Disability

The sound of one leg bowling

Things you didn't know about amputees.

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Here is a reason I don’t bowl. I suffer an irrational fear that one of my fingers will become stuck in the hole and the bowling ball will yank it off, and I will stand there watching the ball roll down the lane with my bloodied digit sticking out. Normally, I don’t share my fears of accidental amputation with fellow bowlers, but at this particular bowling session it seems to fit right in with the conversation, for it’s a pizza-and-bowling party hosted by a Bay Area amputee group called Stumps ‘R Us.

“Stump” is not a derogatory term among these amputees. “Residual limb” is the p.c. term, but everyone here today says stump. As in, “Your stump will change size if you gain or lose weight” or “My daughter-in-law’s Dalmatian is fascinated by his stump.” In case you are wondering what they call us, we’re TABs, which stands for totally able-bodied. “Or, less optimistically,” quips one amputee, “temporarily able-bodied.”

Stumps ‘R Us founder Dan Sorkin, who invited me, wants me to meet one of the bowlers, a man named Alan Fisk, who was born with four stumps. I have never been introduced to anyone with arm prosthetics before. Do I shake his hook? Fisk doesn’t extend it, so I don’t reach for it. As it turns out, I wouldn’t have been shaking his hook; I’d have been shaking his bowling attachment, and God only knows what the etiquette is there. (Golf and baseball mitt attachments are also available.)

Fisk steps up to bowl. He jams the plunger at the end of his attachment into one of the bowling ball finger holes. (One of the odd things about being an amputee is that you use words like “plunger” and “coupler” and “piston” to talk about your own anatomy.) By maneuvering his shoulder, Fisk can pull a cable that contracts the plunger and lets the ball go. He hefts the ball up onto his other arm prosthesis, and walks to the line on his leg prostheses and bowls a strike. This man handles himself with more grace and athletic prowess than I do with limbs intact. I am filled with awe and wonder and a fleeting thought that perhaps he doesn’t need to use handicapped-parking spaces and will want to give his decals to me.

Acknowledging the cheers, Fisk raises his hook in the air, just as victorious athletes with flesh fists do. Fisk also applauds with his prostheses, uses them to wipe sweat from his brow and wears a watch on one. It’s possible to buy arm prostheses with molded plastic hands, but Fisk prefers hooks because they’re more functional.

He demonstrates how he can hold things by opening and closing his hook, which is halved like a split end. This too is done by pulling the cable that runs from the hook to the shoulder harness that holds his prostheses in place. “I hate that word,” says Fisk. “Pros-theee-seees.” The inner surfaces of the opened hook are coated with rubber to make it easier to grasp things. I ask Fisk if he can hold a needle. “Yes,” he says patiently. “But I don’t know if I could do anything with it.”

Fisk excuses himself, goes off to score another strike and returns. To feel better about myself, I hold up my cuff. “See this button? I sewed it on.”

Having introduced me to a half-dozen amputees who bowl better than I do, Sorkin wants me to meet an amputee who in-line skates better than I do. James Prial does stunt and marathon skating. Prial claims his artificial leg is an advantage. Skating demands ankle stability, and the most stable ankle joint you can have is no ankle joint at all. Prial is wearing shorts. As discreetly as is possible, I’m trying to figure out how an artificial leg stays on. Eventually I ask.

“Suction and sleeve,” volunteers a former heavy equipment operator named Joe Peterman, who lost his right foot after a construction accident at the Pac Bell Park site. Peterman explains that there’s an air valve at the top of this type of prosthetic, and when you push down on it with your stump, it presses the air out, creating a suction that holds the thing in place. He peels back a neoprene sleeve, which creates a seal to keep the suction from breaking. Then he goes right ahead and takes his prosthetic off.

“Whoa, you’ve got a long one, Joe,” says Prial. This is the stump that has the Dalmatian entranced.

Before I leave, Prial tells me there’s loads of interesting information on the Internet about the history of prosthetics. Back at home, I run a Web search on “prosthetic” and “amputee.” It turns up many sites that are interesting, but not in a historical way.

Apparently there’s a subset of the population that is sexually aroused by amputees, which is not to be confused with the subset of the population that is sexually aroused by people with leg braces, or the subset that is hot for people in plaster casts. There’s even an America Online bulletin board posting requesting “photos, videos or correspondence dealing with gals who have severe bunions on their feet.” They would have loved my grandmother.

Most of these “devotees,” as they’re known, are men, but not all. An article in a 1997 issue of the Journal of Sexuality and Disability describes a leg brace devotee who would drive to shopping malls and loiter near the handicapped-parking spaces in hopes of seeing a disabled man. She eventually married a man with forearm crutches and leg braces, but lost interest in him after his condition worsened and he had to forsake the braces for a wheelchair.

Prial said he’s never been approached by female or gay devotees, but wouldn’t be unnerved by it. “Hard to distinguish between preference and perversion,” he wrote me. “What if they just like amputees the way some men only like blondes?”

And then there are the “wannabes.” Compared with wannabes, devotees are as normal as pizza and bowling. Wannabes — or apotemnophiles — are sexually aroused by imagining themselves as amputees and often become fixated on becoming real amputees. While most contrive some method of self-amputation (train tracks, say), some wannabes manage to persuade medics to do the deed.

Just this month, a surgeon in England got himself in hot water for amputating the healthy leg of a wannabe who claimed he was an amputee living in an able-bodied body. An article on the site Amputation quoted the man’s wife, who had begged the doctor to do the operation: “I wish to God someone could take his leg off and then we can live a normal life.” I believe Prial said it best: whoa.

Former Salon columnist Mary Roach is working on a book about science and cadavers, for W.W. Norton

Man with Down syndrome seeks “Girlfriend”

An atmospheric low-budget indie, and its compelling star, tackle a tough "disability" issue with compassion

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Man with Down syndrome seeks Shannon Woodward and Evan Sneider

Taken as a whole, Justin Lerner’s debut feature “Girlfriend” — a surprise hit at last fall’s Toronto International Film Festival — is a modest, uneven example of regional American independent film. But it has tremendous heart and integrity, and also offers remarkable chemistry in its unlikely central pairing of Shannon Woodward, a young actress who has performed several film and TV roles, and Evan Sneider, a young man with Down syndrome. Sneider’s performance is not a novelty act or an affirmative action gesture; he’s playing a complex and affecting character who is slightly out of step with the society around him but seeks to find his own place within it. (Sneider is being billed as the first actor with Down syndrome to play a starring role in an American feature film, and I can’t disprove that hypothesis.)

Left on his own in his Massachusetts small town after his mother’s sudden death, Sneider’s character (also called Evan) begins to fixate on Candy (Woodward), who was once the prettiest girl in his high school class and is now a struggling single mom with a handsome, bad-news ex named Russ (Jackson Rathbone from the “Twilight” movies). With a combination of compassion and detachment, Lerner’s script captures the dilemma faced by many high-functioning Down syndrome adults (I apologize if that terminology is old-fashioned or imprecise). Evan has a vivid emotional and psychological life and is fully capable of an adult sexual response, but has difficulty reading social cues or understanding when he’s being lied to or manipulated.

Candy is genuinely conflicted about taking money from Evan, for instance, but she’s also facing eviction and cannot rely on Russ, and it’s not entirely clear what Evan means when he tells her, “I always thought we would make a good boyfriend and girlfriend.” Some of Lerner’s melodramatic plot elements involving Russ and Candy’s son feel a bit forced, but the menacing mood, bucolic scenery and slowly unfolding relationship between Candy and Evan are all highly effective. And don’t worry — “Girlfriend” never ventures into the truly dark places it sometimes threatens to, and the way things end with Evan and Candy is gentle, optimistic and just about right.

“Girlfriend” is now playing at the Quad Cinema in New York, with other cities and DVD release to follow.

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Lady Gaga apologizes for “retarded” comment

The singer used the r-word during an interview, but quickly apologized for her word choice. Do you forgive her?

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Lady Gaga apologizes for She's very, very sorry!

Lady Gaga may have made amends with Weird Al, but she still has to answer for her politically incorrect remarks during a recent NME interview. When asked (for probably the umpteenth time) if she ripped off “Born This Way” from Madonna’s “Express Yourself,” the little monster got hot under the collar, claiming the only similarities were the chord progressions. Also this:

“I’m a songwriter. I’ve written loads of music. Why would I try to put out a song and think I’m getting one over on everybody? That’s retarded.”

Whoops. For someone whose message is all about how it’s OK to be different, this was definitely a quotable misstep, especially after NME decided to put her r-word comment in the headline of their piece. Gaga has since issued an apology via CNN:

“I consider it part of my life’s work and music to push the boundaries of love and acceptance,” Gaga told CNN in a statement. “My apologies for not speaking thoughtfully. To anyone that was hurt, please know that it was furiously unintentional.”

She continues, “An honest mistake, requires honesty to make. Whether life’s disabilities, left you outcast bullied or teased, rejoice and love yourself today.”

It’s tough, because I don’t think Lady Gaga actually meant to make a demeaning slur. She was angry and cursing up a storm, and that was one of the words that popped out. But just like using “gay” in a negative context, a lot of times the problem is exactly that people aren’t thinking; they’re just using the first words that come to mind from the cultural lexicon.

I doubt anyone thinks Lady Gaga is hating on the mentally handicapped, but as a public figure — especially one who claims to speak for all the “freaks” and “outsiders” — she needs to be even more judicious about what she says. She should talk to Dan Savage, who faced a similar problem back in 2009, when a reader wrote in asking him to stop using the slang word.

That being said, Gaga’s apology was immediate and sincere. Do you forgive her?

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Drew Grant is a staff writer for Salon. Follow her on Twitter at @videodrew.

“Scream 4″: a blind review

What's your favorite scary movie? That's a tough question for Tommy Edison, a critic who with no sense of sight

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Wes Craven's masterpiece is little more than sound if you can't see the fury.

For the blind, buying a ticket to a horror or action movie must seem like a waste of time. Most of these films have sounds that 90 percent explosions, Hans Zimmer chords, and screaming. To add insult to injury, the little dialogue these movies offer are trite and cliched.

Which is something I never considered before watching the premiere episode of the Blind Film Critic, a new site by radio personality and former mayor of Connecticut (for a day) Tommy Edison. In his review of “Scream 4″ Edison, who has been blind since birth, gleefully eviscerates the slasher film for its many non-visual shortcomings.

“The girls in this movie, all they seem to do is complain and scream, that’s it.”

Somehow, with that one sentence Tommy managed to encapsulate the biggest problem facing this genre since its inception. Can’t wait for the next installment.

 

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Drew Grant is a staff writer for Salon. Follow her on Twitter at @videodrew.

Stepmother indicted on grisly death of disabled girl

Investigations suggest that cancer-stricken 10-year-old was victim of dismemberment after finding some remains

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Stepmother indicted on grisly death of disabled girlFILE -This May 2010 file photo shows Zahra Clare Baker, 10, getting a hearing aid during an event at Charlotte Motor Speedway in Hickory, N.C. Elisa Baker , stepmother of Zahra Clare Baker, was indicted Monday, Feb. 21, 2011 on a second-degree murder charge in Zahra Clare Baker's death. Elisa Baker had previously been charged with obstructing justice in the investigation of Zahra Baker's death. The 10-year-old was reported missing in October, and police later found her remains in different locations in western North Carolina. (AP Photo/The Independent Tribune, James Nix, File)(Credit: AP)

The stepmother of a 10-year-old disabled girl was indicted Monday on a charge she murdered the child, and officials released the latest gruesome detail in the case of little, freckle-faced Zahra Baker: Her head is missing.

Medical examiners said Zahra’s death was caused by “undetermined homicidal violence.” An autopsy was done even though authorities haven’t recovered many bones, most notably the girl’s skull, months after she was reported missing. Several bones showed cutting tool marks consistent with dismemberment.

The revelation came in documents released by the state’s chief medical examiner shortly after officials in western North Carolina held a news conference about the second-degree murder charge. Authorities said Elisa Baker, who has been jailed since the weekend the girl was reported missing, desecrated Zahra’s remains to cover up the slaying.

Prosecutor James Gaither Jr. said at the news conference that there was no credible evidence to suggest anyone else was involved in Zahra’s slaying. Hickory Police Chief Tom Adkins called the murder charge “a milestone of holding someone accountable that members of team Zahra have been working toward since the first words spoken on that 911 call.”

Attorneys for Elisa Baker did not return calls seeking comment Monday.

Investigators would continue to pursue leads until the trial begins, Adkins said.

Zahra, who used a prosthetic leg and hearing aids after being stricken with cancer, disappeared four months ago. Police eventually found the girl’s remains in different locations around western North Carolina, and Elisa Baker told authorities that she had been dismembered, according to warrants.

But until Monday, nobody had been charged in Zahra’s death. Elisa Baker was charged with obstructing justice in the investigation by writing a fake ransom note that was found when the girl was reporting missing in October.

Authorities still have not said how the girl died. The lack of a head may help explain why it took months for a charge in her death.

The indictment cites aggravating factors, saying Elisa Baker had a history of physically, verbally and psychologically abusing Zahra.

A search warrant unsealed last month said Elisa Baker led police to the places where they found Zahra’s remains. She claimed her husband, Adam Baker, dismembered the body. Adam Baker has denied that.

The warrant also said that cell phone records indicate Adam Baker was not in the locations where Zahra’s remains were found on the day Elisa Baker indicated, but that cell phone records showed she was in those places.

The 42-year-old woman led a nomadic life, with dozens of different addresses over a seven-year period. She was also married seven times and was wed to more than one man on several occasions. She met Adam Baker, seven years her junior, on a website where users create three-dimensional characters to represent themselves.

Adam Baker is free on bond, facing numerous charges not related to his daughter. He moved to North Carolina with Zahra from Australia after meeting Elisa online.

Baker reported from Raleigh, N.C.

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Judge orders disaster plan for L.A.’s disabled

Lawsuit stems from the abandonment of the disabled during Hurricanes Katrina and Rita due to lack of planning

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Judge orders disaster plan for L.A.'s disabled

The city of Los Angeles discriminates against disabled people because it lacks specific plans to meet their needs in the event of a natural disaster or other emergency, a federal court ruled Friday, the first such decision in the country.

“Because of the city’s failure to address their unique needs, individuals with disabilities are disproportionately vulnerable to harm in the event of an emergency or disaster,” U.S. District Court Judge Consuelo Marshall said.

Marshall ordered the city to meet with the plaintiffs, Audrey Harthorn, a Los Angeles resident who uses a wheelchair, and Communities Actively Living Independent and Free, a Los Angeles nonprofit independent living center, in the next three weeks to come up with a disaster plan for disabled people.

City attorney’s office spokeswoman Cindy Shin said the office has not had a chance to fully review the decision and had no immediate comment.

The class-action lawsuit was filed in 2009, spurred by events during Hurricanes Katrina and Rita in New Orleans, when many disabled people were abandoned and left stranded during evacuations because of a lack of disability planning.

Advocates for disabled people said they hoped the ruling in Los Angeles would cause other cities to examine disaster preparedness policies.

“This is society’s moral duty to people with disabilities,” said Lilibeth Navarro, executive director of Communities Actively Living Independent and Free.

The lawsuit noted that Los Angeles is particularly vulnerable to disasters, including earthquakes, wildfires and possibly terrorist attacks. The city has some 800,000 disabled residents out of a population of about 4 million, according to the Disability Rights Legal Center in Los Angeles.

A disability disaster plan would include provisions for transportation and evacuation assistance, and wheelchair-accessible emergency shelters equipped with electricity for people on life-saving machines, refrigeration for medicines, and commonly used medications, said Shawna L. Parks, director of the disability rights center.

“These will be life and death issues for thousands of people with disabilities in the event of a major disaster,” she said.

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