Just so we're clear

These were hate crimes.

links via Echidne

Things that crack me up, #9

They're like square seaside wheelchair condoms.

Visual description: Two wheelchairs on a terrace overlooking the sea on a clear sunny day, but the wheelchairs are surrounded by box frames with clear plastic windows -- one frame is red, the other blue. The people inside are apparently enjoying the view.

Originally uploaded at Flickr by Mooganic

The saddest entourage ever

I've never seen the HBO series Entourage, but I know entourages are supposed to be cool. Hip. Impressive. They're supposed to help acquire stuff, and beautify the star, and enlarge the star's importance with their very presence.

Here at The Gimp Compound it's Parts Replacement Week. Today I went to the local clinic to have my trach swapped for a newer, less ooky one and Wednesday there will be drilling of teeth. Too bad the attendants can't be sent ahead to have their teeth drilled instead of mine. I would so go for that.

Yes, I have attendants. They're my folks and the state-paid nurses I've referred to before, and though a nurse is supposed to be here 24/7 as long as the state is paying for any care of a person with a vent, they're covering about 60% of the hours this month and my weary parents are handling the rest. Anyway, there's always someone lurking about me.

In the past I've brought my parents to many doctor's appointments -- particularly the specialists because 1) we all know the drill, 2) I feel more powerful with them there, and 3) we can remember things better if we all try together. In the hospital, especially when very helpless, it was really important they were around. I focused on not letting anyone accidentally injure or kill me, and my parents worried about other details. I don't know how anyone manages all that alone.

So. I have this nurse who goes where I go, and parents who have a knack for teamwork in the doctor-patient arena with me. All four of us went to the clinic together today for the trach change. And while there is good people-watching of all kinds there, I'm sure we are something to see. If you wandered into the nearest church lutefisk dinner and picked out two reasonably limber senior citizens and a women aged 35 or older, you'd have an idea of the utter coolness of my entourage. They carry gauze and saline. They wear comfortable shoes.

My entourage. My posse. My gang. My, uh, parents and my nurse.

No Bigger Than a Minute

Tuesday, October 3 -- that's tomorrow! -- on PBS' POV series, Steven Delano's documentary called "No Bigger Than a Minute" will air. (It's on at 10 p.m. here, check locally for the time where you are.)

From the film's synopsis:

"My name is Steven. I am 48 years old and I'm a dwarf." So begins Steven Delano's unusual new documentary, "No Bigger Than a Minute." What follows is neither an academic discourse on the life and times of America's "little people," nor a project in self-affirmation in the face of social discrimination — though the film includes healthy doses of both of these. "No Bigger Than a Minute" has tongue-in-cheek re-enactments, a music score structured after Delano's own mutated DNA sequence, short-statured Hollywood stars such as Peter Dinklage ("The Station Agent") and Meredith Eaton ("Family Law") and musicians, rappers, comedians, novelists, doctors and ordinary folk. Not to mention filmmaker Werner Herzog and an uneasy, and very funny, cameo by Randy Newman, singer-songwriter of the top ten hit, "Short People."

What really stirs this eclectic mix into potent form is Delano's own reluctant "star turn" at the film's center — a film he didn't originally envision appearing in at all. Delano's opening statement is both the culmination of one story, about what he'd learned of dwarfism after 40 years of ignoring it, and the beginning of a new story. It's this new story that thrusts him into his own film to delve into questions of humanity's treatment of difference, tensions between personal and group identities and the future evolution of these contradictions. It's here that Delano faces the most untidy dilemma of all: In the brave new world of genetic engineering, when it is conceivable that dwarfism can be bred out of human populations, is this what we want?

You may have noticed my imaginary boyfriend will be part of the film. He was on Nip/Tuck recently too, and his nanny-character made a little speech saying very disability rightish things. I do believe he could improve any seedy sexist drama he acted on. Any documentary too.

Something less creepy about former Rep. Foley

It's international news that the FBI is examining e-mails between former Republican Rep. Mark Foley and teenage Congressional pages. Democrats are calling for hearings, we're learning other Republicans knew of these e-mails for some time, and Bush denies having known anything until now (which, as usual, is either hard to believe or completely believable).

What you may not know about Foley is that he was the guy who repeatedly introduced the ADA Notification Act to the House, hoping to weaken the ADA by requiring disabled people to notify any business of noncompliance and then wait 90 days before seeking legal redress. Well, 90 days plus all this time since 1990 when the ADA was passed and businesses everywhere went on notice that they should figure out if they were meeting the standards of the law.

Kara Sheridan wrote in 2005 for Audacity magazine:

Under Foley’s sponsored act, our role as the sole enforcers of the ADA would expand even further to include properly notifying those that deny us basic access to their facility and then waiting to see what happens. It’s difficult to understand that more waiting after fifteen years is a solution to anyone’s problem. Mark Foley’s ADA Notification Act is blurred behind the mask of protecting the vulnerable people with disabilities from "shiesty lawyers" who seek to take advantage of small business owners.

This paternalistic attitude that we are somehow less capable of protecting ourselves compared to the average citizen is more evidence to Foley’s underlying principle that the burden upon small businesses to comply is more valuable to consider than our rights as equal citizens.

While he has definitely been briefed and is well practiced in using politically correct terms and carefully shying away from outright stating that he believes many ADA standards are not truly necessary and expensive trivialities, he still makes it clear with his statements in interviews with the media.

Instead of sharing the perspective of a person with a disability who has been denied access to any public place he/she wishes to go, Foley instead shares stories of those that file lawsuits against strip clubs or those that file complaints based on the difference of a few inches from the standard disabled parking place.

The Ragged Edge covered Foley's ADA Notification Act back in 2000 when Clint Eastwood helped spread disinformation at a Congressional hearing.

It's good reading, though not as juicy as the current Foley news.

A credo for support

Here's an excellent four-minute video made in memory of Tracy Latimer. It's not about Tracy Latimer, it's about disabled people in general and how to treat them. For those who need it, there's both audio and written text of the spoken words.

A video like this seems important after reading how many people commenting to my post "Is your life hard or super-hard?" by admitting they are hesitant or fearful around disabled people and aren't sure how to teach their children differently. These comments were mainly at Alas, I believe, and I don't think the people saying these things are unusual or any more ableist or self-conscious than the average person. Sad, but true.


Via The Belonging Initiative

Saturday Slumgullion #13

I love doing these slumgullions, but with the first Disability Blog Carnival coming up at Disability Studies, Temple U. I may focus here more on non-blog slumgullionish stuff. Or maybe there will be so much disability blogging I can gather the leftovers here. We'll see how it goes.

• Mark Boatman at Nodakwheeler had planned to escape the South Dakota nursing home he was stuck in (because of the state's lack of funding for in-home care) last May, but it didn't go as planned. Happily, he has recently made a successful break and is enjoying his freedom in Montana.

• In "Born that way," Third Culture Kid(s) makes a connection between racial outsiderness and being born with a disability.

• Neonatal Doc writes about the reasons prospective parents give (or tell themselves) when they decide to abort a fetus with birth defects. The comments are long and varied, as well. Via Grand Rounds 3.1

• Suzuki unveils prototype fuel cell electric wheelchair. Um, I think it looks like a uncomfortable tinker toy, but it is interesting.

• The online poetry journal Slope presents an American Sign Language Poetry Special Edition. Be sure to watch the video of "Flying Words." The poetry is pretty cool too.

• Lisa Ferris at A Letter to My Children tells the long and winding tale of making friends at a church when everyone seems uncomfortable with her disability:

People just wouldn't talk to me. It is one of those things that is hard to put your finger on. Like there are a thousand little ways that people disregard you. And if you looked at each one, you may not think it is a big deal, and some individuals may have even had a very legitimate excuse that has nothing to do with you, but when you put them all together over time...you can only conclude that a large number of people really don't have any interest in getting to know you. I asked people out for coffee and I got turned down every time. I would go up to people and talk and they would make a hasty exit. Once this woman came up and talked to me and I was fiddling around with my hearing aid from having been using the FM system. I said, "I'm sorry, my hearing aid wasn't working and I didn't get all that you said." She said, "So you just let me go on talking when you couldn't hear me?" I said I got the gist of what she said but I might have missed some things. She made a hasty exit and has never talked to me again. I have even said hi to her by name and she doesn't even say hi back. I used to go home from church after this stuff would happen again and again and just feel like crap. Part of it was just asking myself what I was doing wrong or that was so awful? If the Unitarian Universalist can't deal with me, who can?

• I'm eager to hear all kinds of opinions on this: "Right-wing disability" video.

• Pambazuka News covers the problems of sexual violence for disabled women in Kenya.

Crossposted at Alas, A Blog
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Jury duty

I've been called up for jury duty at the county court level. This is the second time in three years that this supposedly random process has chosen me, though my parents have never in their lives been called to serve. I was summoned twice in my 13 years in Arizona too.

Here's how it generally works: A summons in the mail notifies the recipient that she must serve unless she qualifies for specific exemptions. There's a questionnaire where she verifies she's a U.S. citizen, has never been charged with or convicted of a felony, and doesn't have a disability that would interfere with serving. To each she answers "yes" or "no." "Yes" to the question about disability requires verification by a doctor, of course.

Every time (four times now), I've answered the disability question with a write-in of "maybe." Is there reliable public transit to get a person with a wheelchair to the courthouse? Is the courthouse wheelchair accessible? Are the courtroom, the jury box, and the restrooms that the jurors use accessible too? Will my personal attendant or nurse remain available to me? Will I be treated respectfully if I need accommodations not immediately available? I figure I'm not the wildcard in this equation.

Marta Russell, author of Beyond Ramps: Disability at the End of the Social Contract, wrote about her summons to jury duty in 2002. After some adventures with parking, elevator access, and building security, it was time for a little ableist attitude from a jury administrator:

Those of us who have been using wheelchairs for some time know the routine. No matter where you choose to place yourself you will be told that you are in the way and asked to move. It took about ten minutes but an administrator was soon by my side telling me I was blocking traffic and suggested that I "move over there" pointing to a table against the opposite wall.

There were people using that table to fill out forms so I mentioned that I would be in the way there too. Why is it that some people do not like to be "upped" by a person using a wheelchair? She certainly did not like it and denied that there was anyone using the table even though three persons were in plain sight at the table at that very moment!

As I went towards the table she went over and grabbed the table, then dragged it off into another area. Plainly agitated she came back over to me and asked in a patronizing tone "Is that enough room?"

My wheelchair is about 26 inches wide, the table was about 5 feet long. Agitated myself, I retorted that if the room had been designed to accommodate a wheelchair and had integrated seating, she would not be having this problem now, would she?

Russell's experience is hardly the most dramatic. George Lane, of the Supreme Court case Tennessee v. Lane, had once crawled out of his wheelchair and up a flight of stairs to reach a second-floor courtroom in Tennessee. When he refused to repeat the process on a different day, he was arrested for failure to appear. (Tennessee v. Lane, itself, is about whether or not a plaintiff can sue a state for damages under the ADA's Title II.)

Lane was a defendant in a criminal case, but access issues remain the same. Well, if fact, it's even more important that a defendant be able to attend his own trial, isn't it?

As for me, my "maybe" means I made it through that initial screening and must wait for my notice of what day I phone the courthouse. At that point, my jury pool group may or may not be required to come to the courthouse that day. I'm on call for this process through the end of 2006.

I could have opted out easily, I believe. There's the chance that writing "I use a ventilator" instead of "maybe," or "state-paid nurse will accompany me" would have been enough to get me passed over, but I'm interested in the process, if a little jaded about how welcome I might be to participate.

Being accepted onto a jury would considerably complicate this life I'm starting to adjust to, but I'm following through. Why exactly? First, there's nothing about my disability that interferes with my ability to make judgments in a courtroom even though there's a presumption in the disability question that I will be a problem citizen. I come with hired staff to help me. I should be good enough if they look at me with an open mind, eh?

And second, since a doctor's note to opt out (assuming I needed to) can cost an office visit and money to acquire, there's an inequality to the initial screening that I object to. Receiving a summons in the mail does not cost most people anything (at the initial stage -- salary loss is a whole other thing), they should be fully prepared to accommodate me when I show up. And fairly assess me like everyone else.

Crossposted at Alas, A Blog
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Things that crack me up, #8

It's a little hard to read, but the bronzed plaque on the wall of the building, just beyond the universal disable access sign reads "Walkers Funeral Home."

Originally uploaded at Flickr by Out of Ideas

Disability Blog Carnival begins

Penny Richards at Disability Studies, Temple, U., has decided it's time for the Disability Blog Carnival to begin. She's been posting monthly crip blog roundups, and the last one was both amazing and impressively long. And remember Goldfish's Blog Against Disablism Day? That one-time event ended up involving well over one hundred bloggers. So I think this is long overdue.

Generally, the carnival will be about disability, disability studies, and disability rights. Hopefully, people from a variety of backgrounds and disability experiences will jump in to participate.

The first carnival will be held on Thursday, October 12 at Disability Studies, Temple U. Deadline for submissions is Monday, October 9. It's already been noted that submission through the blog carnival site is problematic for those using screen-readers because of the CAPTCHA thingy, so contact Penny at her site to submit or ask further questions. Or to host a future carnival.

I'm hosting the following one, October 26, at The Gimp Parade, and I'll be posting details soon about that.


Crossposted at Alas, A Blog
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Feminine products denied to disabled women in nursing homes and other institutions; Forced medication to minimize menstruation

From a notice on a disability listserv:

I am forwarding this on behalf of Feminist Response in Disability Activism (FRIDA), a newly established feminist disability rights organization based in Chicago, founded by a collective of highly skilled and committed disability rights community organizers.

On August 3, 2006, F.R.I.D.A (Feminist Response in Disability Activism) held a Town Hall meeting in Chicago for women with disabilities. One of the issues that emerged from the Town Hall was the fact that many women with disabilities living in nursing homes and institutions are:

1. Not provided with pads and tampons (even though this is required by federal regulations mandating that nursing homes provide certain supplies for residents on Medicaid or Medicare, including sanitary napkins and related supplies);

2. Told they have to buy pads and tampons out of the $30 they receive monthly from their SSI allowance (yep, the rest of their money - $603/month – goes to the nursing home and institution);

3. Not allowed to leave the facility to purchase the pads and tampons due to a “level policy” recently instituted in many Chicago nursing homes that prohibits residents from going on “family visits or independent passes” unless several strict requirements are met; and

4. As a result, some nursing home/institution staff are forcibly suppressing the periods of women with disabilities through continual DepoProvera and other methods so staff don’t have to “deal with the mess.”

DOES THIS INFURIATE YOU?

It should! Access to feminine products is a fundamental aspect of reproductive choice!

WANNA DO SOMETHING ABOUT IT?
THEN JOIN THE PAD PATROL/TAMPONS FOR JUSTICE PROJECT!
SEND US YOUR TAMPONS AND PADS!

You can help by donating a box of pads or tampons to the F.R.I.D.A. Pad Patrol. We will make sure the items get into the hands of the women with disabilities who need them.

FRIDA can also take checks or cash to pay for these items; checks should be made out to FRIDA with a note for "pads and tampons".

Send your pads/tampons to:

F.R.I.D.A. Pad Patrol Distribution Center
C/o Sarah Triano, Access Living
614 W. Roosevelt Road
Chicago, IL 60607

Know a woman with a disability who is being denied access to pads/tampons? Then send her our way and we’ll set her up!

At the FRIDA website, they explain why this isn't simply a matter to be put to legal action:

In response to some questions about the Pad Patrol, FRIDA is fully aware that in cases where nursing homes or institutions fail to provide sanitary napkins as dictated by federal law, legal recourse is necessary in case where informal negotiation is not successful. We are in full agreement that systemic change is the only way to ensure long term justice. We do, however, feel that systemic change can be achieved on multiple levels. Some folks have asked whether, in distributing sanitary napkins and tampons to nursing homes, we would enable the nursing homes to continue evading the law.

Our viewpoint is as follows... First, in conducting outreach for a pad drive (which has reached as far as Australia) we are exposing a problem in a system, a problem that many feel a personal connection to. Anyone would be shocked by the idea that someone would have to blow their whole allowance on sanitary napkins or else sit in a crust of their own blood. Add to that the fact that showers are often regulated and you must bathe on a schedule. Sometimes, by relating to something so graphically everyday, we can push awareness of the problem to a critical mass of public opinion.

Second, the larger problem beyond the lack of sanitary napkins and the suppression of periods is the entire system of nursing homes and institutions in which so many people with disabilities become trapped. While the average person will be shocked by the pad issue, they will hopefully also learn a little to care about the wider problems of institutionalization. FRIDA feels, as does ADAPT and many other groups, that we would much prefer to live in our own homes with community supports for our needs, rather than in nursing homes, institutions or group homes. In the end, we see that a feminist issue is really a human issue.

Third, and maybe most pragmatically, the woman who is having her period in 3 days cannot wait for a lawsuit to be settled in five years. There is a final question which FRIDA needs to answer to the public, and that is whether this problem really exists, and whether there are women who are willing to speak out about this issue. There are in fact such women but at this time their identities are protected by confidentiality. FRIDA is working to identify women who are willing to speak out. If you or someone you know is willing to testify and let people know what's really going on with women's rights in nursing homes and institutions, get in touch....

More contact information available at the FRIDA site.

Crossposted at Alas, A Blog
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"Is your life hard or super-hard?"

My aunt and uncle visited from Wyoming today and I showed them the drawings and pictures their daughter's third-grade students sent me last Spring. There are two series of letters since I replied once and then they all wrote back, practicing their cursive and sharing weird stories, silly jokes, and curiosity about my life. Most of the letters begin "Dear Cousin Kay," which is sweet and cracks me up.

To their first set of questions, I explained how I get help with dressing and using the toilet. I answered questions about my favorite sport, team, color, children's book and all that. Also, that's what my self-portrait was all about. My favorite poem of the many the kids sent was this one by Gunnar:

Roses are red,
violets are blue,
I bet anyone would take a bullet for you.

Scary, yet sweet, right?

I replied to every disability-related question they posed and their second set of letters showed more curiosity.

"How do you get the tube down your throat?"

"How do you get into your scooter?"

"Did you know some electric chairs are run by movements of eyeballs?"

And this one:

"Is your life hard or super-hard?"

For some reason, that last always makes me think of this lovely little encounter I had in a grocery store in Tempe, Arizona, years ago. I was just a couple blocks from my apartment, shopping early so the short ride home in the heat wouldn't spoil anything, when a woman stepped toward me.

She had a little girl with her, about three, and the mother said, "Excuse me, do you mind if I take a moment with you to explain to my daughter about your scooter? She's curious about it."

The girl stood shyly nearby, trading wide-eyed looks with me.

"Um, okay."

The woman squatted so we were all about the same height, tapped a finger very gently on the top edge of the metal basket that hangs at the front of my scooter, and told her daughter how some people don't use their legs or need to sit when they're tired but still have things to do. She noted that the scooter was a very good thing because it helped me get around.

It was a very brief encounter. The mother didn't intrude further by asking me to answer questions or explain about myself. She let her daughter look for a heartbeat or two, we traded smiles all around, then she thanked me and we all moved on. The little girl looked back at me a few times, then they were gone.

This one encounter stands opposed to the dozens and dozens where I've heard a parent shush a child's question or cover their pointing finger as they want to know what the deal is with me. Those parents ducked their heads in embarrassment, or a few gave me a "sorry about that" smile. All left the impression that I should not be talked about or approached.

"Is your life hard or super-hard?"

I have no idea how to answer that simply. I'd never say "super-hard," though to be fair, I know at least one family member who would say "super-hard" because of their relationship to me. But somehow I love the question. Maybe because by itself it says so much.


Crossposted at Alas, A Blog
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On-going blogroll changes

I'm in the process of changing my blogroll, mostly because my bookmarks are out of control and I lost them all recently so I want to use my blogroll to keep current fascinations handy. But also because I keep finding new disability bloggers who are saying interesting stuff.

My categorization is a pretty fuzzy division of gimp bloggers and other people. The former is only used for people claiming disability as a part of their lives and writing more about it than their med changes. That is, they comment on the social experience of disability. If disability doesn't appear to be a focus of their blog and I still wanted to list them, they are in the latter category, as are some parents of disabled children who may write eloquently about disability experiences but don't claim the identity for themselves.

Some links are only on the blogroll for me. I'm still updating. Please let me know if there are errors to correct.

Famous crips and disability rights

Looking back at the disability press and its coverage of the FDR Memorial and Chris Reeve's post-injury politics, there's clearly a different perspective of these famous disabled men than the mainstream media presents. The topic of stereotypical representation of disability by the media and newly-disabled celebrities themselves rather than news about disability rights ignites activists to raise their voices. Each of the following links (save, perhaps, the last one) are worth reading in their entirety.

FDR

After the FDR Memorial in Washington, D.C., had been unveiled, there was an outcry from disability organizations that the wheelchair Roosevelt used daily all through his presidency was nowhere visible. A 1997 article in Ragged Edge (then called Electric Edge online, since the 'zine-like print version of Disability Rag was still available) questions "FDR: Rolling in his grave?" :

The controversy among crips is this: Is it great that NOD [National Organization on Disability] is calling Roosevelt a hero for crips, and using him as what one person called a "'culture icon"? Or is it misplaced praise for a man who really went to great efforts to pass as non-disabled?

"It is important to Americans with disabilities -- and important as a symbol of how American society perceives its disabled people --that the Memorial depict the man as he was: tall, strong, heroic and disabled. Don't let them steal our hero!" Hugh Gallagher, author of FDR's Splendid Deception, has said. He has been liberally quoted by supporters of the NOD campaign.

[Blind reporter Kathi] Wolfe worries that the effort to turn Roosevelt into "a crip icon just because he was a crip" contradicts history. "He wasn't a disability hero," she insists. He wasn't "a crip advocate like Helen Keller, who worked to better conditions for blind and deaf-blind people and veterans who had disabilities -- as well as being a feminist and against racism."

Here's the Congressional hoopla that led to adding a statue to the Memorial depicting Roosevelt in his wheelchair. It was a rare triumph that the voices of disabled people were heard and effected change, though likely the biggest reason for their success was Roosevelt's political history of serving oppressed minorities. That aspect of his personal history tipped the scale to support people with disabilities.

Chris Reeve

Along with instantly becoming the most famous, most quoted disabled person on the planet, Chris Reeve was always a lightning rod for political controversy and frustration among disability activists.

In letters to the editor of Electric Edge, readers vent about Reeve:

Due to his high profile, it's no surprise that much ink is devoted to Christopher Reeve. Our world has collided with that of an A-list celebrity in a way that we could never have anticipated, so it is inevitable that we react to him in the Rag, Mouth, Accent, and all of our other usual forums.

Readers themselves may have witnessed or experienced firsthand the myriad thoughts and emotions in the two or three years immediately following such a massively imposed change as is caused by a spinal cord injury. In the clinical model, there are textbook pages written about a pattern of denial, anger, and depression. Christopher Reeve is, so far, the most powerful, influential person to go through this experience. All his talk of The Cure is nothing new; convert gimps have been singing this tune for years. His use of this crap is now drawing the attention it craves because he's the one saying it. We're all horrified because he can undermine the life work of hundreds of advocates in just one speech.

Writing about her 1996 experiences as a South Carolina delegate at the DNC, Harriet McBryde Johnson was on the floor when Reeve addressed the Convention:

They've been building up to tonight's major prime-time speaker, and now they're introducing him: Christopher Reeve. When the introduction ends, the hall lights are dimmed. Onto the stage he rolls and then sits, gleaming under a dramatic spotlight. The crowd is on its feet, wild with welcome, with excitement, with awe. Yes. They're awed by the mere sight of this man sitting, smiling, looking around. He hasn't said a word and they're going crazy. It's real. There's no prompting from the DNC staffers.

I'm in the middle of 60,000 drop-jawed souls, witness to a late 20th-century Pentecost. Physically, Reeve is way above the 60,000, isolated by that spotlight. Symbolically, he's the object of devotion, not a member of the fellowship. As Reeve and the crowd are having their communion, I feel completely out of it.

He's speaking now. I try to listen, but things have become surreal. I look up at Reeve.

I look up and I see ... a ventriloquist's dummy.

How could I think such a thing? I'm horrified. If these worshippers knew my thoughts, they'd tear me up and throw me to the dogs.

I tell myself Reeve's playing out the very peculiar drama of his life the best way he knows how. He's being used, but what can he do? This is a new role for him. He has no script.

But, there he is, Charlie McCarthy.

Where is this image coming from? No quad I've ever known has impressed me this way. I'm pretty quad-like myself. Maybe it's the staging that objectifies him. Or maybe it's the contrast between his persona and the physical vigor we expect on the podium of a national political convention.

No. It's the face. That smile running from ear to ear. The face is commonly considered animated, but I see something ... wooden.

I'm warmed by the sudden sunburst of TV lights; a camera crew is setting up. They want the crip reaction to Reeve's speech.

"Beth, can you block me?"

She stands between me and the camera. The crew establishes a new sightline and she leans right into it. They call someone on their cell phones.

Reeve's measured syllables are perfectly timed with his mechanical puffs of air. The pauses make what he's saying seem important. Even in the dim lights I can see the faces in the crowd, transfixed by the sight of him, fascinated by the sound of him. The gleaming presence. The ventilator whoosh. The body propped up in dress-up clothes.

The camera crew realizes that Beth's not going away. They load up their gear and head elsewhere.

Moments later, there's a woman in a wheelchair on the giant TV screen in the rafters. She's scowling. Quick cut to a nondisabled white woman, tears streaming across a smiling face, backlit to highlight her moment of inspiration. The lights pick out a variety of delegates. White, black, old, young, male, female. Everything but crips.

It's melodrama. The kind of Telethon melodrama I tried to ignore in my childhood and youth, tried to ignore until finally I got angry enough to put up a picket line. How could they bring the Telethon here, to a national political convention? This is my party. How could they do it?

The speech ends and the lights come on. As emotion runs through this vast arena, I'm left cold. I can't possibly feel what they feel. Now they'll want to see me the way they see Reeve, a disability object, presumably tragic but brave, someone to make them grateful they're not like us.

I tell myself I'm overreacting, but I'm almost shaking when I join the line at the elevators. A misty-eyed stranger kneels down beside me and clutches the hand I'm trying to drive my chair with.

"Wasn't that just wonderful?"

"No," I blurt out, "it wasn't at all wonderful. I thought it was pretty bad."

"Well, I thought it was wonderful." She springs up and pivots away with an angry shoe-clop on the hard floor. How dare I refuse to be inspired?

On the bus ride back, everyone rhapsodizes about how inspired they are. Gone is the usual friendly chitchat. I stare at the black floor mat and withdraw from the group that has set me apart.

We get to our rooms, way past ready to collapse into our beds, but there's a blinking light on our phone. A message from Mike Ervin: "Hi. Some people from Chicago are having a press conference tomorrow to deal with the Christopher Reeve, er, problem ... "

Beth writes down the details. We'll be there.

Continuing in Part II, Johnson describes the disability rights media response:

Christopher Reeve's speech has left us with a problem. By putting him up on the podium the way they did last night, the DNC has fed--and fed upon--the harmful disability stereotypes I'm here, in part, to fight. When I arrive for the disability caucus and find the gang from Chicago outside the door passing out flyers, I'm overjoyed. The flyer, by Mike Ervin and Anna Stonum, deals pointedly with Reeve.

Local TV news shows up. They shoot video of the group and then zoom in on my red delegate badge, proof of my authenticity as a genuine Democrat from the Deep South. Up here, I guess, I'm exotic. They set up lights. Mike and I agree to talk.

There's a lot of noise and I can barely hear what Mike's saying. Is he really calling Reeve a whiner? No, not exactly, but close. I think Mike might be going a bit too far, but a wave of gratitude washes over me. He's a champion who's fighting not Reeve but the people who put him on that platform.

Another 1997 Electric Edge article asks about Chris Reeve "What's it gonna take?" Here's writer Pat Williams:

Some gimps I know say, "give Chris Reeve a break! He's new to gimpdom. He doesn't realize there's more than Cure out there." These gimps want to believe that after Reeve's been a gimp for a few years, he'll get on to disability rights; he'll speak out on the importance of access, attendant services, all that.

But I don't buy that. I think Reeve knows exactly what he's doing. He knows you can't talk about cure on the one hand and access on the other; he knows people see them as contradictory. He was drawn to the American Paralysis Association, he said, because "they are dedicated solely to finding a cure for paralysis, nothing less. I liked that idea," Reeve went on. "They're not into lower sidewalks and better wheelchairs."

"Suppose Chris Reeve were Barney Frank":

Suppose he wrote an autobiography about seeking a cure for his homosexuality? Suppose he started the Barney Frank foundation to cure homosexuals? Suppose he held a television special to raise money to find a cure for homosexuality?

Suppose Barbara Walters interviewed him on 20/20 on his work to find a cure for homosexuality?

Imagine it.

A 2000 Ragged Edge response to Reeve's Superbowl ad where a digitally manipulated Reeve got out of his wheelchair and walked:

With an unemployment rate of over 70%, the vast majority of people with disabilities could not begin to be considered consumers of this product. But the ad was not created with the disability market in mind; its target was people with money. It unabashedly pulled at heartstrings with an in-your-face, no-holds-barred "disability is bad" message. In the tradition of Jerry Lewis, this ad meant to bring tears to the eyes of football fans during their favorite game, courtesy of the incredibly courageous former Superman.

The ad may have done more damage than Jerry himself: unlike the telethon, this "disability is bad" message aired during one of the year's most watched TV events. Nuveen paid $4 million for that minute of airtime.

At the same link, several disability activists speak out. Paul Longmore:

"The opportunities in this new world for people with disabilities have not been created by technology alone. They are the result of several generations of intensifying disability rights activism that has won passage of laws protecting us from discrimination and guaranteeing us access. . . . We need to ask why society keeps giving Reeve platforms to propagate his views but excludes the disability rights perspective."

Tom Deniston of Accessible Design Associates:

"If I had pulled a Christopher Reeve 30 years ago, none of at least 1,000 buildings would be accessible today."

Charles Krauthammer:

"In Reeve's view, reality is a psychological crutch. His propaganda to that effect undermines those -- particularly the young and newly injured -- who are struggling to face reality, master it and make a life for themselves from their wheelchairs."

New Mobility editor Barry Corbet writes:

Alas, poor Christopher Reeve. He can do no right.

In his quest for cure, he's been roundly criticized by a large and vocal sector of disability activists for obscuring our core message of rights, equal opportunity and dignity.

Alas, poor Christopher Reeve. He can do no wrong.

In his quest for cure, he's raised millions of dollars for research, elevated public awareness for all people with disabilities and brought hope where once there was none. He's become Saint Christopher and there's not much his detractors can do about it.

Ted Gilmer's 2002 New Mobility interview with Reeve presents a detailed picture of the man and his advocacy while also subtly showing how alienated he is from the average quadriplegic's life.

In 2003, Mary Johnson's book Make Them Go Away: Clint Eastwood, Christopher Reeve and the Case Against Disability Rights explains how Reeve's efforts dangerously undermine disability rights.

In a less critical 2004 article about his death Ragged Edge editor Mary Johnson notes:

We are awaking today to a week in which we will read and hear all sorts of encomiums to Christopher Reeve the actor, the brave man who kept on in the face of tragedy, the man who became an icon for stem cell research.

What we will not hear are tributes to the man who changed America's understanding of disability discrimination, who put a face on the problems this country causes wheelchair users by the persistent denials of access and accommodation.

Had he lived, Chris Reeve might one day still have come to symbolize to the American public the fight millions of us must wage in order to get out of institutions, into homes of our own, into jobs, into the public environment. Many of us wanted to believe he would someday embrace the rights issue much as he had embraced, as a nondisabled man, many progressive causes.

I've been getting a lot of heat for daring to criticize Andrea Dworkin's public writing about disability. Thinking critically about who the widely disparate disabled are and how we're portrayed isn't something I decided to play at just to "slam Dworkin." I didn't have a blog during the FDR Memorial issue or until the very end Chris Reeve's life, but I did write a letter to the editor of my college paper about the Memorial:

This letter is in response to the Tuesday State Press editorial stating that FDR should be remembered for his deeds, not his disability. While this newspaper has certainly made more blatant errors recently with regard to group stereotypes, the editorial speaks to the lack of support for diverse groups and their experiences.

It was widely known during Roosevelt's time in office that he used a wheelchair, and buildings all over Washington were equipped with ramps so he could come and go. These ramps were all removed when he died, attesting to the fact that because his disability was hidden, the access needs of other disabled Americans remained unacknowledged for a couple more decades. No, Roosevelt did not want himself portrayed in a wheelchair, but neither did he want any kind of memorial in his honor. We already have the memorial; now the challenge is to depict Roosevelt honestly and in a way meaningful for future generations.

The history and experiences of other stereotyped and marginalized groups have not emerged without struggle. Recognition of both contributions to society and discrimination from society have been hard won for African Americans, Native Americans, women, gays and lesbians, etc. While the editorial board acknowledged that people with disabilities are often pitied and patronized, they fail to truly examine Roosevelt as a president with a disability. He chose to hide his disability because of discriminatory attitudes. As President Clinton has said: "He knew it was necessary at the time because he knew he had the capacity to be president, and he didn't want some artificial perception to keep him from being president."

In addition to Clinton, former Presidents Bush, Carter, and Ford -- as well as 16 of Roosevelt's grandchildren -- support a statue depicting him in a wheelchair. History does not change, but what we see as important about our past continues to evolve. Who our heroes and role models are for the future has thankfully expanded. As the editorial states, "FDR was an inspiration to many," but perhaps not "regardless of his physical state." Perhaps his experiences with polio are part of why he was so great, and why he could say "We have nothing to fear but fear itself."

Incidentally, the new statue would not cost taxpayers a dime. The National Organization on Disability has pledged to raised the necessary funds.

And Reeve is mentioned anecdotally throughout this blog.

There aren't many famous disabled people because disabled people don't get enough media coverage to be recognized as the political activists and political writers they are. It ends up being famous people who become impaired and thrust into a brighter spotlight that society views as our spokespeople -- mostly spokesmen. Without criticism of their unwitting role in our continued oppression, their stereotypical messages go unchallenged. It's not enough to critique the media when the public turns to these celebrities, the roles of the celebrities must be examined too.

Crossposted on Alas, A Blog
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Saturday Slumgullion #12

• "Pimp my gimp." Recent Doonesbury strips showing B.D.'s efforts to decorate his prosthetic leg are the latest in good crip giggles.

• Sage of Persephone's Box has an announcement about blog color choices and the her ability to read what is offered. While we're on the topic, I can't remember who posted on it recently, but the CAPTCHA function for spam-proofing comments at many sites is troublesome for many of the sight-impaired. I've turned mine off and so far the spam on my little site is only about 2 per day.

• Dan Filler at Concurring Opinions has some legal thoughts on "Mental Illness and the Death Penalty," followed by interesting comments.

• The Independent has an article on toxic garbage from Western nations poisoning West Africa:

All down the West Africa coast, ships registered in America and Europe unload containers filled with old computers, slops, and used medical equipment. Scrap merchants, corrupt politicians and underpaid civil servants take charge of this rubbish and, for a few dollars, will dump them off coastlines and on landfill sites.

• Another article in the same edition tells of the daily struggles of African women and how sexism and ableism work together to make life hard:

An HIV-positive woman is nearly 10 times as likely to experience violence at the hands of her partner as a woman who does not have the disease. Domestic violence causes more deaths and disability among women aged 15 to 44 worldwide than cancer, malaria, traffic accidents and war. In at least 20 African countries, more than half the women have also suffered female genital mutilation.

• The founder of a Swiss clinic offering assisted suicide for the terminally ill wants to widen the scope of elligible people to those who are depressed.

He claimed that such a move would help to cut the suicide rate to about 20 per cent to 25 per cent of its current level. “You could avoid the huge majority and reduce costs to the health services,” he said.

Apparently, if someone commits your suicide for you, it isn't legally suicide. (True, btw. This also means family can cash in on insurance policytaken out on the dead person.)

• Lingual Tremors presents the impressive 23rd Carnival of Feminists on the theme of women and health care.

• A visually-impaired Atlantic City man sues the city and the "senior-transportation service" (I'm not sure why they call it that and not just paratransit like everyone else) because the driver arriving to pick him up in July, 2004, refused to let his guide dog on the bus. She was afraid of dogs.

• A respiratory disease called "popcorn lung" plagues workers in American factories where a chemical in artificial butter flavor is used on microwave popcorn.

• Some interesting Finnish blogs I can't find a good page translator for. Anyone?
  

• Lene Andersen at The Seated View thinks about self-image versus objectivity and the words -- like "deformity" -- that can cut.

• Time magazine's feature story, "Who pays for special ed?" begs for some disability blogging by those with more expertise than me on the squeeze between parents of disabled children and school districts feeling a desperate budget crunch.

• Larry Scott writes about the Republican plan for "Buying-out Disabled Veterans" with a lump-sum disability compensation and all the questions that brings up about eligibility for medical care through the VA.

• "The Meaning of Deafness" discusses education for deaf students and the conflicting philosophies parents of young children must chose between.

• Rochelle Gregory at Points of Praxis looks at the documentary Autism Everyday, the purpose the film is meant to serve and the disability rights critique of it.

Crossposted at Alas, A Blog
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Andrea Dworkin on disability

I don't know what the feminist reaction to this post will be, but it won't get out of my head, so I had to write it out. I'm interested to hear.

I'm not a big personal fan of Andrea Dworkin's writing, but I appreciate her contributions to feminism and her work as a radical thinker. When she died in April, 2005, I read a couple dozen obituaries and blog posts that celebrated her life and learned more about who she was as a woman and activist. The Guardian released "Through the Pain Barrier," reportedly her last piece of writing, completed just a month before her death. I was excited to hear that the topic was her experience with disability, and I couldn't wait to see what the woman whose writing and speaking style had been described as "apocalyptic" might say about disability and civil rights.

I was disappointed.

Her account of her osteoarthritis, double-knee replacement and the years of troubled rehabilitation and pain afterward is deeply personal, as is typical of many Dworkin essays. She begins by blaming her osteoarthritis on a 1999 rape in a Paris hotel.

Doctors tell me that there is no medical truth to my notion that the rape caused this sickness or what happened after it. I believe I am right: it was the rape. They don't know because they have never looked.

I do believe horrific experiences and emotional pain can contribute significantly to a person's health, but I wince at the general notion that a common condition needs to be attributed to personal crises. Impairments happen. God doesn't cause them and they exist without need for any form of moral explanation, whether it blames the person or makes them a victim of someone else's moral flaws. Needless to say, I'm uncomfortable with the way Dworkin begins.

Dworkin's treatment for her worsening knees follows what I understand to be a typical pattern of drugs, cortisone shots and finally knee replacement surgery. I don't envy her or the senior citizens I know who've had this treatment or are in the midst of it. Despite various setbacks, the people I know personally who have been through this recovered their mobility after the surgeries, though they did experience the basics of what Dworkin describes rather dramatically here:

I still don't know what he did to me but I came to the conclusion that the operation was barbaric, involving as it did the sawing out of the arthritis, which meant sawing through bones. It was like being kneecapped, twice, or having one's knees and bones hammered and broken into bits. After the operation I was in a nightmare of narcotics and untouchable pain. There were morphine shots. I asked for them and got them often. Even morphine shots in the upper arm hurt.

I had a hallucination but it is still real as rain to me. I was in Virginia Woolf's house and I was happy. But "they" wanted me to go down the stairs. I can't, I begged, I can't. My hospital bed was at the top of the stairs and I was afraid that they were going to push me down. I saw the steep decline of the steps. I couldn't get over my visceral fear of falling or being pushed or being turned over from the bed down the flight of steps. I kept experiencing my bed as being on the edge of a precipice.

I agree that the operation seems "barbaric" and thinking about it gives me the willies, but I dislike how Dworkin makes these personal experiences of a common procedure out to be extraordinary. All serious surgeries cause pain, and heavy-duty painkillers do cause hallucinations. I violently beat up a sock puppet in one fentanyl-induced hallucination last November for reasons I can't explain. After back surgery at age 16, I imagined my hospital bed was in a basement hallway and I'd been abandoned there. It took repeated reassurances from nurses and my hospital roommate to convince me I was safe and stop me from hollering for help. My grandmother saw spiders all over the walls once. These hallucinations are normal, though as individual as dreams, and are not proof of anyone's suffering or victimization.

I relate well to Dworkin's descriptions of physical and occupational rehabilitation, including the weird and often purposeless tasks required in OT:

Rehabilitation also includes so-called occupational therapy: throw a ball around in a circle; put round pegs in round holes; stand up, arms on a table, and read a page of a magazine; water a plant; play checkers or cards; and the piece de resistance, cook and serve a simple meal.

And the sexism she notes of caregiver expectations upon returning home I saw, as well:

On discharge, social services are provided. My male partner is not expected to be a care-giver.

I have no experience of the "pain management centres" she describes, but they do sound tedious. I'm simply stunned by the potent mix of painkillers she says they kept her on.

Curly eventually puts me on Percocet, fentanyl patches and methadone. I am on these drugs for nearly two years. I become slightly indifferent to the awful pain. My speech slurs and my memory is impaired.

Fentanyl is dangerous for any length of time, I was told. The patches Dworkin used prompted an FDA advisory in 2005. I was weaned from fentanyl injections after a few weeks in ICU and I missed it terribly at first. You may recall fentanyl was the painkiller mixed with heroin or cocaine that was responsible for dozens of deaths this past spring.

Dworkin's three-story New York residence disturbs me greatly. Not that she didn't move somewhere more accessible -- I know how difficult that can be. But did she really spend years crawling up and down three floors of steps between kitchen, bathroom and shower? I find that intolerable, and either unbelievable or lacking in creativity or... something. Adapt, Andrea. Adapt! Bathe in the kitchen or pee in the shower or something. Spare yourself some pain. If there are any triumphs of adaptation Dworkin does discover for herself, she never mentions them.

I remain ambivalent about the descriptions of her leg braces and the humor and pathos there. It doesn't seem as though she accepts her body for what it is, and I had hoped for more from the woman who made no accommodations to expectations of feminine beauty or style. Depression rules her state of mind:

I can't bear it or accept it. I reject the extent of my disability. I find myself in a silent rage that stretches over weeks. I am utterly exhausted by my incapacity. I am worn out from walking. I am sick of physical therapy.

She lacks perspective on what a "little humiliation" is too:

I keynote a conference on the Holocaust. The organiser picks me up. She is driving a truck. I try to climb up into it. She physically pushes me under my ass without permission, all the while talking to me in baby talk, put your tooshie there, keep your cute little fanny there. I turn to her and say, I am disabled, not stupid. A friend throws a party for me in Washington. I ask how many steps there are to the apartment. He doesn't know. I assume he will get back to me. John and I go to the party. There are three flights of steps. I can't get to the party being given for me. We could have given it in another venue, the friend says the next day. It cuts. I go to a bar and need to use the rest room. The men's is filthy, the bartender says; the women's is two flights up. I use the dirty one. I go to a new movie theatre that has elevators and disability bathrooms but the polished stone of the floor is so slick that my crutches cannot safely navigate it. I am walking with a friend who suddenly looks at my crutches and says, you don't want to be this way the rest of your life, do you? Her repulsion is barely masked. I feel unutterably alone.

While some of these encounters are minor, the party in her honor that she could not even attend seems a big frustration and failure of her friends to me. Three flights of steps overlooked when the guest of honor used leg braces and crutches -- it seems unconscionable.

The last several paragraphs hold promise as she turns to public access and the ADA, though most of my disappointment lies here. She acknowledges that:

Only a determined policy of public access can help to mitigate the loneliness. One needs to be able to enter buildings; have a cup of coffee; go to a restaurant, the theatre, cinema or a concert; attend school; go to lectures or readings; use public transport, bathrooms, hotel showers; go to museums and sporting events and political rallies. One needs equal opportunity in employment. One needs to be integrated into the world, not separated from it; yet one has special needs, ones that able-bodied people rarely consider. The low consciousness of the able-bodied increases alienation.

She praises the accessibility the law has provided for her in public places, and gives credit for this to juries awarding high punitive damages to plaintiffs, which is not untrue but significantly misrepresents the successes and history of the ADA in the courts. There is no indication at all that more needs to be done or that the law is perpetually under fire in the media and from Republicans in Congress.

So that wraps up my ungenerous critique. Admittedly, I'm generally uncomfortable with Dworkin's emotive writing style. And I'm uncomfortable with any telling of the crip experience that has even a whiff of the "why me?" stereotype of disability as drama. I've seen too many disease-of-the-week, inspired-by-a-true-story, whine-until-some-nondisabled-person-snaps-you-out-of-it sagas on TV and film to be comfortable with any reinforcement of that tale.

And the last time anyone really famous was given big media attention for their disability, it was Chris Reeve on Barbara Walters talking about how he had wished himself dead and how his purpose in life was now to find a cure for paralysis. When he died a decade after his paralyzing injury it was widely reported that the cause was sepsis from bedsores and that such problems were an understandable killer of any quad. In truth, Reeve died from a violent reaction to a medication, and while he had been dogged by infections he was sitting in his wheelchair at a hockey game earlier on the day of his death, something no person with a dangerous sore on his butt would ever do.

It took Reeve the better part of a decade as a disabled person to start speaking about the basic civil rights we all deserve, though he spokpubliclyly about other issues all the time. My expectation that Dworkin would stir the pot for disability rights was unrealistic and bound to disappoint. Disability isn't an identity anyone embraces overnight, and some obviously impaired people never accept it.

And beyond that, becoming politicized about the social treatment of disabled people also doesn't come easily. For most, there's no discussion around the dinner table about the day's humiliations with others who've experienced the same. The disability rights movement was largely started in the U.S. by a generation of people who caught the polio virus and were institutionalized together and perceived the injustice of their collective treatment because of this. Most crips don't experience this kind of community unless they seek it out. Not Reeve, not Dworkin, not me.

Dworkin had nothing remotely "apocalyptic" to say about disability. If she'd lived another 20 years that may or may not have changed. Her last piece of writing is not at all political despite it's mention of the ADA -- because her mention of the ADA was completely uncritical. It's just a personal piece, quintessentially Dworkin, really. And the sad truth is that any newly disabled person (or newly accepting of the identity) is not ever speaking politically about disability rights unless they say they are, celebrity or not.

Crossposted at Alas, A Blog
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My ventilated life

I'm in a grumpy mood. It's clearly autumn today, and I love the smell of the air, but it's dreary outside and my allergies are bad. Inside, I have a meeting this afternoon with the administrator of the home health care agency that manages the nurses who help me. And all the nurses too. The meeting is here in my home with all the people who have to follow me around 24/7, and frankly, I don't want to see any of them, even the ones I'm especially fond of.

In an old New Mobility article on vents and vent users Barry Corbet writes:

The biggest single problem vent users face is the outrageous cost of their equipment and care. Many who use invasive ventilation need skilled nursing, and paying for 24 hours a day of that can be a nightmare. A few have trained friends, family and unskilled help so well they feel comfortable with a minimum of nursing care.

The care level may not be a matter of choice. Many states mandate skilled nursing for vent users. That annoys those who feel they can get by with cheaper help, and alarms those who fear their essential nursing will be cut by the current enthusiasm for cost containment.

My 24-hour nursing care isn't a matter of choice. If I get help with the cost, the help is required to be medically trained nurses. I don't know what level of assistance I'd be comfortable with -- what I get now appears to be my only choice other than a nursing home. I do need someone around to help me use the bathroom, to suction my lungs of gunk (because the trach disallows the normal process of clearing one's throat), and to help reconnect tubes should they suddenly fall apart. Or switch vents or get the external battery if there's a vent or power failure, respectively.

My big beef with my nursing assistance is that it totally medicalizes my life -- my normal life at home where I'm not ill. In the hospital I had my "vitals" (blood pressure, temperature, pulse, etc.) taken twice a day, at the beginning of each 12-hour shift. Here at home, since the vitals are supposed to be written on the time sheets each nurse hands in for pay, I sometimes have them taken three times each day. Any remarks by me that "I feel fine, terrific," would only be anecdotal to the medical evidence of the vitals they are required to collect.*

There are also nursing notes made about my activities for each day. It's written down if I took a nap, went to Target, visited with a friend, didn't want lunch, or cleaned the closet with my Mom. I'm sure there are much more intimate details, but I avoid pissing myself off about it all by not reading the log. I do know that if I whack my shin on something accidently, the bruise will probably be noted in the charts. My mother might also be asked about it as a check against my being abused.

These required procedures that do not contribute to the smooth use of my vent are an invasion of my privacy, and there's nothing I can do about it. And from what I understand I am not even permitted to contribute to the payment of this care since I'm on both federal and state disability aid. There's no incremental plan. Either I'm wealthy enough to cover it all, or I'm forced to be poor to keep the government paying for it. And there's no chance of my covering it all.

Vent user Greg Franzen tells a similar story:

"The way the insurance looks at it," he says, "you need skilled nursing. I agree with that. But if that's the case, then they won't pay for attendants. Now if I get attendants to fill in the non-nursing hours and they do a satisfactory job, will the insurance say that I don't need skilled nursing anymore? That would be devastating. I don't know if it's true -- I'm too afraid to ask."

If he lost his skilled nursing care, would a nursing home become a threat? "Very much so," he says. "People with vents are very, very vulnerable because of the cost issue. And when we have these Dr. Kevorkians running around, and with a budget crisis, I'm a more attractive target than other people just because of the expense."

It all adds urgency to the cost issue. "Somehow," he says with finality, "I need to be able to make enough money to take care of myself."

Greg might seem well-equipped to do that. He graduated in 1990 from the University of Missouri with a degree in environmental design. The trouble is, Greg says, salaries start at about $15,000 a year. "If I'm going to make $15,000 a year, and my costs are over $80,000 a year, what good is that going to do me?"

So he stays at home. In the meantime, how's his quality of life? "I think it's excellent." What makes it good? "My zeal for life. My love of life."

Quality of life is a topic of the same series of articles linked above (italics are mine):

A 1992 life satisfaction study by John Bach compared responses by 80 Duchenne muscular dystrophy ventilator users to responses by 273 MDA clinic directors. The clinic directors significantly underestimated the users' reported life satisfaction. The study concluded that patients who were perceived by physicians to have a poor quality of life were less likely to be offered assisted ventilation.

In a 1992 study by Bach and Campagnolo of 395 ventilator-assisted people who'd had polio, 86 percent reported their lives were characterized by hope, value, freedom and happiness. Forty-two percent of the ventilator users were employed and 39 percent were married. Yet again, the health professionals used for controls underestimated the life satisfaction of people using ventilators and overestimated the difficulties. It was concluded that physicians should be aware of their inability to accurately gauge the life satisfaction of individuals and should not use their perception of poor quality of life as a reason to deny ventilator assistance.

In a 1994 life satisfaction study by Bach and Tilton, 42 ventilator-assisted quads and 45 autonomously breathing quads were compared to a control group of health care professionals. Both groups with spinal cord injury reported higher life satisfaction ratings than were predicted by the controls. Notably, the ratings for those who used ventilators were higher in some areas than for those who didn't -- the former were dissatisfied with sexual function only, whereas the latter were dissatisfied with their jobs, health and sexual functioning. Vent users said life was friendlier, more interesting, more enjoyable, fuller and more hopeful than non-vent users.

A 1992 study by Whiteneck, Charlifue and Frankel of people with spinal cord injury at least 20 years post-injury showed that those using ventilators rated their quality of life higher than those who didn't, and had a lower rate of suicide ideation.

I can't explain why vent users are reportedly happier than similarly-disabled nonvent users, but I have no problem believing it's true. This vent-using life seems to be underestimated in so many ways by people. And over-regulated.

___________________________________________

*Update: The home health care meeting went extremely well. Apparently, residents in nursing homes only have their vitals checked weekly. (!) Because I have some very smart nurses I am now on the institutional plan. Once each week for vitals, except temperature, which is an indicator of infection. W00t!


Crossposted at Alas, A Blog
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Avast ye mateys!

Arrr! That's right, it be International Talk Like a Pirate Day, possibly the silliest idea ever. But admit it: You're dyin' t' drink some grog and tell someone t' go walk the plank. This silliness be about pop culture pirates, ye see, not the bloody an' brutal pirates that still sail the seas t'day.

Pop culture pirates, it be true, are surely the gimpiest people ever. Eye patches, hook hands, peg legs, and those terribly awkward hats. Why that be, I've no idea. Anyone?

Crossposted at Alas, A Blog

Saturday Slumgullion #11

• Stephen Kuusisto, whose new book Eavesdropping is now available, blogs poetically about "the stare."

Years and years have gone by and I still can't get used to all this staring. And then the talk. Talk like fruit dropped in crystal. The talk they have kept secret even from themselves.

• Dr. Lisa I. Iezzoni writes in the New England Journal of Medicine (as a doctor who uses a wheelchair) about the failings of nondisabled doctors in dealing with disabled patients.

• Gordon Rattray travels Ethiopia with lots of assistance from generous and friendly people.

• Penny at Disability Studies U, Temple Univ. offers an impressive round-up of recent disability blogging that puts my slumgullions to shame.

• Wheelchair Dancer spent a little time last weekend critquing the NYT and its lack of crip savvy in two particular articles, here and here. Excellent analyses of the nondisabled slant in mainstream media. She also writes with candor and delicacy about how the joys of imperfection do sometimes clash with a decided ambivalence about her disability. I hope to write a response to this soon, but it's not to be missed on its own.

• Kari Brooks catalogues some of the responses she gets when it becomes known she's a special education teacher in her post, "God loves alligators."

• Nappy as I Want to Be writes about youth of color and mental illness. She provides lots of excellent links about specific racial groups and how vulnerability to both mental illness and lack of care can effect each when care is built focusing on the point of view and problems of mostly white males.

• Zilari at Processing in Parts comments on the case of the baseball coach who talks an eight-year-old into harming an autistic teammate in order to force him off the team.

Now, it's a good thing I don't engage in making mass judgements about nonautistic people based on the actions of a few. If I did, I'd probably be pointing to this incident as proof that we have a moral imperative to search for a cure for "non-autism".

• Susan Schwartzenberg's book Becoming Citizens: How Courageous Families Changed the World for People with Disabilities is also an historical exhibit at the Washington State Capitol Museum in Olympia, running from this Sunday through January 6, 2007.

Like the exhibit, the book traces the families' efforts to find education, friends and support for their mentally disabled children - at a time when institutionalization was the social norm.

Through informal dinners and other get-togethers, the families became a political force, Schwartzenberg said.

"You learn about these remarkable moms," Schwartzenberg said. "It's a story about the women's movement. It's a story about civil rights. It's a story about family collections. And it's a story about disability as well."

The families' efforts culminated in the passage of the state's 1971 Education for All law, which guaranteed every Washington child an education. The law was the predecessor to the federal Education for All Handicapped Children Act of 1975.

• In a FindLaw column from 2001, Sherry F. Colb discusses disability discrimination and her experience with the New York bar exam:

The exam was scheduled to begin at 9 AM, but the proctors in the "special" room did not hand out the test papers until closer to 10. I worried briefly that we might not get the full time allotted to complete the test, but no one seemed to be keeping an eye on the clock. The next morning, on Day Two of the exam, it appeared we would again be starting late. I asked one of the proctors whether perhaps we could begin our exam at 9 AM on that day. With a puzzled expression on her face, she asked why. I replied that everyone else was taking the exam at 9 AM, and that I did not know of any reason for us to be delayed. She smiled and responded slowly: "If you think you can take the exam with the normal people, why don't you go ahead and try?"

• Kenyans in wheelchairs make money with mobile phone service. YouTube video here.

Crossposted on Alas, A Blog
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Society for Disability Studies 2007 CFP -- Not just for scholars

Call for Proposals
Society for Disability Studies
20th Annual Conference
Seattle, May 31-June 2, 2007
“Disability & Disability Studies: Works in Progress”
Submission Deadline: 15 November 2006

2007 marks the 25th year of the Society for Disability Studies, and the field has changed dramatically over the last quarter century. As Disability Studies continues to grow, increasing its presence in university departments, cultural criticism, and art and knowledge production, SDS wants to take this anniversary opportunity to reevaluate the discipline and reflect on the state of the field. Current Disability Studies scholarship differs from much of that which precedes it, most notably in its efforts to be more inclusive, offering a more complex conception of what constitutes “disability.” Rather than remaining rooted in a particular cultural moment or ideological understanding, Disability Studies is a work in progress.

In order to encourage this kind of self-reflection, both as a field and an organization, this year’s conference addresses the idea of “works in progress,” paying particular attention to the following themes:

Disability is a work in progress. What does “progress” mean in terms of disability? How has the notion of “progress” itself been used to justify the oppression of people with disabilities, and how can these histories serve as points of coalition with other peoples marginalized in the name of “progress?” How have ideologies of “progress” been used to create and maintain categories of “disability,” and how do these histories inform and inflect histories of race, ethnicity, class, gender, sexual orientation, nation, and religion? How are definitions and representations of disability in progress, shifting according to the needs of capital, policy, and resistance? How are current immigration practices and debates building on existing notions of disability? Are the increases in disabled veterans in the US and its allies, and the massive numbers of peoples injured by occupations, invasions, insurgencies, and other conflicts worldwide, transforming our understandings of “disability” in terms of theoretical analysis or public policy?

Disability Studies is a work in progress. In its efforts to inform disability policy and understanding, the discipline has too often neglected salient categories of analysis. What issues have been swept under the rug and at what costs? What are the reasons for this lack of critical examination? As Disability Studies has grown, how has it marginalized particular methodologies, theoretical frameworks, or knowledge bases? Will the discipline benefit from a broader, more comprehensive focus, and if so, how? How does current Disability Studies scholarship vary from previous Disability Studies scholarship? At this stage in the field’s development, what possibilities for collaboration with other fields and knowledges exist? Where is the discipline headed?

SDS is a work in progress. Consider, for instance, the organization’s recent efforts to integrate race and ethnicity. Where are the points of future growth? How might SDS develop an international or transnational focus, more actively engage individuals with intellectual disabilities, facilitate the inclusion of grassroots activists, and encourage academic and/or political involvement with questions of war and immigration? What barriers currently prevent the participation and inclusion of these individuals and concerns? What role, if any, has SDS played in the construction of these barriers? How are artists, scholars, and activists deconstructing them, and what might the organization learn from their efforts?

Access is a work in progress. Often, the tendency at conferences is for participants to present completed work. This can have the effect of the presenter talking at the audience instead of to them. This conference encourages participants to try out innovative forms of access while bearing in mind ways of actively engaging the audience. For example, how can participants share their work in creative, less traditional ways in order to increase access? What can participants do not only to honor but further SDS’s access policies? How might conference access itself, and particularly presentation access, be a matter of research and discussion?

“Work” is a work in progress. Arguably, barriers often exist between Disability Studies scholarship and disability activism. One aspect of this conference will be to address these barriers through the lens of “work,” engaging divides between scholarship and activism in new ways. How might scholars and activists conceptualize their work differently? Are some kinds of work valued more than others? In what ways does each group’s work inform the other’s? How might insights from disability research translate into community activism, and how might activist projects be translated into research projects? How might the two groups—Disability Studies scholars and disability activists—work collaboratively? What are the benefits in drawing firm lines between these two approaches to disability, and what might be the attendant risks in doing so?

SDS invites activists, artists, and scholars to submit proposals for all work in progress in Disability Studies. Work can be submitted in a variety of formats, including paper presentations, poster sessions, performances, video/DVD recordings, etc. The Program Committee will make every effort to honor participants’ requests insofar as presentation format. We ask participants to bear in mind that the committee may reassign participants to other presentation formats, styles, and panels in order to develop the richest program possible.

Contact information and additional submission details provided at the link above.