Public perceptions, equipment and environment

Stan at Stan's Blog writes about his experiences as a nondisabled person who temporarily needed crutches for a broken leg. He noticed distinct differences in how he was perceived and treated depending on the type of crutches he used, which goes along with what I was describing (and commenters confirmed) about differing public reactions to specific bodily presentations of disability. I wrote:

Anyone who has experienced both limping and using a wheelchair will tell you that public reactions to the two appearances differ. Same with manual chair versus power chair, white cane versus guide dog, invisible impairment versus visible one(s), and, Ballastexistenz claims, with dog versus sans dog for her as a person with autism. Visual differences cue stereotypes, and breathing on one's own versus towing a ventilator on my scooter also makes a discernible difference. Most notably, even fewer people are willing to make eye contact.

Stan spent about two months on crutches, beginning with the wooden armpit-killers, switching to wrist-cuff crutches, then back to the wooden ones. He found public response to be very clear and discerning:

Everywhere I went people saw the crutches and were unbelievably willing to help me by opening doors, making chairs ready, carrying my briefcase and so forth. One day at church an elderly lady who had been experiencing hip problems told me that she had a pair of the type of crutches that hook onto your wrists and that she would loan to me if I wanted to use them. She said her wrist crutches would save me the pain from the under-the-arm type of crutches that I was using at the time. I jumped on that idea and immediately put them to use.

The very next day I began to experience something I was totally NOT expecting. People shunned me! They wouldn't make eye contact, they wouldn't open any door, pull out a chair - nothing. I immediately began to feel isolated. I went to eat at a restaurant in Dallas - same response, until I sat down and hid the wrist type crutches under the table, then everything was fine. I pulled them back out to leave - same type of distancing response - from everyone! It dawned on me what had been occurring. These crutches I was using were the same kind that permanently disabled people use - people with polio and other seriously degenerative diseases. Whenever people saw the wrist crutches they thought that I was disabled - permanently, and evidently didn't know what to do with that or intentionally shunned me. As soon as I hid them from sight - back to normal. I realized that what I was experiencing is what millions of partially and fully disabled people all around us go through every single day of their lives.

I went straight home, put the wrist crutches in the closet, pulled out the old wooden crutches, pain and all, and went back to work the next day. Guess what - here came the open doors again and all the other percs I was getting from having a broken leg. I guess people saw the wooden crutches as a temporary ailment and the other type of crutch as permanent and their responses to me sprang from their perceptions.

Environment matters too, I think. I've been at parties where everyone was milling about and no one would make eye contact with me to even nod, say "hello" and move on. Later, when the same party had evolved into clusters of people sitting down to talk, I was included in conversations much more readily.

Was it that everyone was more comfortable with the party atmosphere after a couple hours? Were they relaxed and less self-conscious about talking to me (or anyone) after a few drinks? Or was it because sitting at my eye level, I was viewed as more of an equal? All of the above, I think. But being viewed at eye level did make a difference, I believe.

Bush and disabled folks

From the New Yorker:

Who is Peter Wallsten?
(a) the partially blind reporter whom George W. Bush mocked ("Are you going to ask that question with shades on?") for not removing his sunglasses while addressing the President
(b) The wheelchair-using senior citizen whom George W. Bush mocked ("You look mighty comfortable") for not standing in the presence of the President
(c) The CIA employee who, after delivering the "Bin Laden Determined to Strike in U.S." briefing, was told by George W. Bush, "All right, you've covered your ass now."
(d) The Iraq-war amputee with whom George W. Bush tried to bond by telling him about a scratch he got during "combat with a cedar" while clearing brush.

As you can possibly see, I have an injury myself — not here at the hospital, but in combat with a cedar. I eventually won. The cedar gave me a little scratch. As a matter of fact, the Colonel asked if I needed first aid when she first saw me. I was able to avoid any major surgical operations here, but thanks for your compassion, Colonel.
-- George W. Bush, after visiting with wounded veterans from the Amputee Care Center of Brooke Army Medical Center, San Antonio, Texas, Jan. 1, 2006

All of the possible answers are things that actually happened, but in this case "Peter Wallsten" is (a).

Crossposted at Echidne of the Snakes
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Until every single penny is gone

Update: Liz deleted her blog Granny Gets a Vibrator, so I believe the dead links to it below represent lost writings, but her new blog is As The Tumor Turns. For those who don't understand the now-missing reference: Brenda was the tumor's name, and she appears to have been beaten into submission/remission.

The fantastic Liz at Granny Gets a Vibrator has been blogging and slogging her way through a recent cancer diagnosis and all the medical, financial and existential fears that travel in it's tumor-swollen baggage. (A quick and violent death to Brenda!) I can't say enough good things about her writing and I wish her all the strength and luck she needs for this week and until this is over.

The medical worries are bad enough, but I keep thinking back to Liz's recent rant about the financial concerns a medical crisis creates and adding her rants to the ones I work through daily in my head. (I've written just a little about them here.) Here's Liz:

The system at the "charity" hospital is a total disaster, a massive fuckup, a guaranteed death sentence. Not just for me, but for 4,000 poor uninsured people who desperately need health care every month. I'm slipping through the system's cracks: medically, there's no continuity, I never see the same person twice, no one can figure out what's going on, locate my records, or find out which doctor said what or why. And I'm slipping through the cracks financially: because I have a small amount of money left in my IRA, my "liquid assets" disqualify me from receiving free care, until every single penny I have is gone. Which at this rate could be in about three weeks....

And the struggle to figure out how to deal with the financial monstrosity. I deeply appreciate the Paypal offers, but you know, we're talking about maybe $60,000 a month? Probably more. Astronomical. Impossible. Ruinous.

I'm not going into this all detail out of self-pity, or to whine about how it's so unfair to me. This situation is not just about me. There are millions of people out there in the same sinking boat I'm in, with nowhere to turn. It's just unimaginably horrible. I sat there and watched several hundred such people suffer today, and most of them looked completely defeated, thoroughly resigned. The tired dead-eyed hopelessness in their faces still haunts me.

It is impossible and ruinous. The health care system in America is just broken. If Bush and the international gratitude his actions create don't kill us all, the health care crisis will destroy us economically as a country. And our independence one by one.

I was in hospital four months. Three different hospitals, actually. I'm unemployed now, but because I was insured as a baby before my impairments were evident or serious, and because I still ride on that insurance through my parents, who finance it, I have excellent insurance coverage.

Still. This hospital stay forced me to activate the full Medicare benefits I qualify for and apply for state aid for the disabled. I have no idea of the full cost of my illness and recovery, nevermind the current care I receive at home. The hospital bills exceed a half million, I know. But the paperwork goes round and round -- employment of the circulators probably costs half what I owe. Medicare and my insurance company send me reports, the hospitals send me totals of various things, then they all request the others pay their share, and they all send me updates on how that's working out. It usually isn't working out, so it's a self-correcting program where we go round again. I'm not sure anything has yet been paid.

There are the inevitable errors that slow this idiotic process down. At one point my medical supplier billed my insurance company, and the insurance company paid but inexplicably sent the check to some random trucking company with a slightly similar name. The trucking company cashed the check, which was a little over 20K. (Well, wouldn't you?) The supply company demanded the money they never got, the insurance company insisted they'd paid it. Someone demanded a cancelled check. Someone refused. It got kind of pissy.

There was mention of going to court, where, of course, I would get named as the delinquent defendant. I swear this is all true. Meanwhile, I'm not speaking because I'm a lazy ass vent user and, frankly, I want some alone time from all this attention and being able to legitimately claim I can't speak comes in quite handy sometimes. So, my father spent a week or two on hold. And because he has a talent for this, he eventually made someone see reason and they all grew up and fought this out without my needing to pay legal fees. I don't know if the supply company actually got paid or if they agreed to add that bill to the merry-go-round again.

There was discussion while I was in the rehab hospital about whether or not my parents would need to spend down their assets to nothing so that I could receive the continuing care I need at home. My retired parents who have had the luck and good sense to cover their own aging butts as best as any upper-middle class couple in this broken system can were told they might need to give up everything so their 37-year-old daughter could live with them and get daily care. That's a rockin' deal for them.

The details of why this needed to be considered involve how I almost ended up in a very scary nursing home. I'll write on that another day. A hospital social worker helped us navigate the system so that only I need to be poor. Currently I do live with my parents and have 24-hour nursing care because of the ventilator and the laws attaching to receiving aid at home.

In order to get funding for home care while using a vent, it has to be qualified nurses rather than just anyone trained as a personal assistant. Though, of course, my parents learned everything the nurses need to know for my daily care from the rehab hospital staff and they are allowed to help. Because this country has a nursing shortage, in fact, my parents were on duty half the hours of every week (84 hours shared between them, sometimes 48 at a stretch) for about a month before all my nurses were found and hired by the agency required to handle this for me. If I had enough family to be present round-the-clock without pay, no one would care they didn't have medical degrees. (More on that, too, another day.)

In order to keep the funding that provides this constant professional care, I have to have less than $3,000 in total assets to my name. Constantly. Forever. I get a disability benefit each month. I'm not allowed to pay my parents rent and in these first few months I haven't been out too much. So, ludicrous as it seems, it's been a challenge to maintain my total poverty. I can't invest. I pay for what I can around the house. And I do what is called a "spend down."

Many disabled do it or something similar. My college roommate used to get her personal attendant funds and college funding in cash so it wouldn't show in her financial records at the bank. And she was wicked generous with birthdays and Christmas because she couldn't use any cash to, you know, build a future for herself.

One nurse told me of a man she used to help who had his home nursing cancelled because he had too much in the bank. He called the home health agency back a day or two later, said he'd been on a spending spree and they could come back now. He was poor again.

If I didn't live with my parents, almost every cent of my disability benefit would go toward food and rent -- or maybe just rent. I would be among the poorest of the poor at $760/month, or more likely be in that nursing home with no autonomy.

Anyone who could get hit by a bus tomorrow and need a ventilator would face all of this. Or anyone who has a tumor. Or is a soldier in the war. Because the system is broken, we're all just that close to losing any hope of economic independence. Or life outside of an institution. Astronomical. Impossible. Ruinous. And a lurking threat.

Crossposted at Echidne of the Snakes
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The pity "conundrum," part two

Coturnix claims that the symbol and the reality of Hooters are different from one another, creating the possibility that the actual restaurants are not mysogynistic and demeaning to women. But the problem is that the Hooters symbol is not the logo or the costumes or the restaurants themselves, but the breasts of women. Objectifying women's bodies to create an environment for the dominant male heterosexual gaze, women's breasts themselves become the symbol for the restaurant. It was easy for the chain to establish this connection in a culture where women's bodies are symbolically colonized for the male sexual gaze everywhere you look. But detaching the symbol from the cultural meaning is more complicated then Coturnix suggests when women's breasts/bodies come to represent women themselves.

The telethon symbol.

Just as Hooters is one "genre" of women's objectified bodies serving as entertainment that includes strip clubs and The Rockettes, the MDA Telethon is one "genre" of how disabled people's bodies are culturally used to define normality, safety, and bodily superiority of the nondisabled. Beth Haller explains the cultural place of telethons and the effect of opposition to them:

Culturally, the disability activism against the telethon has real ramifications for the ideology surrounding disability in U.S. society. Marilynn Phillips* calls a telethon an "occasion of ideology," rather than an "occasion of social reality" in U.S. culture. Occasions of ideology invoke pity and charity in belief of a cure, whereas occasions of social reality summon feelings of resentment and confusion over the "abnormality" of people with disabilities. During occasions of ideology, discourse focuses on the "defect" of the person, and disabled persons are homogenized as one. Phillips says, "primarily, these are events which define culturally appropriate handicapped behavior (being a good cripple), and which serve to demonstrate predictable interactions between nondisabled and disabled persons."

With the MDA Telethon and the rhetoric Jerry Lewis insists on using to beg for money (and he does actually use the word "beg"), the symbol of the MDA and it's telethon is bodies in wheelchairs. Or, the wheelchair, if you like, though if a body uses a wheelchair the symbolism pushed by Lewis conflates the meaning of one with the other. Haller, on the body the MDA Telethon symbolizes (I've left her references in this excerpt intact):

Their bodies are seen as inferior in their physical functioning when compared with people who do not have muscular dystrophy. When the body becomes the focus of humanness, this inferiority of body means the people become inferior as social beings as well (Liachowitz). David Hevey explains how charities use bodies for the visual associations needed for awareness among the public:

The task for the (charity) agency is to find an image which gives the impairment and its effects a symbolic but social identity. Since the impairment has to be the site of disablement, it follows that the body of the person with an impairment will be constructed as both the essence and symbol of disablement. Their body becomes fragmented and refocuses on the major fragment--the impairment. The object of this first stage, then, is to place the symbol of the impairment into social orbit but labelled as the property or concern of the affiliated charity. (34)

With this in mind, people with muscular dystrophy are therefore constituted as inferior or subordinate to people without muscular dystrophy.

Lewis goes out of his way during the MDA Telethons to emphasize the difference between his nondisabled self and the disabled bodies he invites on the show. And they are bodies he invites, not individuals, as assured by the way he interacts with them. Haller's paper includes a fascinating analysis of the spatial structure of Lewis' interview with a disabled man during the 1992 Telethon. Here's a taste:

In an interview sequence between Lewis and Matt Schuman, a former poster child who works as a sports reporter for the Greeley (Colo.) Tribune, Lewis always stands. In the first shot of Lewis and Schuman together, Schuman's face is covered by the two lines of call-in numbers at the bottom of the television screen. The spatial difference exists because Schuman is seated in a wheelchair and Lewis, who is tall, is standing. This causes Schuman's presence in the shot to be negated because the call-in numbers cover his face part of the time and because only his head and shoulders are visible in the bottom left corner of the TV screen at other times. All attention is directed toward Lewis because he is standing. These spatial relations exist not just with Schuman but are repeated throughout the telethon whenever Jerry Lewis interacts with someone who uses a wheelchair. One way to diminish this superior-inferior special structure would have been to have an interview comer in which Lewis sits to talk to people who use wheelchairs. But instead Lewis stands throughout the days of the telethon.

Also:

Throughout the telethon, he hugs and caresses the children and adults with muscular dystrophy, all of whom he calls his "kids." When Schuman completes his short speech, Lewis rubs and pats the back of Schuman's head. It is not a "good job" touch from one adult to another, as a pat on the back or a shake of the hand might be. It is a parent patting the head of a child to indicate the child has pleased him. In reality, Schuman is a working adult who happens to have a physical disability.

Lewis infantilizes disabled adults he interviews, assuring the audience that bodies in wheelchairs are inferior, need pity and that the nondisabled should contribute money for research to avoid the gruesome fate themselves.

The persistent reality.

With Lewis insisting the objects of his charitable works either accept pity or "stay in your house," disabled people beginning to organize and fight for access to public buildings, transportation, employment, and general civil rights were responded to with sentiments like those to the blog post about protestors at an event of Lewis':

"I agree that more could be done to ensure more accessability for those that still have the ability to remain independent (ramps, parking, etc.), but money also needs to be raised so that future generations won't needlessly remain at a disadvantage, and nothing brings in donors like pity."

and

"I can't believe you attack him just because he doesn't do it the way YOU think is the right way. Get a life."

and

"It's sad that those poor unfortunate persons with disabilities hate the man who tries to help them."

and

"If you keep pushing people away because you can't agree with everything they say or how they do things, don't be surprised when people stop working to raise more than $100,000,000 a YEAR to help people in your situation."

Disabled protestors are repeatedly established as inferior, and disable people generally are told to keep their place and accept what charity they can get instead of the access they desire. It should be noted that people who argue that financial help for the disabled should come solely from private charities rather than government funding would lock disabled people into the pity rhetoric and out of a position where they're worthy of civil rights.

Finally, the conundrum, again.

For disability activists protesting the MDA Telethon and Jerry Lewis, the money raised is too high a price to be paid for personhood. The argument that money should be raised (and accepted by the disabled) by Lewis' methods because it's for a good cause -- a cure -- becomes meaningless when disabled bodies are so culturally devalued that life until the elusive cure locks them into the role of pitied victim instead of active member of society.

Of course, not all disabled people or people with muscular dystrophies agree with Jerry's Orphans and other Telethon protestors. Some are so focused on a cure that like Chris Reeve said in his early years of paralysis, he didn't really care about disability politics and access. Years later, as he continued to wait for that cure, Reeve acknowledged that he'd like more curb cuts in the meantime, though this was not publicized by mainstream media.

Is it possible to raise money through a telethon without demeaning disabled people? Telethons following 9/11 and Katrina did not categorize the people the money was being raised for as inferior in order to elicit compassion and donations. Disabled protestors insist on at least that level of respect. On activism and better alternatives, from Disability World:

Don't watch the telethon. Tell your local station ahead of time why you won't. Give directly to the MDA and not during telethon time. Tell them why you are choosing to do that. Also tell the MDA that Jerry Lewis has got to go. He has had years to change the message and has chosen not to do so. Their mailing address and phone number are at their website. (http://www.mdausa.org)

Look up the Muscular Dystrophy Association of Canada (MDAC) and see how fundraising can be successfully done without pity.

Check out the Muscular Dystrophy Family Foundation (MDFF). It was founded by people with MD and their families. They provide the same kinds of services as the MDA. Their pitch is based on empowerment. (http://www.mdff.org) Their spokepeople are rock musicians who have had MD since childhood.

Compare Lewis' MDA pity pitch to that of Easter Seals with their focus on discrimination and architectural barriers; United Cerebral Palsy with their emphasis on careers, education and family; and the United Negro College Fund with its focus on the wrongness of wasted human resources. Tell other people about your conclusions.

And a final note on Hooters: Because Hooters objectifies women and women's breasts, it is part of the societal force that determines preferred or "normal" bodies from "abnormal" or flawed bodies. As a disabled feminist, I find Hooters objectionable on two levels -- for the patriarchal contribution it makes to the objectified "perfect" female form and for the corresponding impact those standards have on disabled bodies. None of this will ever change if the structures reinforcing cultural standards are supported, for whatever reasons. My answer is no.

Crossposted at Echidne of the Snakes
Check there for more comments.


* Marilynn J. "Damaged Goods: The Oral Narratives of the Experience of Disability in American Culture." Social Science & Medicine 30.8 (1990): 849-57.

The pity "conundrum," part one

This is a really long post, so I've divided it into two entries and added subtitles. Part one includes some history you could skip if you know the facts, but the basic knowledge is important for making my point, which is in part two.

Coturnix, another guest blogger for Echidne, writes about "The Hooters Conundrum" and poses the question originally offered by Pharmboy:

Can Hooters support the fight against breast cancer all without being perceived as capitalistic, misogynistic, or otherwise demeaning to women?

Much simplified, Coturnix argues that the symbolic Hooters sells sex (though not hardcore like at strip clubs), but the reality of Hooters is that many franchises are family friendly and money for cancer is good so the source doesn't matter so much. Also, the waitresses he's met were all smart, going to college, and had never ever worked as strippers. Some even had small boobs.

Responding to disagreeing feminists, Coturnix suggests that "the symbolic Hooters" is part of the past and society is evolving beyond any need to see the women wearing Hooters tank tops as sex objects. Besides, the women make more in tips than elsewhere and, with perverts, they "fully enjoy their power" to "put the guy in his place with a smile and still part him from his money." Ahhh, family fun.

Obviously, I disagree, but what does this have to do with blogging about disability issues? The above question Coturnix poses is strikingly familiar to one that can be asked each Labor Day (Monday, September4, this year, for non-Americans) when the MDA Telethon relentlessly rolls around:

Can the Muscular Dystrophy Association Telethon and Jerry Lewis support people with muscular dystrophy without being perceived as paternalistic, pitying, and demeaning of disabled people?

First, some history.

The first MDA Telethon in 1966 was hosted by Lewis and covered by a single New York City television station. As the main fundraising event for the organization, the Telethon uses "poster children"-- now called "goodwill ambassadors"-- to advertise the diseases of MD, their effect on families, and the need for money for medical research.

Evan Kemp, who worked hard for the passage of the ADA and served as Director of the EEOC under Daddy Bush, wrote an opinion piece published in The New York Times in September, 1981. Ragged Edge reported on what Kemp said:

Society, Kemp charged, saw disabled people as "childlike, helpless, hopeless, nonfunctioning and noncontributing members of society." And, he charged, "the Jerry Lewis Muscular Dystrophy Association Telethon with its pity approach to fund raising, has contributed to these prejudices."

Kemp contended that such prejudices "create vast frustration and anger" among disabled Americans, then numbered at 36 million. Kemp charged that disabled people suffered far more from lack of jobs, housing -- lack of access to society -- than from the diseases MDA sought to cure. He accused the Telethon's "pity approach . . . with its emphasis on ('poster children' and 'Jerry's Kids' " -- of creating prejudice. He called upon the Telethon to reform; to portray disabled people "in the light of our very real accomplishments, capabilities and rights." The Telethon, he insisted, "must inform the public of the great waste of money and human life that comes from policies promoting dependence rather than independence."

Not much happened for about a decade. Except that the MDA tried to get Daddy Bush to fire Kemp and other charity telethons modified their approach a bit. Then in 1990, the Sunday Parade Magazine's Labor Day edition included it's annual plug for the MDA Telethon and Jerry Lewis writing as if he were a child with MD. Lewis wrote:

"I realize my life is half, so I must learn to do things halfway. I just have to learn to try to be good at being half a person. I may be a full human being in my heart and soul, yet I am still half a person."

Irate former poster children nationwide began to speak up that their roles as children had been demeaning belittling experiences, that Lewis perpetuates the disabled person as pitiful and childlike, and that the charity mentality directly undermines the empowerment and equality the disability rights movement works toward. Cris Matthews and Mike Ervin, brother and sister and former poster children in Chicago, formed a group called Jerry's Orphan's. Matthews wrote to the MDA:

"Much attention is given to the kids who may not live to adulthood, but for those of us who do live on, not one word or one dime is devoted to the concept of independence.... No one is negating research or the individual's desire to be cured... [just] the attitude that stresses that, no matter what one does, life is meaningless in a wheelchair."

Ervin (of whom I am a huge fan) wrote that Jerry Lewis must go, and other good stuff. Again, see Ragged Edge for greater detail on all this. Laura Hershey in Denver, yet another former poster child, organized one of several 1991 Telethon protests and after a radio show received much hate mail labelling her as "selfish," "bitter," and "ungrateful." After each of these activists spoke publically, they received quite a bit of bullying from the MDA.

In one case, Hershey responded:

"If your attitude is representative of the Muscular Dystrophy Association as a whole, then I must conclude that the Association's problems go much deeper than just the offensiveness of the Telethon.... It seems to me that MDA has condoned, and even participated in, the widespread institutionalization of people with disabilities in this nation. . . . MDA, with its medical-model approach, has done little to provide independent living services and supports or to free its clients from the confinement of nursing homes."

The battle has continued, with the MDA and Jerry Lewis staunchly refusing to give the former poster children the credit of speaking from their experiences. In 2001, Lewis stated:

"Pity. You don't want to be pitied because you're a cripple in a wheelchair, stay in your house."

Just last year.

At an appearance in Chicago last November, audience protestors disrupted Lewis onstage. A fan of Lewis' who attended the event writes that after calling for security, Lewis ranted:

"All right, let me try to get through to the regular people." Applause. "For all of the 54 years that I've raised over $2 billion for children that needed it" -- applause, cheers -- "only in Chicago does this happen." He referred to the protestors "sitting in the chairs that I provided, but they want me to stop the telethon because I make them look pitiful. What is more pitiful than this?"

In the comments to that blog post (along with some support for the protestors) are these responses, typical of what you might find anywhere this dispute is discussed:

"I don't believe Jerry Lewis would go to such lengths to raise money for research if he truly had a disdainful attitude for the disabled. I think his intent is one out of goodness and caring, despite perhaps a lack of personal insight into actually living as a disabled person. I agree that more could be done to ensure more accessability for those that still have the ability to remain independent (ramps, parking, etc.), but money also needs to be raised so that future generations won't needlessly remain at a disadvantage, and nothing brings in donors like pity."

and

"You guys are making a mountain out of a molehill. So what if he said they are half a person. He did say the have the heart and brains of a whole person. I hate to break it to you, but it is true - physically.... I guess you want Jerry Lewis to be a little more Politically Correct? I can't believe you attack him just because he doesn't do it the way YOU think is the right way. Get a life. I bet you would bite someones head off if they opened the door for you wouldn't you? You would yell 'I don't need your pity!', when all they would be doing was helping someone in need."

and

"It's sad that those poor unfortunate persons with disabilities hate the man who tries to help them. True, he's made mistakes. True, he can be an ass at times. True, he's the only person in the world who is NOT perfect. lol It must be hard to be spiritually disabled and bitter on top of being physically disabled. I have a wheelchair-bound son-in-law. He hasn't let his disability turn him into a hateful ingrate. I pity you poor souls."

and (italics on this one are mine)

"These protesters should be ashamed of themselves! While some of Jerry's comments could certainly be construed as insensitive, at least he tries to help people. And I don't mean he helps people with M.D., I mean gets out and contributes in some way to trying to make life better for ANY of his fellow human beings. So many people today do NOTHING charitable, NOTHING to help ANYONE. However misguided or naive his attempts to put himself in the place of someone with M.D., he HAS spent over 40 years working to help people....

"If you don't want pity, don't be in a wheelchair. I will always pity people who cannot run and jump like I can, who can't play frisbee or hike or ride a motorcycle like I can. I'm sorry if this compassion is truly a character flaw of mine, but I will always feel pity for those I perceive as having less than me, whether they are crippled, poor, or just mentally incompetent. This compassion and sympathy is what drives people to do things like, I dunno, make transportation wheelchair accessible and work to unsure that the disabled have the same employment opportunities as the rest of us.

"Perhaps we should just drop that pity and say "Screw you, you'll just have to figure out a way to get that wheelchair up the stairs. It's your problem, not mine."

"If you keep pushing people away because you can't agree with everything they say or how they do things, don't be surprised when people stop working to raise more than $100,000,000 a YEAR to help people in your situation.

"But rest assured, the people who would fight Jerry Lewis because they don't like they WAY he works to raise so much money for a charity get no pity from me. They deserve only my disgust."

Equating pity with compassion, the choice becomes either to be looked down upon as a lesser being or to be ignored completely. The pitiful people in wheelchairs are cast as receivers of help who must simply sit and let others help them, if they're nice and deserving. The idea of empowerment and access to participate in one's own well-being isn't recognized as an option.

Back to the conundrum.

So, much like the Hooters question, we have a group of people who may benefit from funding for research and assistance programs offered by an organization -- plus a famous spokesperson -- that have a long history of not treating these people (and their larger identity group) with respect. If you have a problem with the idea of "respect" here, think of "disrespect" as objectification.

Next I'll explain why I believe the answer to this question:

Can the Muscular Dystrophy Association Telethon and Jerry Lewis support people with muscular dystrophy without being perceived as paternalistic, pitying, and demeaning of disabled people?

is no -- not with the organization as it is, and never for Jerry Lewis. He's the Hooters of disabled people and Coturnix's distinction between the symbol and the reality is flawed.

I should reveal at this point that I apparently have an extremely rare disease that falls under the umbrella of dystrophies the MDA serves. And I've received some funding from them as a child and sought medical advice from their clinics in Minneapolis, Chicago and Phoenix in the past. I was never a poster child, but I'm just like Jerry's Orphans in these details.

Crossposted at Echidne of the Snakes
Check there for comments.

Terrorism, airport security and the disabled

I haven't flown anywhere since before 9/11 and I've never flown internationally, but I suspect air travel for the disabled using power chairs (and ventilators) is much more complicated now than it ever was before. Especially today with the security crackdown due to information in the UK of a terror plot.

Currently, no carry-on luggage is being allowed except a single clear plastic bag per passenger. According to the BBC, this is what's allowed in that plastic bag:

Pocket-size wallets and pocket-size purses plus contents (for example money, credit cards, identity cards etc (not handbags

Travel documents essential for the journey (for example passports and travel tickets)

Prescription medicines and medical items sufficient and essential for the flight (eg, diabetic kit), except in liquid form unless verified as authentic

Spectacles and sunglasses, without cases

Contact lens holders, without bottles of solution

For those travelling with an infant: baby food, milk (the contents of each bottle must be tasted by the accompanying passenger) and sanitary items sufficient and essential for the flight (nappies, wipes, creams and nappy disposal bags)

Female sanitary items sufficient and essential for the flight, if unboxed (eg tampons, pads, towels and wipes)

Tissues (unboxed) and/or handkerchiefs

Keys (but no electrical key fobs). All passengers must be hand searched, and their footwear and all the items they are carrying must be X-ray screened.

Pushchairs and walking aids must be X-ray screened, and only airport-provided wheelchairs may pass through the screening point.

In addition to the above, all passengers boarding flights to the USA and all the items they are carrying, including those acquired after the central screening point, must be subjected to secondary search at the boarding gate.

Did you catch the likely problems for various disabled folks? Liquid medications must be "verified as authentic." "Walking aids must be screened." "Only airport-provided wheelchairs may pass through the screening point."

It's always smart to travel with prescriptions as evidence for medication and other medical concerns, but if mothers are being asked to taste their babies' bottled milk at screening points what are diabetics being asked to do with their insulin vials? How does this authentication take place and how consistently are the least... invasive procedures being used?

Since prosthetic legs are walking aids and have been subject to security search since 9/11, it's likely amputees are required to remove them today as well. Are other limbs searched too? Are travelers given a little privacy for this or does it occur in the hallway right at the checkpoint with a line of people staring? Are airport-provided wheelchairs x-rayed too? Are those using them given an adequate and safe place to sit while the equipment is taken and checked? Can an x-ray machine even distinguish the aluminum and steel of canes, walkers and chairs from anything suspicious? My understanding was that they could not, and this was why I was always directed around the walk-through devices at checkpoints and searched with a pat-down, a mirror-on-a-stick, and a handheld scanner.

What happens to the travelers who must surrender their power wheelchairs and scooters? They might have been fully capable of traveling alone without these surprise restrictions, so are they provided with appropriate assistance for whatever they need between the checkpoint and the plane seat? Like a last chance to use the restroom? I can't imagine the airlines have the staff for this, so likely these folks are simply unable to pee until they reach their destination (How many hours for a flight from Britain to the U.S.?) Pee on the plane? Surely you jest. You've been in those little closet-like restrooms, right? Accessibility of airplane bathrooms is largely a joke -- a big bladder-filled knee-slapper. Luckily carry-on liquids are banned too, though any knowledgeable gimp traveler is on a self-imposed liquid fast already.

Never in my many pre-9/11 airport experiences did I see an airport-provided wheelchair with a headrest. (And the newer aisle chairs lack them too.) If these don't exist now, there are folks like me who literally may not be able to sit in these loaner chairs without serious risk of injury. How is this handled? Are these people given a pass to keep their power chairs until the gate? (Unlikely.) And are power chair users really surrendering their $5,000 - $10,000 machines at checkpoints with a prayer they show up at their destination unharmed and useable? (As it is, it's incredibly common to get off a plane and find equipment so damaged it's unusable with hundreds of dollars of repair needed -- and never any reimbursement, btw.)

What about gel-cell batteries that power these machines? The list of banned materials includes wet-cell batteries and all explosives, but laws for disabled access have always allowed gel-cell batteries that will not spill. Since today's restrictions specifically ban "liquids and gels" from carry-on, I expect there's some confusion about gel-cell batteries today. There was confusion throughout the 1990s when I flew, so why should this new stressful situation bring clarity to that? I was constantly defending my batteries, arguing to keep them, keep them with my chair, label them as mine before they disappeared forever from me.

None of these concerns trumps the security of not being blown to bits while over the Atlantic, I know. Disabled folks want to make it to their destinations in one piece just like everyone else. But they do want to make it to their destinations. And they want to get there without humiliation or harm. If heightened security is the price we pay for living in today's world, which of these safety measures will only be temporary? Is education on treating the disabled with respect when working airport checkpoints part of security training?

What level of discomfort or humiliation is the proper price for safety on airplanes? That question isn't any easier to answer than the question of how much freedom of speech or privacy we should relinquish for national security, but it does impact disabled folks more. And it's worth everyone's consideration.

Crossposted at Echidne of the Snakes
Check there for comments.

Guest blogging for the Goddess

Once again, I'm one of several guest bloggers Echidne of the Snakes has lined up for the next week (starting yesterday), and I'm thrilled she asked me. Always interesting, Echidne's blog is temporarily a rather fascinating mix of blogging folks -- my friends Skylanda and Hybrid, Pseudo-Adrienne, Coturnix, Olvlzl, and me. Since Echidne gets far more traffic at her place, the comments to anything I write for the next week are bound to be more numerous over there. So check it out.

Doug Dawson Was A Man

This comment about my July post on Doug Dawson, the homeless wheelchair-user in Spokane, Washington, who was murdered when set on fire, deserves it's own attention. Al Chidester apparently met Dawson just a few weeks before his death:

I met Doug Dawson on highway 2 west of Spokane on June 2, 2006. He was crossing the road when some plastic bags in which he was carrying what little he had became tangled in his wheelchair spokes in the middle of a traffic lane as the light changed. I pulled over and got him off the road. He was heading back to Spokane after failing to get a ride to Davenport WA to check on his mother’s house and visit a friend. I took him to Davenport for his visit, where he arranged to meet his sister at the House of Charity where his SSI check is mailed so she could help him get a place to stay.

Doug told me that in May he had given a woman friend $300 to go get him an apartment or a room, but that she never came back with money or news of a room. He said that he slept where he could in the alleys and parking lots and that the “House of Charity” didn’t welcome him anymore because he didn’t always observe their rules on alcohol. Doug told me he had lost his leg at 23 (he was nearing his 50th birthday) – hit by a car in Airway Heights. This turned out to be a little misleading, implying some kind of traffic accident. It was actually a freight car he was trying to hop to get to Davenport. He had been drinking and slipped under the wheels. This is according to a housemate of mine who knew him well and was one of the folks who always tried to help Doug.

In the end Doug seemed to have succumbed to the hopelessness of the “cast away as societal trash” situation he was confined to by the callous greed of our “help the rich get richer and we’ll all prosper” society. One of the ways we help the rich get richer is to cut help to the poor and homeless so we can cut rich folks’ taxes. Another way is to criminalize the behavior of the poor, force them to pee in a jar to find work, blame them for their addictions to the alcohol and cigarettes we tax, and the illegally obtained prescription drugs whose real source is the large pharmaceutical companies who are the real pushers. They even advertise on TV. The rich get richer and the poor get prison for their drug “crimes”, and who owns the private prison corporations that have become fashionable hellholes in states like Texas? – the rich, of course.

When the news hit I wrote this song. An email to alchidester@juno.com will get you a free mp3 of this one, or check out my website: www.leftneckrecords.com

Doug Dawson Was A Man
©2006 Alan C. Chidester aka Fiddlin’ Big Al

Doug Dawson was a man
Who held a bottle in his hand
He tipped it ‘til he drained it dry
Then Doug rolled off for some shut-eye

Many years ago, they say,
A bottle took his leg away
Trying to hop a freight car home
Doug slipped beneath the wheels alone

Doug didn’t have a happy life
But there was a fire in his eyes
And a will to live that passed all pain
Though One-Leg Doug became his name

Refrain: “Doug Dawson was a man …”

I picked him up, he was alone
He was still trying to get home
To Davenport on highway 2
Then on back to Spokaloo

With that fire in his eye
Doug said “Sometimes I wish I’d die.
You don’t know what all I go through
And people, they can be so cruel.

My SSI Check comes next day
Perhaps I’ll find some place to stay”
I am so tired of rollin’ on
With not one place I can call home.”

Refrain: “Doug Dawson was a man …”

I dropped him off by Sonnenberg’s
“God bless you, brother,” his last words
As he rolled off among his friends
And onward to his tragic end

What kind of twisted trick
How can people be so sick
To set a man on fire
And watch him burn

Though his killers may have names
There’s many more than two to blame
Obsessed by money, power and fame
We cannot feel another’s pain

He may be lost but so are we
With eyes so blind we cannot see
Our duty to our fellow man
To simply lend a helpin’ hand

Doug Dawson was a man
Who held a bottle in his hand
He had a heart that few could see
But I had some luck, he showed his heart to me

Doug Dawson was a man
Who held a bottle in his hand
He tipped it ‘til he drained it dry
Then Doug rolled off for some shut-eye

Fiddlin’ Big Al, aka Al Chidester

Parallels in Time

I hadn't seen this before, and I haven't watched all of it yet, but Parallels in Time: A History of Developmental Disabilities seems very thorough and interesting.

Navigating

When I began this blog, it was in response to being the only person identifying as disabled in a private online feminist community where I felt constantly compelled to add my disability perspective to every second discussion that occurred. That got tedious for all of us, so my plan was to come here and write about how I interpreted portrayals of disability in books and film. My friends could read up as they chose, and I could get off my soapbox a bit more in our little community.

I knew there'd be some political commentary here now and then, but blogging is an addictive form of narcissism and I had much more to rant about than I suspected. Also, it turns out that every second book and film out there has some portrayal of disability but reviewing them all would slow down my consumption of them. And I'm a movie junkie, so that won't work.

Since high school I've maintained a strategy of not volunteering information about my impairments or health condition as a way to protect my privacy. It comes up often enough through other people's curiosity (and friends' genuine concern) anyway, and in political discussions I've found that my specific physical impairment issues can get confused with personal experiences that are caused by societal conditions.

My specific impairments are irrelevant to the general phenomenon of ableism (and nondisability-centrism -- which is a word I just made up). But increasingly I find I'm interested in sharing specifics to the extent that they might help me explore and discuss the variations in disability experiences that social reactions to various impairments create. I've been moving along the spectrum of ability my whole life (as is everyone, actually) and I think the changes in my experiences are relevant to many disability issues I might blog about. Disability blogging has also been exploding all over, so there's more opportunity to share variations of experiences as well as commonalities.

So. I'm going to be writing some stuff that includes more specific details about my impairments, though I don't yet know how much or what boundaries will make me comfortable. I'm reserving the right to answer or not answer any questions that might arise. I'm saying up front that whatever limits I impose are not about being coy or mysterious, though I'm pretty good at both, aren't I? Anyway, we'll see how it goes. The general theme of this blog remains the same.

Saturday Slumgullion #7

• Mark Siegel of The 19th Floor comments on the courting of disabled voters in Maryland by Republican Governor Robert Ehrlich. Ehrlich's blind running mate, Kristen Cox, and his record on serving disabled constituents both suggest he may even be committed beyond election day.

• Wheelchair Dancer has an excellent list of do's and don'ts on "How to push a wheelchair" that covers everything I would have thought of and more.

• A British man visiting Florida set off airport alarms, was strip searched and perused by sniffer dogs, all because he'd had radioactive iodine therapy six weeks earlier. Via Ouch!

• John Kelly at NAG checks out a different sidewalk configuration to see if it makes wheelchairs and their users any happier than the trendy brick that can be so painful to travel over.

• Femimonkey at Live Journal's Disabled Rage briefly explains how cell phone companies make their technology inaccessible to the blind when it wouldn't have to be.

• A Japanese insurance company claims several Japanese travelers pronounced "brain dead" in Canada and the United States recovered back at home. Of the nine clients the company talks about, the three who were flown home improved while the six who remained in Canada and the United States died.

• Stephen Kuusisto of Planet of the Blind comments on an old Rolling Stone interview he read where John Lennon expresses disgust at seeing cripples sitting up front at a Beatle's concert. Lennon imagined they were there to be healed. Imagine that.

• Sara at Moving Right Along cracks me right up with a picture of herself. It's the first photo of the post.

• Joseph at Deaf in the City discusses sentimental myths about the ability to hear and how much hearing people actually get out of the music they enjoy.

• Along the Spectrum provides a brief review of the Joss Whedon flick Serenity that examines the relationship between River and her brother Simon in terms of how one should treat someone with autism.

Movie review: Tsotsi

The 2005 Academy Award for Best Foreign Language Film is only one of many awards Tsotsi has won. Johannesburg slang for "thug," the "tsotsi" of the story shoots a woman and steals her car, only to find an infant in the back seat. Over the course of six days, Tsotsi recalls his own childhood as he struggles to care for the baby. Despite the violent world he lives in, Tsotsi finds the baby stirring his own buried feelings of loss and abandonment and his humanity.

Shortly after Tsotsi has taken the baby home, he terrorizes a paralyzed beggar, accusing him first of faking his disability, then demanding the man's money. When he finally asks the man why he goes on living when it means "living like a crippled dog," the man replies that he enjoys the warmth of sunshine on his face. This begins Tsotsi's troubled quest for a life beyond dispassionate violence.

Since the infant cannot speak in defense of it's own life, the disabled man symbolically plays the role of helplessness for him. Tsotsi unconsciously seeks out the cripple, acting with belligerence and curiosity. To his question, he receives an answer about the intangible qualities that make life valuable for even the low and abandoned of society.

The story is much bigger and more beautiful than this tension-filled scene with the disabled man, but it contains the seed of the film's humanity. Disability is used to symbolize helplessness in order to voice the value of the stolen baby's life to the young thug. Additionally, the devastation of AIDS is a subtle presence in the film, showing how racism, poverty, and disability interact together in today's Africa.

Movie review: How's Your News?

The hilarious and charming documentary How's Your News? was released in 1999, but I'm glad I've seen the DVD version with special features clips that make the film a more rounded experience. The film follows five people with developmental and physical disabilities as they travel the country in a hand-painted RV interviewing people they meet.

This movie is something of a litmus test into your own deep feelings about interacting with developmentally and/or physically disabled folks since you can't help imagining how you would react to an attempt to be interviewed. And you can see how nondisabled people in the film feel as they either pass the interviewers by or engage them in conversation. True to my experience, one of the most willing ends up being a hollering streetcorner evangelist -- something I find both funny and sad.

There's Robert Bird, who understands what other people say just fine, but has some sort of speech impediment that makes his own words unintelligible. His report from the Continental Divide is the highlight of the film for me. He makes perfect sense. And not. Robert's conversations with strangers on the NYC streets are fascinating to watch.

Reporter Ronnie Simonsen likes to do impersonations of celebrities for the people he interviews. He's interviewed several celebrities in the past, and keeps in touch with many by mail, including Chad Everett, his "Spiritual Brother," whom Ronnie has a deep and abiding love for because of his role as Dr. Joe Gannon on TV's Medical Center back in the 1970s. The DVD special features section offers the climactic scene of Ronnie's quest to meet Chad, and includes his Ode to Chad Everett, which stuck in my head like a jubilant earworm for days.

When the crew reaches Venice Beach, California, their interview success increases, proving that abnormal is just normal in the land of LA. Sean Costello, Susan Harrington and Larry Perry all meet folks almost as interesting as themselves.

I wish the documentary had a sequel, though there is a cd of music (since the reporters love to sing), some fantastic interview footage from the 2004 presidential election (including Rob Corddry, G. Gordon Liddy, Hillary Clinton, Andre 3000, Triumph the Insult Dog, Jerry Springer, Newt Gingrich and Ben Affleck), and current news about the film's stars at the How's Your News? website.

If you haven't spent much time around people with developmental disabilities, the documentary is a low-pressure way to meet a few. If you have some friends with developmental disabilities, these reporters will be a delight to follow as they tour the U.S.

Frequently bizarre happenings

Agent Fang at Fangworld explains her latest weird experience while traveling and asks the question:

I sometimes wonder if I'm unlucky when it comes to working away accomodation, or if these frequently bizarre happenings are something every disabled person experiences?

Generally, I do believe disabled people experience frequently bizarre happenings for a variety of reasons. As disabled dude Neil Marcus once noted, "disability is not a 'brave struggle' or 'courage in the face of adversity'... disability is an art. It's an ingenious way to live." Any situation requiring an original, creative approach is probably likely to end up being bizarre more often than a situation that doesn't require ingenuity. I can fairly say that as a person who uses a wheelchair I have had hundreds of experiences both social and physical that the nondisabled people I know have never experienced personally.

Example: I've been carried into a building and up three flights of stairs by a firefighter. There'd been a kitchen fire in someone else's apartment and the elevator couldn't be turned on again until the building inspector came the next day.

I have more, of course. The most recent are from my extended hospital stay, probably because many things happening in a hospital are bizarre to most people. But more on those another day.

Am I right? Agent Fang isn't unlucky, she's disabled and therefore lives in the world of weird. Disabled or not, do you have frequent bizarre happenings and what do you think is their cause?

Talking language

Recently, Bookslut's Jessa Crispin said this while commenting on Suzanne Braun Levine's Inventing the Rest of Our Lives: Women in Second Adulthood:

The last ten years or so has seen in a rise in what I like to call the Special Olympics version of feminism. Nothing you do is bad or wrong, because it's all about finding the authentic version of you. (Thanks, Oprah.) Leave your husband and abandon your children in order to go have casual sex with a yoga instructor? Good for you, you're getting in touch with yourself as a sexual being. Give up sex entirely and tell everyone that (solo) flamenco dancing is all you need anymore? Good for you, you're rejecting society's pressure on women to be sexual beings. Quit your high paying job and become a stay at home mother? Good for you, you're doing the most important work in the world.

According to the City Journal, this version of feminism has taken over the brains of formerly influential and important feminist thinkers. As recently stated by Marjane Satrapi, "I don't know why people, when they become older, become stupider."

The Special Olympics of feminism. Taken with the Satrapi quote, my guess is Crispin means that the last decade of feminism has been a competition of stupid beliefs about what empowers women. Perhaps she's thinking it's a competition among "retarded" beliefs, which really isn't synonymous with "stupid."

Noting the examples Crispin says are about feminism (I'm not familiar with either of the books linked to at Amazon), I'd call it a competition of amusing political justifications women make for their lives. Crispin is snappier but crueler. No interpretation of her phrasing suggests anything but unkindness in her reference to developmentally disabled folks.

Not that the joke is original. Unfortunately, it's all too common. Kestrell at Blog of a Blind Bookworm noticed it too.

What we really look like

I've been thinking a lot lately about what people with disabilities look like and how it influences our interaction with the nondisabled in public. What disabled people are supposed to look like is part of the interaction too. I've seen several films recently where appearance was definitely part of the tension of personal encounters, and I spent yesterday (101° in Minnesota, yo!) out and about in Minneapolis paying attention to possible changes in how nondisabled strangers treat me. When I thought of it. Mostly I just had fun.

I had my quarterly appointment to get my PEG tube changed for a newer shinier one. I say that like I've been doing this for years, but I've only had a feeding tube since November when I nearly died of malnutrition, my stomach refused to do any more digesting, I got aspiration pneumonia from constant vomiting and took a helicopter ride. Then I woke up with my new friend, PEGgy. This particular incident began with a delicious Chipotle's burrito and I now mourn the fact that the thought of eating another someday only makes me think of hurling.

Anyway. The tube gets replaced every three months. (Incidentally, Dr. Perky had told me they never need replacing when I had expressly told her mine was starting to feel floppy and asked if she would check on when the switch might need to occur.) So every few months now I will migrate into The Cities to the hospital where my stoma was born for this amazing procedure. And it is amazing -- I watch on an x-ray monitor, completely unsedated, while someone pokes a guidewire down the tube, deflates the balloon in my stomach, pulls out the old tube and threads in the new one like he's snaking a drain. It takes less than five minutes and it's totally cool to watch. But I digress.

Anyone who has experienced both limping and using a wheelchair will tell you that public reactions to the two appearances differ. Same with manual chair versus power chair, white cane versus guide dog, invisible impairment versus visible one(s), and, Ballastexistenz claims, with dog versus sans dog for her as a person with autism. Visual differences cue stereotypes, and breathing on one's own versus towing a ventilator on my scooter also makes a discernible difference. Most notably, even fewer people are willing to make eye contact. The only spontaneous smile I received from someone I didn't need to interact with was from a young Somali woman selling beautiful silk clothing at the newish Midtown Global Market, also known as the most fabulous food court in the entire state, by the way. Jamaican jerk chicken. Mmmmm. Again, I digress.

(Oh, wait. Can anyone familiar with Pocky and the astounding variety of flavors it comes in tell me what's up with the "Men's Pocky"? Is that man-flavored or candy viagra, or what?)

Okay, so I know it's fear of difference and the old "there-but-for-the-grace-of" thing. And that's fed by a history of segregation and institutionalization. I'm 37, by the way, and Americans in wheelchairs who are my age are pretty much the first generation allowed to attend public school with everyone else. Hollywood hiring beautiful nondisabled actors to portray us on film doesn't help fearful people get used to being around actual gimpy bodies either.

Which brings me to these photos of the New York celebration of the ADA's anniversary last week. Real people. And some hot transportation I covet. Great photos from Aleja at No Pity.

Saturday Slumgullion #6

• John Carr at The Main Bang writes about the lack of access at work for air traffic controllers in wheelchairs. It's not always progress that makes a place accessible -- without vigilance, building and equipment improvements can and do ruin access for disabled people. Carr notes how this will cost one man his job. (Another example of "improvements" ruining access: Movie theaters with new stadium seating.)

• BBC Radio has a new comedy program called Vent, about the dreams and thoughts of a man in a hospital on a ventilator and in a coma. Despite the pun of the title, the vent itself is not synonymous with coma and I wish it had a different name. To read the BBC blurb about the show, scroll halfway down the page, here.

• Medical Humanities hosts the newest Grand Rounds carnival from the blogging medical community, which includes several discussions about the mercy killing/euthanasia arrests of a doctor and two nurses in New Orleans for actions during Hurricane Katrina.

• Ruth at Wheelie Catholic writes about being a quad and trying to pass as somewhat less impaired:

"In fact, it can be fun to pass as a para. If you're clever, you can fool people some of the time. Until you try to eat in front of them or whatever. Or go in your wallet. Or put a key in a door.

When I get 'caught' trying to pass as a para, some people look at me and say 'Your arms are affected too?' Sometimes people start to cry. I hate that."

• Denise at BlogHer relates the story of former blogger Madrigal of Agony who was inexplicably "dooced" out of her disability coverage for blogging about her daily pain.

• BallastExistenz writes about her personal experiences with forced drugging to control her autistic behavior. Also, some info about MindFreedom International, the Amnesty International of biological psychiatry.

• The Phat Girl Speaks shares what I think is a hilarious story about a boss wary of not being politically correct.

• Wheelchair Dancer discusses how the ADA not only doesn't always guarantee access to wheelchair-using theater-goers, stage access is extremely rare. Of course, this makes employing disabled artists problematic, as well. A long while ago, I noted this situation at the Kodak Theater where the Oscar Awards take place.

Sweet Sixteen for the ADA

One of my old posts, looking at a French ad campaign, looks at a completely alternative view of disability, where accessibility is an integrated part of life.

Often, the argument against compliance to the ADA is that disabled people are demanding something "extra" and their quest for equality oppresses business owners or employers who must suddenly provide something additional to the disabled person that no one else is asking for. The implied belief is that the nondisabled person never asks for anything "extra," though this is not really true. Rather, the built world is "conceived" to include the extras they might need.

The excuse of architecture examines how inaccessibility can create the justification for discrimination.

The belief that disabled people's exclusion from mainstream society is benign neglect is mostly an illusion. Ask any architect if he considers who will use his building when he designs it. Consider that disabled folk have been a part of the human experience since time began. Modern science has altered the number of people surviving health crises and age, and it's given us elevators and TTY machines, but ramps existed before steps were invented and yet we lack them everywhere.

But for a truly exciting list of writings on disability, check out Disability Studies, Temple U,'s latest blog roundup.

Update on Stevie

About half the people finding their way to this site in the last week have been looking for one of three things: amazing variations on "gimp porn", more information about the talented writer, lawyer and crip activist Harriet McBryde Johnson, and an update on Stevie, the subject of Steve James' 2003 documentary film. With a little google research, I can satisfy your curiosity on the latter.

For a recap on why Stevie was a film of interest for this blog, check out my review of last August.

For the update on Stevie Fletcher, the man featured in the film, check out the sidebar here. You'll have to scroll down quite a ways. Among the revelations of a 2005 interview with the man who directed Stevie is this:

Have you talked to Stevie lately?
We went down in December to visit him in prison, and we're gonna go before Sundance. He's doin' okay. I think for being in prison he's doing fine, but he is gonna serve his entire 10-year sentence--just as I say at the end of the film, it's still true that he has not been an ideal prisoner. And I still have not been able to show him the film.

Go read the rest.

Utah neighbor's offensive sign targets autistic teen

Carrie Heaton does her best to keep watch over her curious and cognitively disabled 13-year-old son without being too confining.

Still, the Nephi teen slips out unnoticed on occasion and wanders the neighborhood, sometimes entering and rifling through people's homes, according to police. Neighbors to the south have complained.

But Heaton was surprised Wednesday when long-simmering tensions boiled over and her neighbors erected a sign in their front yard warning, "CAUTION, RETARD'S IN AREA."

Read the rest here.

Saturday Slumgullion #5

• Stuart Hughes of Beyond Northern Iraq reports a more personal story of being back in a war zone covering news for the BBC.

• Popular Science magazine covers the quest by some injured American soldiers for better-working prothestics. There's an informative slideshow explaining current capabilities for artificial limbs versus future hopes for the technology.

• A back injury enlightens a writer in Tallahassee about the daily benefits of an enforced ADA. The 16th anniversary of the ADA's passage is this coming Wednesday, July 26, by the way. It's good to take note of things the law has accomplished.

• Quite likely it's an urban legend, but the story of a disabled Chinese migrant worker continues to travel the internet.

• A California DUI attorney muses about the applicability of the ADA to drunk drivers. If alcoholism is a disease, is drunk driving a choice for his defendants? I'd sooner muse about why the ADA isn't helping mentally disabled people on death row, but the logical argument is similar.

• Aishwarya at Kaleidoglide compares left-handedness and the need for Southpaw accommodations to disability and accommodations. Interesting approach.

• Ragged Edge readers discuss the man in New York who claims nude sun-bathing for a skin condition and his rat terrier's companionship for 9/11-caused PTSD are both accommodations covered by the ADA.

• Encarne Conde has a blog that pictures (and discusses in Spanish) all sorts of wholesome crip events.

• Autism Diva discusses her concerns with Kellogg now that the cereal company has teamed with Autism Speaks, the organization responsible for the "disgusting video" Autism Every Day.

• Katja at Broken Clay has the story of how Alaska Airlines supported the 26th annual Disabled Veterans Wheelchair Games by working to fly everyone up to Anchorage. The picture at right is the gimp parade to an airplane.

• Julia Shumko at You Have to be Deaf to Understand describes how the U.S. Social Security system boxes in a disabled person when becoming fully employed means less income and fewer benefits than working just under the income limit SS allows. Via Browser Life.

• I'm Funny Too at Did I Miss Something? aptly explains her feelings about Bush's stem cell veto, science, and the curing of disabled folks. She articulates what I wish I'd said as well.

Spooky new technology

This is no longer science fiction, it's real. I wonder why exactly a bracelet or other external accessory containing the same type of information has been bypassed in favor of an implanted device. It presents some tricky issues for disabled and chronically ill folks if this becomes popular in the medical community.

Technical Question

Last year, I had been adding html ALT descriptions to any images I posted. Then I switched from Explorer to Mozilla Firefox and those ALT descriptions stopped showing up. Only I didn't realize until recently that it was my browser that was less accessible for people who need text descriptions of images. Does anyone know either a patch for Mozilla or a different way to tag images so that visually impaired people can get these descriptions regardless of what browser they use? Any help would be appreciated.

If in Chicago or The Real Gimp Parade

Ah, I miss the Windy City. I went to high school in that bastion of yuppieland, Naperville, which I don't miss all that much. But Chicago itself? I often feel homesick despite my Minnesotan origins.

This weekend is an excellent time to be in Chicago. The third annual Disability Pride Parade is Saturday, with a noon program in Daley Plaza, where the parade ends. Also, Saturday night there is a mini-film fest that looks exciting.

If I could be there, I'd also stop up at Women & Children First to browse, and grab some dolmeh felfel for dinner at Reza's, both in Andersonville. Ahh, Chicago!

Photo from the 2004 parade. See others.

The Crip and the Fat Chick

This is the best thing I've read lately. Go. Read.

Via Sinister Girl

Explanation of Benefits or Why I'm a Bad Risk for Employers

From the private insurance company which would never have accepted me as a client if my parents hadn't gotten me coverage at birth:

Explanation of Benefits:
THIS IS NOT A BILL

Hospital A
....
11/14/05-12/08/05
Hospital Incidentals 32,241.65
Hospital Incidentals 518.43
Hospital Incidentals 13,860.65
Hospital Incidentals 3,926.12
Hospital Incidentals 195.39
....

[Nine pages of this]

....

Hospital A may bill you: $459,880.33
Hospital B may bill you: $27,347.44
Hospital C may bill you: $10,539.63

....

Studies have shown that the Sonicare toothbrush removes more plaque than brushing with a regular toothbrush. For more information, go to www.brushwith[privateinsuranceco].com.

Because the first thing you think about after learning you may be billed a half million dollars is whether or not you are using the best toothbrush.

American Association on Mental Retardation votes for name change

It's been a long time coming. The American Association on Mental Retardation, founded in 1876 (and then called the Association of Medical Officers of American Institutions for Idiotic and Feebleminded Persons), voted overwhelmingly last month to change the organization's name to the American Association on Developmental and Intellectual Disabilities.

AADID President Valerie Bradley said the change was driven mainly by individuals with developmental and intellectual disabilities who are part of the self-advocacy movement and dislike the term "retarded" because of the stigma connected to it. Ragged Edge has the story on the vote and the name change trend.

For the last year or two, I've closely followed any use of the terms "retard," "retarded," and "idiot" I've seen in the blogworld, sometimes speaking up but often just observing the commentary. Even just limiting my surveillance to the feminist blogosphere, there's been perjorative aplenty with opinions about the appropriateness/offensiveness of these terms varying widely. While nondisabled folks are busy debating what's offensive, whether language should be policed, and if a past medical term can legitimately be considered pejorative now, the name change at the AADID means that the organization is responding to the activism of the people it's designed to serve.

Here's a little history on some of the pressure people with developmental and intellectual disabilities applied to urge the name change: "Self-advocacy" usually refers to the civil rights efforts of people with developmental and intellectual disabilities as they speak for themselves, since historically they've been institutionalized and not considered capable of participating in decisions about their lives. SABE (Self Advocates Becoming Empowered) is a national self-advocacy organization. In February of 2005, SABE was one of eleven organizations planning to gather that fall for a summit as the collective Alliance for Full Participation, but instead SABE lodged a complaint to the other ten, written by Chester Finn:

[Our] executive committee met twice and decided that SABE will no longer be a part of the AFP and SABE will not participate in the Summit because of the ongoing problems of not being treated with respect and because [other AFP members] went back on their word. What kind of problems did we have? There were three major problems. First, some of the AFP members were not respectful toward the SABE board members. We did not feel like we were really being heard.... Second, our level of participation was not as interactive as what SABE wanted.... Third, some of the AFP members decided to not honor our verbal agreement [to waive our Summit fee] and requested the $5,000.

The response, written for the group by Steven Eidelman,The Arc's executive director, was apologetic and hopeful:

We regret any miscommunications or misunderstandings, and we hope that our partnership can begin again. The leadership of the Alliance for Full Participation is absolutely hopeful that reconciliation with SABE can be reached, and we will continue to work to achieve this outcome. Should this not occur, the AFP is committed to ensuring that the voice of self advocates is heard at this Summit.

Finn's elegant answer to the apology consisted of ten demands -- one for each organization committed to helping disabled people -- beginning with the ultimatum that the AAMR change its name:

If the Alliance or individual organizations really want to work with us, they need to do the following:

1. AAMR needs to stop using the word mental retardation and change their name. SABE worked with the President’s Council for People with Intellectual Disabilities to change their name. In the Civil Rights movement, the “N” word was hurtful to African Americans. Likewise, the “M” word is offensive to individuals with intellectual and other developmental disabilities. SABE challenges AAMR to educate their members in order to change their organization’s name.

and, in summary:

SABE is willing to work with you on these issues. If you really believe in our issues and you want to win back our trust, you will join us at the table in achieving the goals of closing institutions and nursing homes, self-determination, individualized services, selfdirected supports, and money following the person. All of these goals are related to making real lives for persons with disabilities.

And once again, in flyer form, SABE reiterates:

We have told you what is important to us
Get rid of the infamous and hurtful “r” word, do not label us
We will not put up with
The “r” word continuing as part of an organization’s name
even as initials
If you are working with me and for me then do not disrespect me

Apparently, one result of this activism was the name change from AAMR to AADID. Of course, the reference to the "r" word being present in an organization's initials refers to The Arc. Although the full name is no longer used, the acronym does still stand for The Association for Retarded Citizens.

Suitcases reveal past of state hospital inmates

Hundreds of dusty suitcases were found in the attic of the Willard Psychiatric Center near Albany, NY, closed in 1995. They belonged to the inmates of the asylum who came to stay and died at the institution, many to be buried in unmarked graves on the hospital grounds.

Frank, pictured above, was a WWII vet from Brooklyn who caused a disturbance at a restaurant in 1945 because he was served a meal on a broken plate. Instead of being arrested, he was committed to a psychiatric hospital by the police. He bounced from one institution to another, spending three years at Willard and dying at a Pittsburgh VA hospital in 1984 at age 74. He had never seen freedom after that day at the restaurant and spent nearly 40 years -- over half his life -- in institutions.

Via Penny Richards at Disability Studies, Temple U., the stories of other inmates, and the poignant photos of the contents of their suitcases can be viewed. It's an online museum that portrays some of the most haunting life stories I've seen in a long time. Follow the links to browse through the collection.

Things that crack me up, #7

In this video of a French talk show where a couple disabled people are interviewed, the interviewer gets the giggles because the man he's talking to has a high-pitched voice. I haven't taken the time to even try to apply my meager knowledge of French to a translation of what's being said. But I find the giggling contagious. The whole thing looks like a comedy skit. What's funnier than someone inappropriately laughing and not being able to stop themselves? Nothing, I say, even though the circumstances may be unkind.

Disabled man's body digitally blurred for TV

Tonight on ABC's Primetime they featured "Adam the Healer," a 19-year-old Canadian who claims to have healing powers. The program talked to him and followed four women who had sought cures through his superpower ability to see and rearrange auras. One of the women is the wife of Canadian soldier, Lieut. Trevor Greene, whose head was split open with an axe while he served in Afghanistan. He was in a coma for three weeks. Sometime after Adam was consulted long-distance, the soldier slowly came out of his coma and now has limited speech ability.

When Adam visited Greene in person, Primetime blurred the entire image of the man in his wheelchair. Not for anonymity, but because he's a "pale shadow" of his former self. Greene appeared to be unable to use his arms or his legs.

Adam wasn't able to stay long with the couple. He was freaked out by Greene's appearance and took the first chance he could to run off. Greene remains in hospital and his prognosis is uncertain, though his wife has faith in both Adam and her husband's full recovery. Her need for his cure probably has something to do with the decision to blur out his video image as a disabled man, though Primetime wasn't completely clear about that.

The most disturbing part of this digital anonymity is that it was presented as an entirely unremarkable and unproblematic response to a severe injury. There's denial here, of course, but what else? What else.

Incidentally, Adam holds workshops for those needing healing, but it says at his website under "rules for the workshop":

6: You cannot bring noisy medical equipment into the workshop.

Apparently, he can't or won't rearrange the auras of people with ventilators. And rule number seven is that you can't show up with a persistent cough. So heal thyself a little bit, then go see Adam for the full cure.

"Exotic amputees" needed for Pirates 3

An open casting call for Pirates of the Caribbean 3:

Seeking Pirates -- men age 18+, all shapes and sizes, all ethnicities: Asian, Spanish, French, African, Syrian, Lebanese, Middle Eastern, Turkish, Armenian, Arab, Persian, Caucasian, South American, Pacific Islander, Eskimo, etc...

You must be an extreme character type! We need extremely skinny, very tall, very short, hunchback, little people, unusual facial features and body types, exotic amputees, albinos, etc.

I have to say that an only male pirate cast bothers me as much as an all "grotesque" cast. Are you odd-looking? We have just the job for you but only if you're a goofy-looking guy.

I'll pretty much go to any film to see Johnny Depp (he's so purty), but what does it mean when the main characters are all flawlessly gorgeous and all the extras are just a new exhibit of circus freaks?

Via No Pity

Things that crack me up, #6

To the person in the Philippines who came here searching for "frog sex porn" -- disappointing, eh?