Cultural events roundup

• Commenting on an earlier entry here, artist Riva Lehrer announces an art show on disability that will show at the Chicago Cultural Center in April 2006. She's accepting artist recommendations and inquiries through the end of July 2005 and will be at the SDS (Society for Disability Studies) conference in San Francisco this June. Check here for her contact info and further details.
• Time is short: The Inglis House Poetry Contest deadline is June 1, 2005. One entry category is for poetry specifically about the disability experience, and a second category is for poetry by disabled folk about any topic. Courtesy of DisPoet.
• Superfest, the International Disability Film Festival, is next weekend in Berkeley, California: Film screenings are June 4 and 5, 12:30-5 p.m., at La Pena Cultural Center, 3105 Shattuck Ave. Tickets are $5-$20/day sliding scale and will be sold at the door. A "Meet the Makers" Reception will take place on June 5, 6-7 p.m., followed by an awards ceremony from 7-9 p.m. The reception and awards ceremony are free and open to the public. (One film features the art of Riva Lehrer, btw.)
• On a less-culturally interesting note, my email address has changed.

Redux: Beyond Affliction

Seven years ago, NPR did a week-long Talk of the Nation series on disability called "Beyond Affliction." The first 50-minute discussion explains how disability is a cultural experience. The most noteworthy thing here is perhaps that a national radio program offers a discussion between a reporter, a professor, the [then] Assistant Secretary for Special Education and Rehabilitation Services, a cartoonist and a businessman -- all individuals with disabilities. Well, and the nondisabled call-in rabble. It's still a relevant discussion all these years later, and the dynamic between the panel of experts and the general public is interesting.

For my Dad

Happy Syttende Mai!


And an amusing disability related story from Norway, even though it's not recent news.

Euthanasia debate in the UK

Guardian article, via Sam at Disability Law.

Note that the "Useful Links" at the bottom of the Guardian article are all pro-euthanasia sites.

Wheelchair DUIs

There's a lot I'd like to say about this if I didn't feel sick today. The links and some excerpts will have to tell the story on their own.

Man in wheelchair ticketed for DUI, wheelchair confiscated (courtesy of Kalahara at No Pity)

A Hampshire man trying to drive his motorized wheelchair to a grocery store spent a night in jail this week after police charged him with drunken driving. But Huntley police voided the ticket the next morning after realizing that drunken-driving laws do not apply to people in wheelchairs.

While the man was tranferred to another jail for an unrelated warrant, his wheelchair did not make the trip with him:

Huntley police still have Newman's wheelchair, and they say they will keep it until either Newman or someone he knows picks it up. Newman can walk, with difficulty, without the wheelchair, [Police Chief] Ciombor said.

A Florida case in 2004: Woman fights wheelchair DUI charge

Under Florida law, a motor vehicle is defined as any self-propelled vehicle, including a bicycle, motorized scooter and an assistive mobility device.

Some brief blog commentary on her case provides this quote from a newspaper:

Judge Peyton Hyslop, in one of his last rulings from the bench, said the wheelchair essentially was the woman's legs and that charging her in this case would be tantamount to bringing DUI charges against anyone who was drunk and standing up.....Hyslop said under those terms, an able-bodied totally intoxicated person sitting next to the impaired disabled person "would not be subject to such arrest, and only to arrest if disorderly".

Another look at Harriet McBryde Johnson

Okay, not a look at her, though I love the picture at the top of this January 2004 article where she was named New Mobility magazine's Person of the Year. She does gimpy with class. It means a lot to have media that present real images of real disabled people and their bodies. If Hollywood put more actual disabled people on film maybe we wouldn't look so scary to the average nondisabled person, just like average-sized women wouldn't look so overweight compared to stick-thin models (with breast implants) who supposedly represent natural womanhood.

Anyway. I meant another look at "Unspeakable Conversations," the amazing article McBryde Johnson wrote in 2003 for The New York Times Magazine. That article and the response to it were the stepping stone to McBryde Johnson's new book, Too Late to Die Young: Nearly True Tales from a Life, recently reviewed by Ragged Edge. I plan to review it too, once I get my copy and have some time with it.

ICF photo contest winners of the past

Some fascinating and haunting photos on health and disability found here and here.

Blind folks and child care

In Colorado, this story (via Sam):

Christine and Thomas Hutchinson can open their day-care center after all, if the state doesn't appeal a judge's ruling that their blindness can't prevent them from obtaining a state license.... The state Department of Human Services had denied the couple a license to operate a day-care center in March 2004, solely because both of them are blind, administrative law Judge Matthew E. Norwood said in an opinion signed May 4.

The department denied the application, despite a list of nine conditions proposed by the Hutchinsons to accommodate their disabilities, including limiting their center to four children, modifying their home so children couldn't leave without permission, preparing with parents instructions in Braille for dispensing children's medications, having cell phone contact with parents available, and having sighted people attend field trips and help with paperwork.

This case of blind people being considered incapable of caring for children isn't unique. In December of 2004, California Child Protective Services attempted to take custody of the newborn boy of Marco and Adeline Zepeda after the couple had made inquiries at the hospital about home health care services. The full account of their ordeal and the 2004 case of Alabama's Tyrone and Pianne Jordan were covered by the National Federation of the Blind as a worrisome new trend in state agencies. Along with the apparent unwillingness to consider blind adults as capable and responsible parents, these two previous accounts reek of classism and racism as well.

As for the Hutchinsons, the state of Colorado has not yet said whether they will appeal the judge's ruling.

Something of a book review: The DaVinci Code

Spoilers in this entry if you are among the six people left who have not read this book.

The DaVinci Code by Dan Brown is one of those books that is a pop culture phenomenon and you feel like you need to read it just to keep up. Before I read the copy someone had passed along to me, I chanced upon a review of the book from a disability perspective by Carolyn Anne Anderson. Only skimming the first half of her review at the time, I saw that the fourth paragraph began like this:

It may just be habit to some writers as they begin to formulate a villain's character, to give them some form of disability.

I didn't finish the review then, but my interest in The DaVinci Code was truly piqued. I wanted to witness Brown's use of disability stereotype for myself. At the same time, I no longer needed to read the book -- this one sentence of Anderson's revealed such a disability cliché that the final plot twist was known to me before I even cracked the book. Not only was the primary villain disabled (polio), his evil nature is the "dramatic secret" of the novel's final moments. Yay.

Well, actually, the villain isn't disabled so much as "crippled." Crippled. Crippled. Did I mention he is crippled? Well, Brown does. Over and over and over as Mr. Crippled Secret Villain limps around and other characters comment on the fact that he is crippled. This is to make sure that the densest reader understands that twisted on the outside means twisted on the inside. Why is he a villain? Because he's crippled and that can drive a person to be not nice.

It turns out that Mr. Limpy also has a henchman who is albino. Physically different means evil, remember. As so often happens, disability is used as metaphor for something else and not left to exist as a natural part of a character on it's own.

There are plenty of other problems with originality in Brown's novel. And disabled people can join the Catholic church in finding something in the book that's offensive. I knew I wasn't diving into fine literature when I read The DaVinci Code, but you know a stereotype is really tired when it gives away the ending of a thriller to use it at all.

Blogrolling on with Audacity

There's some noise in the blogosphere recently about deleting blogrolls because they contribute toward a meritless kind of popularity contest. I'm adding to the blogroll here every chance I get, especially to the list of disabled folks who write about how the personal is political for them. It's no popularity contest here, but an urgent need to find each other and share. Here's a great online disability magazine I came across yesterday in someone else's blogroll. I can't believe I've never heard of it before. Now it lives on my blogroll too.

Disability organizations file amicus brief in Gonzales v. Oregon

From today's press release by Not Dead Yet:

Eleven prominent disability organizations and one university-based policy center filed a friend of the court brief today with the U.S. Supreme Court in the Oregon assisted suicide case. Not Dead Yet, the leading national disability rights organization opposing legalization of assisted suicide, filed the brief, which supports the U.S. Department of Justice (DOJ) appeal of the decision in the lower court, which upheld Oregon's assisted suicide law.

A summary of the argument (found in the brief) includes this statement:

When applied only to people with significant or even "terminal" health impairments, Oregon's assisted suicide law encourages the disabled to end their lives - and guarantees such efforts will be successful - while other state laws concurrently discourage non-disabled persons from doing so. Assisted suicide laws deny people with disabilities the benefit of programs and laws that prevent suicide and are the ultimate legal judgment that the life of a person with a disability is not as worthwhile as that of a non-disabled person.

Assisted suicide also raises serious ethical concerns regarding the medical profession's treatment of the disabled. It requires doctors to make difficult, if not impossible, determinations of a person's competency and life expectancy, the consequences of which are both ultimate and irreversible. The availability of assisted suicide also distracts from the determination whether a person's desire to die might be lifted with improved treatment, community-based health care or other measures that improve a person's independence and dignity.

Diane Coleman, president and founder of NDY, explains succinctly:

If assisted suicide were really about personal autonomy, it would be available to all suicidal people. But really, assisted suicide statutes are the ultimate societal judgment that the life of a person with a disability is not as worthwhile as that of a non-disabled person.

Love of imperfection

A couple old posts from Real Live Preacher don't quite find a tone of disability acceptance and pride, but are nonetheless lovely to me even if the author doesn't realize he's ruminating on issues of bodily normality, self-image and disability. In the first essay, RLP writes about his young daughter's vision impairment and how the unique gestures of accommodation she makes for her bifocals are simply part of the child he loves.

Her glasses make her eyes look bigger than they really are, giving her a “Hummel” kind of cuteness. If you stand close to her, there is a little magic zone where she isn’t sure which lens will best render your face. She will cock her head back to try the bottom lens, then drop her face down and try the top.

I’ve been known to find this zone and stay there until someone drags me away.

In a second, later entry, RLP expresses poignantly his regret (mixed with understandable happiness) that her vision improves until his little girl no longer needs her bifocals. He's wistful about her better eyesight and how it changes things for himself and for her, and he expresses guilt about this wistfullness even as he recognizes his love for his daughter's imperfections is something precious and important.

A very good part of me loved her bifocals. It’s one of the best parts of me, in fact. I loved the way she tilted her head with bifocals, like an old woman. So cute in a six-year-old. She would tilt back to read and forward when looking at me across the table.

I’m stunned to find the seed of Munchausen in me. I’d like to keep the bifocals for my own sake. I would. This kind of evil is always lurking very close to the best in us. It’s okay. I see it. I’ve named it. It has no power over me.

The ambiguity of his feelings is not evil to me, but it is very powerful. It's part of disability pride and the lack of interest in a cure that so many disabled folks hold and which nondisabled folks find unbelievable. It's because impairments are a natural part of life. It's the sheer (perhaps even divine?) ordinariness of human imperfection and how it paradoxically renders each person memorable and unique, creating individual perception, creativity, gesture, and connection to the ones we love.

As his daughter experiences vision without the bifocal magnification she was used to, RLP does not name her new vision as superior to her previous way of seeing. He recognizes it is only different.

My little girl lost her worldview, her way of seeing things, and that always hurts. This is good pain, leading to new ways of seeing, so I put my hand on her leg and kept driving. I let her cry. And I was proud of her. Proud that she is so little and bravely shedding her old way of looking at the world. Bravely she takes up this new way of seeing.

Both essays in their entirety are worth reading for their thoughtfulness and sensitivity.

The art of Riva Lehrer

These portraits of disabled people by an artist with a disability aren't new, but I enjoy them.

The Chunky Bastard Monster Step and other good times

One of the difficulties with having a mobility impairment is that even inquiring about accessibility from nondisabled people who truly wish to be helpful often fails to provide any useful information. Or it results in misleading information that further complicates a journey, short or long. A direct inquiry as to whether there are steps, for example, proves to be a meaningless exercise if an unobservant nondisabled person is never bothered enough by their existence to note they are there. I've called ahead to businesses where the person on the phone swears the place is completely wheelchair-friendly, only to arrive and find three steps leading into the ballroom or restaurant and no alternate way inside.

The helpful phone person, when informed, will say something promising like, "Oh. Hmmm."

Or possibly, "Well, we don't get many handicapped people in here."

Agent Fang's excellent blog, Fangworld, describes some recent travel adventures armed only with her wheelchair and wit. It all begins promisingly enough, as it often does:

I started looking at the really big hotels. Got one with a car park attached. Good start. Rang up, had a little chat about access. This is the time to judge whether you are really welcome, or will terrify the staff, who have likely never seen human/wheel combinations before (or will at least act like it). Staff were nice. Asked for suite with handrails and wheelchair access. There was a pause before she explained they only have one suite with access... the mini suite. Didn't sound bad, so I booked it at the standard double price -- she did explain it was a little more usually but for disabled people who couldn't choose the standard room they would put me and Mr F (who's had a two day week this week, v. smug) in the mini suite.

Their arrival, of course, proves to be something of a disappointment:

As we rolled up to the hotel, the first thing immediately apparent was the Small Harmless Step in the website photograph was actually a Chunky Bastard Monster Step. Deep breath. Second was their prestigious 30 space car park was actually a tarmacked area rented from the hotel next door. We looked on in innocent surprise at the tiny narrow spaces, and a faint warning bell sounded in my head as we realised they'd forgotton to reserve us the two I'd been allocated for wide door access. In the end Mr F dropped me off outside the hotel and went to park, whilst I sat in full view of the reception desk, glaring at the monster step and a little sticker on the door saying "We Are Access Friendly".

I am never sure if such proud claims are cluelessness or some sort of legal ass-covering bluff. Maybe just wishful thinking. Anyway, Agent Fang is on yet another little journey, so stay tuned to her blog to hear how that goes.

Happy Birthday Nellie Bly!

Elizabeth Jane Cochrane, born on this day in 1864, was a feminist before the word existed. She was a disability rights advocate too. Her journalism career began at age 23 after her sharp reply to a Pittsburgh, Pennsylvania, newspaper article that criticized working women. Under the name "Nellie Bly" she became known as the "best reporter in America" at the end of the 19th century. She is known for her journalistic courage in committing herself to a mental asylum for ten days to uncover the practices there. Her reports -- available online in full text as Ten Days in a Mad-House -- led to a state investigation of New York City's Blackwell Island asylum and eventually to better funding and reforms in patient care.

She was a researcher, an investigative reporter, an industrialist and a reformer. In 1873, she set out to best French author Jules Verne's fictional character who traveled Around the World in 80 Days. She did it in less than 73. Later, she was the first female to cover the front lines in World War I.

(Via Penny Richards at Disability Studies, Temple U.)

Daughter denied Colorado driver's permit because of blind mother

This story via Sam at Disability Law. Here's an excerpt:

Julie Barber is 15, with a learner's permit and a burning desire to get behind the wheel of a car. But due to a combination of a recent change in state law and her mother's severe vision problems, she won't be driving anytime soon.

In a lawsuit filed Monday in U.S. District Court in Denver, Barber and her mother contend they are victims of discrimination. That's because the state requires a parent or guardian with a Colorado driver's license to be in the car with Julie. But her mother doesn't have a license, and state authorities are refusing to allow the Barbers to substitute another adult.

Marcia Barber, 50, contends Colorado Attorney General John Suthers suggested she assign legal guardianship of her daughter to someone else so the girl could drive, according to the lawsuit.

Buffalo firefighter suddenly improves after ten years without memories

Donald Herbert, a firefighter from Buffalo, New York, has lived in a nursing home for the past seven years, mostly silent, nearly blind and with severe memory impairment since injuries leading to oxygen deprivation occured at an apartment fire in 1995. Over this past weekend, he suddenly became animated and asked for his family, believing he had lost only about three months time and not the ten years that have changed his youngest son -- a toddler -- into a 13-year-old boy who answered the phone when Herbert had a nurse call home.

By all accounts, this change seems miraculous and how permanent or complete Herbert's recovery will be is unknown yet, but there are some salient points to his story with regard to disability. From the NYT:

In 1999, a year after he was moved to the nursing home, Linda Herbert [his wife] prevailed in a brief legal fight with Mr. Herbert's parents, Geraldine and Donald P. Herbert, over who should have control over decisions in a medical emergency, like pneumonia or a serious infection. All agreed that extraordinary resuscitative measures should not be taken in the event of a stroke or a heart attack.

No one has asked any of the Herberts if they would have signed a DNR ("Do Not Resuscitate" order) had they known the firefighter would wake up in a decade and recognize family and friends (and to be fair, it's not the sort of thing to be routinely expected), but it's quite possible the verdict wouldn't have been unanimous. And so little is really understood about the human brain that experts cannot predict or explain when a "miraculous" recovery of this sort might happen. From Newsday.com:

Dr. Rose Lynn Sherr of New York University Medical Center said when patients recover from brain injuries, they usually do so within two or three years.

"It's almost unheard of after 10 years," she said, "but sometimes things do happen and people suddenly improve and we don't understand why."

And while nondisabled observers might ponder what life "trapped inside" a nonresponsive body or brain might be like, even imagining it to be hellish and a living death, as many said about Terri Schiavo, Herbert's experience of the past decade doesn't seem to be a hell of any kind. He thought he'd been recovering for about three months. And, of course, as people are wont to do, he seems happy to be alive and visit with family and friends. Good thing that DNR didn't get put to use. Good thing he didn't have a feeding tube.

Autism is a World on CNN May 22

The Academy Award nominated documentary Autism is a World makes its television premiere Sunday, May 22, at 8 p.m. (ET) on CNN. Narrated by actress Julianna Margulies but written in her own words, the film tells the story of 26-year-old Sue Rubin of Los Angeles. From the press release:

Rubin has been on an extraordinary journey for 26 years. When she was four, her unusual behavior led to a diagnosis of autism and contributed to the belief that she was mentally retarded. But at age 13, a new communication technique gave Rubin the ability to connect with the world and exhibit her considerable intelligence. Now, she is a junior in college, a tireless disabilities-rights activist and an articulate guide into autism.

Rubin wrote the documentary, and is the viewer’s guide into autism. By typing into a handheld communication device, Rubin explains her feelings and her actions, such as her need to clutch spoons or why she finds comfort in falling water; her relationships with other people; and how she copes with the tasks of daily living and the challenges of college.

Rubin also describes some of her unusual behavior. She does not make eye contact when greeting strangers and instead may fixate on their shirt buttons. She cannot verbalize a person’s name but may frequently repeat the same word or phrase. By discussing some of her behaviors, Rubin provides insight into this complex part of autism.

Rubin guides the audience through all that is special and usual about her life. From the racetrack where she goes to unwind to the classroom where her intellect shines and from a presentation at an autism conference to the challenges of paying bills or shopping, Rubin takes an unflinching look at the world of autism and the challenges she must face daily.

Disability bloggers everywhere

I haven't been able to write here for a while, but lots of traffic here at the moment from Ragged Edge. Do yourself a favor and check out these other bloggers who write about disability that the Edge didn't have a chance to mention:

Disability in the Brazilian Context

Iron Jawed Angel

Nightengale of Samarkand

Nodakwheeler

The 19th Floor

Also -- Yeah, But Houdini Didn't Have These Hips -- an online friend of mine, Sarahlynn, is one of many parents who blog about life with a child who has Down Syndrome. Her perspective often teaches me to think harder about the whole realm of disability experience, and her thoughtful blog includes links to many other parents like herself. Plus, behold adorable pictures!