of color during Jim Crow handled their rage about the back of the bus and the separate drinking fountains, though there is something to be said for being able to get on the bus. I do know something of how women handle the rampant sexism in our culture. These are all relatively quiet violences to the soul.

When the hatred is clearly spoken or made physical, those are different more urgent situations to address. And I'm unfamiliar with them. I spent my youth anesthetizing myself just enough to stand the daily less-violent silent injustices, and I think it means I tend to underact when the hatred is more open. Open hatred is rarely directed at me, because I'm straight, white, upper-middle-class background, educated, and because ableism usually looks different than the racism or transphobia that leads to sudden violence and death. Which isn't to say that the nondisabled person who states, "I'd rather be dead than live like you do," isn't speaking hate -- but almost nobody calls it that and we've all been taught that such a statement is personal preference rather than code for "your life isn't worth as much as mine."

I think my reactions to hatred have sometimes puzzled my friends, the radical feminists ready for a fight, the women of color, lesbian, gay and transgender folk who live with their families under threat of much quicker physical violence than I ever have. I see that and know I need to change and join the greater fight for them and myself a bit differently. How much has the ADA actually changed and how much of my defenses can I afford to dismantle? Does there really need to be a balance between helping myself stay sane and reacting appropriately? It shouldn't be that way.

One of the perks. . .

of having a disability -- some specific impairment (take your pick) -- is that you get to say original, thought-provoking things like this:

I love my feet. I have always loved my feet, no matter how many or which ones I had at any given moment. . .

Read the whole thing, by Sara at Moving Right Along.

Eyes on whose prize

I want to speak my own truth, and honor the words of others when they speak theirs. I want to be an ally, but I don't want to get in the way. I want to make the connections between my experiences and other people's in ways that broaden my understanding and avoid the narrowing of concerns into little camps of people struggling for recognition. I want to interject disability issues into conversations where they seem unspoken or invisible, and I don't want to feel selfish for doing it. And I want other people to do the same, so I can see where I've centered my own concerns and marginalized someone else's. I want to see how the whole big mess fits together.

Wanting so much usually keeps me rather quiet, outside of the small community of disability blogs that have become a comfort zone for me. And the comfort has been needed lately when the Ashley Treatment -- a story so fundamentally about attitudes on bodily and mental difference and disability -- continues to be debated everywhere. Only on sites dedicated to bodily and mental difference specifically, have I seen any real re-centering of that debate away from ableist tendencies to make allowances for behavior or words that dehumanize the less than normal body. I've felt myself turning in protectively to my dis or dis-cool friends: Penny, Connie and Steve, WCD, Amanda, I'mFunnyToo, David. . . .

It's no coincidence I feel safest among those who also have an obvious stake in whether or not physical or mental ability is used to determine how we treat people. It's no coincidence that our widely disparate experiences of disability arrive at the same political sympathies. And I suppose it's no coincidence that when we're discounted as irrelevant or fanatical about the topic at hand, we're all discounted together.

And today, Kevin at Slant Truth reminds me that this is how the system of oppressions works, and that it's happening elsewhere and isolation isn't the right response:

I will come out proud and say that I am supportive of the Trans community and will work from here on out for their full personhood. The hate I have seen lately is beyond my comprehension. I reject it all. Fuck you if you aren’t down.

Oh, I've more to say on this, now that I've resolved to begin. But I wanted to get this much out there now.

Holocaust memorial day

Today is the 62nd anniversary of the liberation of the Auschwitz death camp of WWII and an international day of remembrance of the Holocaust. At a ceremony in Newcastle, UK, where the six million Jews who were murdered were remembered:

Chief Rabbi Sir Jonathan Sacks called on people to remember the other victims of the Holocaust, including gay people, gypsies, the mentally handicapped and the physically disabled.

He emphasised this year's theme of The Dignity of Difference, saying: "At the heart of evil is dislike of the unlike, the fear of difference, the belief that because you are not like me you are a threat to me. Fear becomes hate and hate begets violence and violence turns to murder and murder becomes the attempted annihilation of a whole group.

"The great human challenge is to honour what we have in common while respecting what makes us different because if we had nothing in common we would be unable to communicate, and if we had everything in common we would have nothing to say. If we do not learn the lessons of the past then I fear for our future."

On being a good girl

Posted to the latest Disability Carnival at DisStudies, Temple U, Dave Hingsburger of Chewing the Fat writes about "The Good Girl" and the perils of being trained to be polite and follow the rules. He begins:

Several times a year I'm asked to do an abuse prevention workshop for people with disabilities. As part of that workshop we do a role play wherein Joe (who assists me in doing this workshop) plays a staff and in that role asks someone with a disability, "How was your day." The person with a disability responds, "I don't want to talk about it." Then the question is asked of the group, "What would a good staff do next?" The answer we are looking for is some version of, "The staff would say, 'That's OK you don't have to talk about it now. We can talk about it later if you want."

This role play is informative to me - it lets me know what kind of world that people with disabilities live in, how they see 'good' staff. I've had all sorts of responses to this question, "Put her in the side room," "Take supper away from him," "Lock him outside," "Don't let her use the phone," "Put her on the floor." Shocking, but a glimpse into how some staff use power in their relationship to those in care.

But the teenage woman with Down Syndrome that he gets to assist in the roleplay has clearly been taught that "politeness" and her need to be "a good girl" trumps any situation where she might be unhappy, dissatisfied or abused. She confides that she herself would never complain about someone treating her badly because that would be impolite. And she becomes afraid that she's been displeasing when Hingsburger points out she is working at cross-purposes with the basic message of the workshop and roleplay:

During the rest of the workshop she never again volunteered for a role play, to assist in any way. She just sat with her hands in her lap and she smiled at me. That pasted on Down Syndrome smile that I understood for the first time (really) had nothing to do with Down Syndrome it had to do with being down trodden. She was entirely 'nice' for the rest of the time we were together.

She left the workshop by coming up to me and apologizing again. "I'm a good girl," she said as she walked away from me.

This young woman had been taught the primary importance of not being troublesome, not needing, not complaining, being "happy" at all times, and not breaking the rules that cast her as the recipient of other people's good will. The pressure to please is relevant to feminist politics as well as the lessons of safety and autonomy that parents, teachers and guardians should consider for children, disabled or not. But this true example of the societal pressures brought to bear on developmentally disabled individuals -- and likely girls and women, in particular -- illustrates the complexities of the meaning of consent for those whom society implicitly denies the right to dissent.

When those of us without developmental, intellectual or cognitive disabilities take it upon ourselves to judge if others have the capacity to make decisions for themselves, what criteria are used? Do we foster their decision-making skills in the same way we might for nondisabled-but-developing minds of children that we plan to give full autonomy to eventually? Do we allow them to make mistakes and grow from them? Do we offer them a sense of self that is worthy of personal preferences, convictions and enough bodily autonomy to be safe from abuse they can recognize, or do we limit their available responses? Do we let the idea of their mental impairments limit our own sense of their personhood and the entitlements to all which that means?

How many people who have been trained, taught and brainwashed to believe that being considered "good" is more important than their own safety have subsequently been determined incapable of making their own decisions and incapable of consent?

Saturday Slumgullion #25

Peter Singer's op-ed on Ashley X: A Convenient Truth.

One story of ADA compliance failures and a school district in Charlottesville, NC.

Autistic students will be forced to testify, or at least take the witness stand, against their alleged abuser -- Kathleen Garrett, a special ed teacher, is charged with abuse that knocked out one child's teeth. Attila the Mom comments here.

A detailed article on the trials of getting employed -- Lawyers With Disabilities Say Obstacles, Stereotypes Persist.

Feministing interviews disability activist Laura Hershey.

Amanda of Ballastexistenz has a really great 8 minute video called In My Language, dedicated to Ashley X. I think it is fairly accessible to those with either sight or hearing impairments, she shows us through singing and rhythym how she communicates with her environment, and when she speaks using an electronic voice machine, she also provides subtitles. Update: Partial written transcript here. Discussion at Metafilter here.

The investigative reporting on conditions in Georgia state mental hospitals continues. An excerpt from part 3:

He was choked until his last breath. Blood pooled beneath his skin from two wounds to the back of his head. His body lay in an ignominious sprawl: facedown on the floor of a state psychiatric hospital.

Georgia's chief medical examiner ruled his death a homicide. So did a coroner's jury.

Yet no one ever faced criminal charges for killing Rickey Dean Wingo. No one was even disciplined.

In Georgia's state mental hospitals, even the most egregious cases involving employees — patient deaths, assaults, beatings — usually result in penalties no harsher than firing, and sometimes no punishment at all, an investigation by The Atlanta Journal-Constitution shows.

Mike Ervin writes on "15 years of ADA filled with setbacks, victories" for the Progressive Media Project.

Tiny Cat Pants comments on what I'm Funny Too has to say about liberals and disability issues.

Disability Carnival #7 is up at Penny's!

The theme is Disability History and Disability in the Arts, so rock on over and enjoy!

Flying rodents of unusual size

Last week, I described the pre-dinner events of my 20th birthday. And the banana balloon capture caper.

Dinner itself was fun too. Marian, Anne, Deb and I walked to the restaurant -- two scooters, a power wheelchair and one bi-ped skipping along to keep up. Traveling in a pack of wheelchairs over familiar sidewalk terrain is something of an art. The unspoken rule is that everyone paces themselves to the slowest chair (or the walker) but allows for speed changes and swerves around uneven pieces of pavement. In neighborhoods around campus where we were all familiar with the potholes and seizmic cracks in the sidewalks, a simple trip together somewhere sometimes felt like an intricate dance -- slowing, speeding, weaving sideways to avoid a crumbled edge of cement, zipping closer so we could keep up converation. We'd anticipate the sudden stop and lurch of each other's chairs to navigate smoothly. Well, mostly. There were collisions now and then.

I still didn't know where we were going for my surprise dinner, though briefly I expected it might be McDonald's because of the perverse humor of my friends. We ended up at Monty's in downtown Tempe. The main strip has changed a lot since those days, with many new restaurants beyond the means of the local students, but Monty's was one of the few fine-dining experiences within walking distance of the dorms back then, and I'd never been inside.

Possibly, the highlight of the evening was when Deb stepped up to the hostess and announced our arrival, then added "we'll just need one chair." Our little parade through the many rooms of the restaurant was fun, too. Oh, the expressions as we rolled by -- one, two chairs, three. The public spectacle of disability is always more fun when shared. To often it's experienced alone and feels alienating instead.

I had the famous barbeque ribs for dinner -- a splurge. And a bottle of wine, then Irish coffee with dessert. Yes, alcohol at a restaurant on my 20th birthday. I was the only one underage but sometimes gimpiness freaks servers out so much you don't get carded. There are perks now and then.

Anyway, dinner was delicious and I drove out of the place with a good buzz. We all did, which I suppose explains our detour under city hall on the way home. Tempe's city hall building is an impressive bit of architecture -- it's an inverted pyramid with large slabs of window covering the slanted sides. The "point" of the pyramid is underground and is reached by long fabulous ramps that go "WHEEEEEEE!" When drunk.

It was dark down there after-hours, which accentuated the sense of speed. Anne's scooter lacked the stiff automatic braking on slopes, and she shrieked with laughter. The buzz of our power chairs and voices echoed off locked office doors and through the leafy atrium under the building"s bulk. And there was another whirring screeching noise we couldn't identify as we raced up the ramp and plunged down it again. Deb leapt onto benches. More shrieking laughter. And that other whirring and shrieking.

'What is that?"

Marian gasped. "BATS!"

We'd disturbed their nighttime playground and they were swooping around us in the darkness. The echoing noise of our chairs frightened them, perhaps. Now we all shrieked in earnest, ducking instinctually, as we sped up the ramp and back into the sultry October night. As it turns out, scary bats are hilarious when you're drunk.

Back at the dorm, the room I shared with Marian had been toilet-papered extensively. I felt special. And that banana-shaped balloon was there for the upcoming adventure.

Things that crack me up, #17

Behind some Google searches, there is mystery. This search led here:

"maybe i needed 70 years of life to get ready for a woman like helen"

Various NPR disability stories

Label falls short for those with mental retardation by Joseph Shapiro. Excerpt:

The term mental retardation was supposed to be an improvement. But the fight over language keeps going on. That becomes clear if you ask those with mental retardation what they think about that description.

"I hate that word — mental retardation," says Thelma Greene of Washington, D.C. "I wish they would change that one, because it sounds so institutional, like you can't do nothing for yourself and you're depending on somebody else to do everything, from putting on all your clothes down to your shoes. And that's not right."

"Retardation is not the good word," Anthony Vessels, also of Washington, says in agreement.

"I never did like that word 'retardation' or 'mental retardation,' adds Victor Robinson. "Because everyone has called people names about that. And no, none of my friends did like that name or any other name, being called 'stupid, dumb.' And it hurts a person very much."

"Poster Child" Emily Rapp about her life and her book, Poster Child: A Memoir

A look at an autistic savant's brilliant mind from Talk of the Nation, about Daniel Tammet's memoir Born on a Blue Day.

Things that crack me up, #16

Well, not so much cracked up this time, as surprised by something I did not know:

Not only was John (Cougar) Mellencamp born with a mild form of spina bifida, but he was birthed in a windmill.

I know.

Jury duty update

My post from last September about being summoned for jury duty always gets a few Google hits per day, so I thought I'd provide an update.

I was required to call in to the courthouse once in October on a designated morning to see if I needed to come in that afternoon. The recorded message told me that my jury pool wasn't needed, but that I'd get another letter in the mail during my three-month on-call period if they needed me to check in again. That never happened, so presumably my brush with legal excitement has passed me by. That is all.

Radical Day of Fun

In preparation for my 20th birthday, my roommate and friend Marian warned me I was being taken out to dinner, so I should reserve that Saturday for mystery fun. Neither of us had any idea then that Marian would never get to wish me a happy 21st, so I'm doubly greatful my 20th was filled with such wacky fun.

Here's the conversation I had with Marian a couple days prior to the event:

Me: We're going out to dinner?

Marian: Mmm hmm.

Me: Where?

Marian: You don't get to know yet.

Me: Who's coming?

Marian: You, me, Anne and Deb.

Me: Is it a fancy place?

Marian: Ummm. Yup.

Me: Should I dress up?

Marian: I would.

Me: Should I wear hose?

Marian: God no! . . . Maybe when you get married.

***

When Saturday came, so had a package from my parents, and other friends came to hang out in the dorm room Marian and I shared while I opened that. This was the pre-party, and it was mellow but fun. It included the cake my parents arranged to be sent from a local bakery. Several people gave me toy or stuffed dinosaurs because of a misunderstanding that I was collecting them. The cutest ones remain with me as memories of those early years in college. Anne gave me a giant helium-filled banana-shaped balloon that said something about "bunches of fun."

Some days later the big banana's ribbon leash came loose and the balloon edged its way over to our oscillating fan. Afraid it would get sucked into the fan, Marian and I executed a rescue mission that sounds more like some bizarre drinking game, particularly since we decided on it while not entirely clothed. I forget what that part was all about.

Marian had a homemade "reacher" consisting of a dowel stick with an L-screw attached to one end. She skillfully used it to dress, run a washcloth over her face and dozens of other small tasks her juvenile rheumatoid arthritis made more difficult. Her stick was key to our banana-balloon rescue caper.

Here was the plan: If we turned the fan off, the balloon rose to the ceiling, completely out of our reach from our chairs. Turn the fan on and the big foil banana edged down behind the fan as though it might hurl itself into the whirling blades. One of us would drive up in front of the wind from the fan and bat the balloon downward and in front of the fan using Marian's stick. The challenge was then for that person to speedily reverse out of the way so the other could swoop in and reach for the balloon in the brief moment it dipped low enough to catch.

We were working with two electric wheelchairs (well, mine a scooter) and a dormroom floorspace of maybe ten-feet square, so half-naked, dowel-batting, chair-swooping and arm-lunging required teamwork and coordination not improved by giggling. I forget if we were sober or not, but in retrospect, probably not.

***

More on the birthday dinner itself tomorrow. I'm extending my radical fun through the weekend.

For other people's radical or drunken fun, check out the links at Sly Civilian.

Slumgullionish miscellanea (#24)

William Peace's "Protest from a bad cripple: The Ashley Treatment and the making of a pillow angel" in CounterPunch:

Doctors have established a precedent with Ashley—it is ethically and socially acceptable to mutilate the bodies of disabled people. What Ashley and her doctors have failed to grasp is that all disabled people share a common bond. In my opinion there is no difference between myself and Ashley despite the great disparity in our intellectual abilities. If you doubt this let me relay one story from my childhood. In 1972 I was a 7th grade student at a Catholic school in New York. The school was not unusual but I was. I had a rare neurological condition that was beginning to take its toll on my ability to walk. Shortly after school started I vividly recall homework being handed out and the nun came over to me and said, “You no longer need to do homework because you are one of God’s special children”.

A thorough collection of the disability community's responses to The Ashley Treatment.

From NewsDay, Sen. Charles Schumer (D), of New York talks about the special difficulties faced by injured National Guardsmen and Reservists:

Disability claims filed by National Guardsmen and Reservists are denied at twice the rate of active duty troops, he said. Guardsmen and reservists in college sent for full-time training earn just $297 per month, while active duty soldiers earn more than $1,000, he said.

In addition, wounded guardsmen and reservists often must recuperate at medical facilities far from home, he said. They are tied to units scattered throughout the country.

The Guard and Reserves have been used more in the Iraq War than in any prior conflict. At one point, half of the deployed troops in Iraq were with the Guard or Reserves.

"They are risking the same amount of danger," said Schumer (D-N.Y.) at a news conference at Hofstra University Monday, surrounded by cadets with the school's ROTC program. "They should be given the same benefits."

The South Dakota Argus Leader reports on the unusual motions filed in the murder trial of deaf defendant Daphne Wright:

The lawyers requested the victim's friends and family be prohibited by the court from acting out or displaying emotion during the trial. They also requested the court not allow "gruesome or inflammatory photographs" from the crime.

Wright, 43, is accused of kidnapping, killing and dismembering Darlene VanderGiesen, 42, in February 2006. Wright and VanderGiesen were both deaf, which has become an issue in the court proceedings.

Prosecutors have indicated they will seek the death penalty if Wright is convicted on the charges she faces: murder and kidnapping.

But Wright's lawyers say that because she is deaf, it would be cruel to execute her.

And to my Malaysian friend who sent me a link about disability news there, I have lost that email. Please resend the info and other news in the future.