Wednesday, November 27, 2013

Reporter for The Center for Investigative Reporting’s California Watch expresses concern over scarcity of disability coverage as he accepts inaugural Katherine Schneider Journalism Award for Excellence in Reporting on Disability

From the National Center on Disability & Journalism:

Ryan Gabrielson (pictured), a reporter for The Center for Investigative Reporting’s California Watch, expressed concern over the scarcity of disability coverage as he accepted the inaugural Katherine Schneider Journalism Award for Excellence in Reporting on Disability Nov. 25.

The award, administered by the National Center on Disability and Journalism at Arizona State University, recognizes the best disability reporting in all mediums – radio, television, print and online. Gabrielson received a trophy and a $5,000 prize on behalf of his news organization for “Broken Shield,” a series of reports detailing routine failure on the part of police to protect the developmentally disabled at California care institutions.

After accepting the award, Gabrielson spoke about investigative reporting and coverage of the disabled community as part of a Monday evening lecture series at the Walter Cronkite School of Journalism and Mass Communication. He said stories about the disabled are often under-covered in the media because reporters don’t recognize them or don’t know how to go about reporting them.

Stories about the disabled “are like shuttered big box store buildings to reporters,” Gabrielson said. “They’re monoliths – ugly, windowless, featureless. Their doors appear barricaded.”

“Broken Shield” was chosen from among 72 entries submitted by journalists around the world.

Schneider, who was in attendance for the awards ceremony and Gabrielson’s lecture that followed, said the response to the first contest was incredible, and she called Gabrielson’s work “just great journalism.”

Gabrielson said the story came to him as a tip in April 2011 about financial fraud within a small, obscure Californian police force called the Office of Protective Services. What at first appeared to be a “quick-turn investigation” spiraled into an exhaustive probe over two years and uncovered a system that ignored patient abuse and even deaths.

“The developmental police story covered every condition of my beat — cops who don’t arrest criminals, courts that hardly ever see a patient abuse prosecution, and catastrophes,” Gabrielson said.

Since the investigation was published, state lawmakers have begun to address the problems with a series of bills to begin “reforming the situation,” he added.

Gabrielson said working on the series opened his eyes to disability coverage. “Until you’re aware of the disabled and what they go through, you don’t see them,” he said.

“Broken Shield” also was a 2013 finalist for the Pulitzer Prize in Public Service and won a 2012 George Polk Award and a 2012 Investigative Reporters and Editors Award.

Second-place in the Schneider Journalism Award contest and a $1,500 prize went to Gareth Cook for his New York Times Magazine piece “The Autism Advantage.” Two honorable mentions, each with $500 awards, went to Daphnee Denis and Hoda Emam for a video documentary “Playing by Ear,” and Broughton Coburn for a Dartmouth Alumni Magazine article, titled “Second Chapter: A Portrait of Barry Corbet.”

The awards are funded by Schneider, an author and a retired clinical psychologist who has been blind since birth. She also supports the Schneider Family Book Awards, which honors books that embody artistic expression of the disability experience for adolescent audiences.

“She is a kind, tough as nails woman, who gets disability on the most personal gut-level,” said contest judge Tim McGuire, the Frank Russell Chair of Journalism at the Cronkite School and a member of the NCDJ board.

Entries for the 2013-2014 contest will be accepted beginning in May 2014.

Louisville, Ky., man with Down syndrome turning heads as actor in 'Produce' movie role

From The Louisville Courier-Journal:

It was the middle of the afternoon in the produce department at the ValuMarket on Hurstbourne Parkway, and David DeSanctis (pictured) was naming PLU codes.

“Pear, Anjou: 4416,” said DeSanctis, a 21-year-old Ballard High School graduate who was born with Down syndrome. The man standing next to him, Kris Polaha, looked impressed.

“Banana — that’s easy,” DeSanctis said. “Everybody loves bananas. 4032.”

“Cut!” the director yelled. “Next time, you want to say ‘4011,’ ” Polaha said to DeSanctis, giving him the correct banana code.

DeSanctis and Polaha star in an independent film that wrapped filming in Louisville last week. The movie, called “Produce,” tells the story of a washed-up former major league baseball player who meets a produce clerk with Down syndrome. Their friendship pulls the ballplayer’s life out of an alcoholic tailspin.

The movie will now go to Los Angeles for editing, and the filmmakers expect to submit it to film festivals early next year.

Chris Dowling wrote and directed the film. Dowling, who grew up in Texas and lives in Los Angeles, originally planned to shoot the movie in Austin, but he and producer Milan Chakraborty decided on Louisville instead.

Chakraborty explained that he first visited Louisville for the Kentucky Derby this year, and he caught a glimpse of Slugger Field while driving one day. Because Polaha plays an ex-baseball player, the filming location needed a field nearby.

Still, Chakraborty didn’t really consider making the movie here until he read about Jennifer Lawrence’s work on behalf of Down syndrome. He then got in touch with Gill Holland, whose Louisville-based The Group Entertainment produces movies.

But the real clincher came when Mayor Greg Fischer phoned Chakraborty. “He talked about his background as a businessman,” Chakraborty recalled, appealing to the producer’s former profession as an accountant by pointing out the potential savings Louisville could offer over larger cities.

The producer and director both rhapsodized over how much cooperation they’ve received in Louisville, from the police to Slugger Field and ValuMarket.

 “It’s amazing how businesses and people are opening the doors,” Dowling said. “That has been such a big help.”

“It needed to be filmed where the community plays a big part,” Chakraborty said. “It’s about the heartland.”

While Chakraborty, Dowling and some of the crew came in from Los Angeles, about 75 percent of the crew was hired locally, according to Chakraborty. DeSanctis, the only Louisville actor to take a top role, met the filmmakers early on, and Chakraborty encouraged him to audition.

“We just didn’t have any idea it would ever happen,” said Bill DeSanctis, David’s father. “We thought he (Chakraborty) was just being nice.”

But DeSanctis, who had some previous experience onstage at Ballard, landed the part. “I felt powerful after I realized that I got the part,” DeSanctis said, taking a break from memorizing some lines with Polaha before the day’s shoot.

DeSanctis described his character, whose name is Produce, as “timid and shy and not powerful or stern and firm and invincible.” DeSanctis himself is the opposite — talkative, outgoing and quick with a joke.

“David’s such a ham, I knew he could do it,” said his mother, Julie Wallace. “It’s been a dream of David’s for years. ‘I’m going to Hollywood and be a movie star,’ he says.”

Back on the set, the actors and crew ran through the scene with the PLU codes a few more times, while ValuMarket customers went on shopping around them.

Between takes, Dodie Harmon, a nicely dressed older woman in a teal pantsuit and orange silk scarf, took note of the unusual cameras, microphones and lights crowding up the produce section.

“Who’s the actor?” she asked Polaha, who was standing idly with a shopping basket, looking very much like another customer. Polaha pointed to himself. “What’s your name?” Harmon asked. “Kris,” he said, offering his hand.

Polaha came into town a couple of days before the start of the shoot to hang out with DeSanctis and develop a rapport. “David has allowed me to put aside every preconceived notion I ever had about people with Down syndrome,” Polaha said. “He’s taught me a lot.”

DeSanctis returned the compliment. “Even though in the movie I’m the one that’s changing his life, in real life, he’s the one that’s changing my life,” DeSanctis said, before making a joke at the expense of Chakraborty, who was standing nearby.

“Milan ... I think that I’m the one who is really changing his life around,” he said with a perfectly straight face. “I think Milan Chakraborty needs a life adjustment.”

Tuesday, November 26, 2013

Roosevelt's polio wasn't a secret: He used it to his 'advantage'

From NPR:

Americans remember Franklin Delano Roosevelt as the president who led the country through the Great Depression and World War II. He bolstered the nation's spirits with his confidence, strength and optimism, despite being crippled by polio, a disability that's largely invisible in photographs and newsreels of his presidency.

But historian James Tobin says, despite mis-impressions to the contrary, Americans of Roosevelt's day were well-aware of his disability. In fact, Tobin says, Roosevelt's struggle to overcome his affliction was an important part of the personal narrative that fueled his political career.

Tobin tells Fresh Air's Dave Davies, "[Roosevelt] only discovered who he really was through the ordeal of polio. ... It gave him a kind of confidence in his own strength that perhaps no one can have until you're tested."

Roosevelt contracted polio at the age of 39, and Tobin's new book explores his battle with the illness and the ways it molded his character and influenced his rise in the Democratic Party. Tobin has written previous books about the Wright brothers and war correspondent Ernie Pyle. His new book is The Man He Became: How FDR Defied Polio to Win the Presidency.

Interview Highlights

On how good sanitation made kids more susceptible to polio
Before the polio vaccine, pretty much every little kid ingested the polio virus but was protected by maternal antibodies, so even though the virus passed through his or her system, they wouldn't become sick with disease. As sanitation got better, they had fewer immunities, and so if the virus did creep into a community with good sanitation, kids were more likely to get sick and to become seriously ill.

Roosevelt had grown up on an isolated estate in upstate New York. He probably had immune deficiencies to begin with — he was always getting sick with one bug or another. So he was particularly susceptible when, even though he was an adult, he contracted the virus.

On FDR's recovery efforts
Roosevelt went into a long period of physical rehabilitation after recuperating for several months. By December 1921, he was ready to have a physical therapist begin to massage his muscles, begin to work his muscles, begin to try to figure out exactly the extent of the damage. As more and more time passed in the coming weeks and the early months of 1922, he was able to begin to exercise on his own. This was laborious, difficult: He really could not even stand up on his own at all for months and months, and so this was a matter of lying in his bed, performing these minute little exercises, trying to move one muscle and then another muscle. ... It was painstaking, it was difficult. He had to have his legs put into casts at one point to prevent against contractures. ... It was really a grueling process.

On misimpressions of FDR's openness about his condition
When I've talked to people in the past ... I've always asked them, "Did you know about FDR's condition?" And they've always said yes. What they say is, "We realize later that he was more disabled than we knew, but we certainly knew he was disabled, we knew that he couldn't walk." I think that this misimpression comes from a couple of things:

There was a book published in the 1980s called FDR's Splendid Deception in which the writer, Hugh Gregory Gallagher, I think overstated the evidence for FDR covering this up. And then in the debate over the Roosevelt memorial in Washington that took place in the 1990s, that theme got repeated over and over again by various advocates in that argument. And then it got put into a couple of television documentaries, and so it just had a viral effect.

All you have to do is go back to the newspapers of the time, especially from the 1920s when Roosevelt was making his political comeback, and his disability was discussed constantly. He was very frank about it. So there's no question that people knew about it. And you see during his presidency, people who were themselves disabled, people who had polio, their children had polio, writing to FDR in the White House by the hundreds and talking about his disability. The [nonprofit] itself, which came about during Roosevelt's presidency, he was the leader of it, was an effort to fight polio. The polio campaign that was waged every year had Roosevelt as its figurehead.

On how FDR's condition affected his marriage to Eleanor
I think at first the polio brought the two of them closer together. It was only a few years earlier, 1918, that Eleanor Roosevelt had discovered that he had had this affair with her own social secretary, Lucy Mercer, a situation that everyone knows about. So the marriage had been deeply damaged. Her trust for him had been destroyed.

But polio sort of called upon her to give him all the care that she possibly could give him. That was the sort of wife that Eleanor saw herself as: somebody bound by duty to help her husband. And she absolutely did for many months. She cared for him, she sort of organized his care with physical therapists and nurses at the same time that she was looking after five children and a couple of different households. She really did devote herself to his case.

As he began to pursue his recovery in other places where he could go for treatment, she increasingly saw that she couldn't devote the rest of her life to him and didn't care to. She wanted to express her own individuality, and she wanted to pursue a position of politics of her own, and so she increasingly did that. After 1922 into 1923, they began to lead separate lives, supporting each other in what they were doing but acknowledging they were no longer the kind of husband and wife that they had been before his affair.

On how Roosevelt worked around his condition
Roosevelt realized that when you were crippled — and that was the word that he would use — you have a tendency to make people uncomfortable. People don't know what to say, they don't know where to look, they don't know how to treat you, they don't know whether to feel pity for you, when pity is the last thing that you want. ...

He had to persuade people to feel comfortable in his presence. ... [The therapists and he] began to work on his gait, to work on the way he would walk with the canes and crutches and assistance he would use. So his walk, although slow, began to look more and more natural. And he would seat himself, and he would throw up his head, he would begin to talk — he was always talking, actually — to put people at ease. And this whole physical routine that he developed of putting people at ease was enormously effective, and it made people forget that he was disabled.

On FDR using his disability as a political advantage
[In a speech in Rochester, N.Y.,] he was talking about the needs of disabled children in the state of New York and he mentions himself. He says, "I myself have been through this ordeal, and I am a symbol of what can happen when people with disabilities are strongly supported."

And nobody had expected him to say this out loud; nobody had expected him to address this issue in this way, to turn the disability on its head and make it into this advantage. And so it had [an] electrifying effect on the audience. ... I think Roosevelt ... realized this was a strong part of his presence as a candidate, and it was something that actually appealed to people.

On whether his disability made him a better president
Certainly people close to him said it tempered him. Eleanor herself said it made him stronger and more courageous.

That doesn't quite make sense to me. I think people have those innate capacities or they don't. The crisis draws it out of them. It allows them to see who they really are. And that's why I chose the title The Man He Became. I think he was that man before he became sick, but he only discovered who he really was through the ordeal of polio. So it gave him a kind of confidence in his own strength that perhaps no one can have until you're tested.

I also think it inevitably gave him a kind of passion for people who are suffering that he couldn't have had if he had not deeply suffered himself. That capacity was perfectly timed for the country's problems in the Great Depression.

Sunday, November 24, 2013

Adrienne Asch, bioethicist and pioneer in Disability Studies, dies at 67

From The NY Times:

Adrienne Asch, an internationally known bioethicist who opposed the use of prenatal testing and abortion to select children free of disabilities, a stance informed partly by her own experience of blindness, died on Tuesday at her home in Manhattan. She was 67. 

The cause was cancer, said Randi Stein, a longtime friend. 

At her death, Professor Asch was the director of the Center for Ethics and the Edward and Robin Milstein professor of bioethics at Yeshiva University in Manhattan. She also held professorships in epidemiology and population health and in family and social medicine at Yeshiva’s Albert Einstein College of Medicine. 

“She certainly was one of the pioneers in disability studies,” Eva Feder Kittay, a distinguished professor of philosophy at Stony Brook University and a scholarly colleague of Professor Asch’s, said in an interview. “She was a very strong voice, always bringing in the disability perspective, trying to change the view of disability as some tragedy that happens to someone, rather than just another feature and fact about human existence.” 

Professor Asch, who was trained as a philosopher, social worker, social psychologist and clinical psychotherapist, produced scholarship that stood at the nexus of bioethics, disability studies, reproductive rights and feminist theory. 

She maintained that the lives of disabled women should be as much a feminist concern as those of able-bodied ones. Disabled women, she argued, had long been doubly marginalized: first because of their sex, and again because they failed to conform to a collective physical ideal — an ideal to which at least some able-bodied feminists subscribed. 

Professor Asch’s scholarship centered in particular on issues of reproduction and the family. In an age of fast-moving reproductive technologies, she found that those concerns dovetailed increasingly with issues of disability rights. 

She became widely known for opposing prenatal testing as a means of detecting disabilities, and abortion as a means of selecting babies without them. 

Professor Asch supported a woman’s right to abortion. (She was a past board member of the organization now known as Naral Pro-Choice America.) But in her lectures, writings and television and radio appearances, she argued against its use to pre-empt the birth of disabled children. She argued likewise for prenatal testing. 

For her, supporting abortion in general while opposing it in particular circumstances posed little ideological conflict. The crux of the matter, she argued, lay in the difference between a woman who seeks an abortion because she does not want to be pregnant and one who seeks an abortion because she does not want a disabled child. 

In the first case, Professor Kittay explained, “you’re not seeking to abort ‘this particular child.’ ” In the second, she said, “when you’re seeking to abort because of disability, it’s not ‘any potential child,’ it’s this child, with these particular characteristics.” 

Adrienne Valerie Asch was born in New York City on Sept. 17, 1946. A premature baby, she lost her vision to retinopathy in her first weeks. 

When she was a girl, her family moved to New Jersey, then one of the few states that let blind children attend school with their sighted peers. She attended public schools in Ramsey, in Bergen County. 

On graduating from Swarthmore College with a bachelor’s degree in philosophy in 1969, she found employers unwilling to hire her — an experience, her associates said, that made her keenly aware of disability as a civil rights issue. 

After receiving a master’s degree in social work from Columbia in 1973, she spent much of the ’70s and ’80s working for the New York State Division of Human Rights, where she investigated employment discrimination cases, including those involving disability. 

Trained as a psychoanalytic psychotherapist in the 1980s, she maintained a private psychotherapy practice throughout that decade. In 1992, she received a Ph.D. in social psychology from Columbia. 

Before joining the Yeshiva faculty, Professor Asch taught at the Boston University School of Social Work and at Wellesley College, where she was a professor of women’s studies and the Henry R. Luce Professor in biology, ethics and the politics of human reproduction. 

Her publications include two volumes of which she was a co-editor: “Women With Disabilities: Essays in Psychology, Culture, and Politics” (1988, with Michelle Fine) and “Prenatal Testing and Disability Rights” (2000, with Erik Parens). 

A resident of the Upper West Side of Manhattan, Professor Asch is survived by a brother, Carl, and a sister, Susan Campbell. 

In an article in The American Journal of Public Health in 1999, Professor Asch laid out her philosophy in no uncertain terms. 

“If public health espouses goals of social justice and equality for people with disabilities — as it has worked to improve the status of women, gays and lesbians, and members of racial and ethnic minorities — it should reconsider whether it wishes to continue the technology of prenatal diagnosis,” she wrote. 

She added: “My moral opposition to prenatal testing and selective abortion flows from the conviction that life with disability is worthwhile and the belief that a just society must appreciate and nurture the lives of all people, whatever the endowments they receive in the natural lottery.”

Saturday, November 23, 2013

Prosthetic limbs as art: Sophie de Oliveira Barata’s Alternative Limb Project

From CNN:

LONDON -- With her flaming red hair, Marilyn Monroe figure, and lurid green snake casually coiled around the arm, Jo-Jo Cranfield looks like a real-life muse emerging from a Salvador Dali painting.

It's impossible not to stare at the neon python on her left wrist. But take a closer look and you'll discover that the reptile slithers in and out of the flesh like a psychedelic needle and thread.

Cranfield is an amputee. And her fantastical arm -- described as everything from cool to creepy, and erotic -- is the work of a London designer reinventing the way we see prosthetic limbs.

From stereo legs to feather arms, Sophie de Oliveira Barata's Alternative Limb Project crosses into the realm of surrealist art, yet with a very important function.

"It's drawing attention to their disability in a positive way," said de Oliveira Barata (pictured). "Rather than people seeing what's missing, it's about what they've got.
"Having an alternative limb is about claiming control and saying 'I'm an individual and this reflects who I am.'"

De Oliveira Barata's remarkable work was thrust into the international spotlight last year when model and singer Viktoria Modesta wore her Swarovski crystal leg at the London Paralympics closing ceremony.

Artificial limbs are usually designed to be as inconspicuous as possible. Yet here was an amputee proudly stretching her bejeweled leg before a stadium of flashing cameras and millions of TV viewers across the world.

"Generally the whole technology is moving towards trying to recapture a lifelike limb that looks realistic and also acts realistic in motion," said de Oliveira.

"In this instance I'm doing the complete opposite and I think it does capture that whole childlike imagination -- it's like being a superhero with super powers."

For Latvian-born Modesta, who had her left leg amputated below the knee as a teenager due to ongoing health problems, alternative limbs are as much a way of expressing herself as the clothes she wears.

"Being a self-confessed fashionista, things that I'm into tend to change all the time, and like most key pieces in my wardrobe I would only wear it a number of times," she said.

"The first time I wore a limb that was so obviously bionic, it gave me a total sense of uniqueness and feeling mutant human in the best way possible."

Similarly Cranfield, who tends to wear her snake arm on nights out with friends, says it makes her feel powerful and sexy.

"I wanted people to have to look at me twice with amazement," said Cranfield, a motivational speaker and para triathlete, who was born without an arm below the elbow.

"I'd rather people just asked me outright how I lost my arm. This is so out there -- like I'm wanting you to look at me -- that it makes people feel OK to ask questions."

After studying special effects prosthetics for film and TV, de Oliveira Barata worked with a realistic prosthetics company for eight years, continuing to experiment with artistic limbs in her spare time.

In 2009 she contacted Modesta with her unique idea for an alternative limb company, and the pair began collaborating on a groundbreaking stereo leg, replete with speakers and stiletto shoe.

The prototype was a success and de Oliveira Barata's clients now range from ex-military men looking for a sci-fi leg to children wanting a secret compartment to store their pencils.

The bespoke limbs cost between $4,600 and $21,000. Materials vary according to each design, but must be durable, lightweight, and water resistant.

In Britain, the National Health Service currently only funds realistic limbs. But De Oliveira Barata argued that alternative prostheses could be just as beneficial.

"The dominant thinking is that a new limb should be as close a match to the previous limb as possible," she said. "But until technology gets to the point where you can have a realistic looking limb in movement and aesthetics, there will always be this uncanny middle ground.

"Having an alternative limb embraces difference and can help create a sense of ownership and empowerment."

Not just aesthetically pioneering, de Oliveira is now working on a new series of limbs with alternative functions.

Swiss army knife arms with fold-out tools, nightclubbing legs that light up to music, and cooking arms with different attachments for kitchen appliances, are just some of the futuristic designs she's been working on as part of the project with special effects students at Hertfordshire University, in England.

There is something undeniably playful about the project. After all, one of Cranfield's favorite tricks is walking around with her snake arm poking out the top of her bag.

"It provokes some strange reactions," she admitted. "But I've never wanted to just fit in -- I've always wanted to be different."

Thursday, November 21, 2013

New ring device 'reads' sign language out loud

From ABC News:

A new device will let people who communicate through sign language to translate their hand movements into spoken words. 

The Sign Language Ring created by six designers from Asia University won one of the coveted 2013 Red Dot Design Concept Awards, an international competition that received more than 15,500 applications.
The device, which actually incorporates multiple rings and two bracelets, was inspired by Buddhist prayer beads. 

The rings "read" the hand movements of sign language and the bracelets then transmit or "speak" those words out loud. If another person responds verbally, the device can translate the voice to text that appears on the bracelet.

Users can also pre-record certain movements to customize their device and develop conversational shortcuts, or even slang. 

But some people in the deaf community have reservations about the device's ability to fully translate sign language. 

Guillaume Chastel, senior lecturer in the American Sign Language Department at the University of Rochester in New York, said that unlike a live interpreter, the device could make mistakes in translating his sign language. 

Chastel recognizes, however, that a live interpreter is not always available, and that the Sign Language Ring device could help deaf people with such activities as running errands. 

"We do use gestures or write notes ... [but] writing back and forth takes so long," said Chastel about communicating while at a store. "If you're doing something basic and you can throw on these bracelets, that would be a good option." 

Others worry that the device could miss crucial information conveyed in the face or in the movements of the person signing. 

Howard Rosenblum, the CEO of the National Association of the Deaf, said in a statement that association officials worried about the accuracy of the device. 

"American Sign Language encompasses more than what would be measured in the wrist and fingers. ASL relies on wrist movements, handshapes, finger-spelling, body movements and facial expressions," said Rosenblum, who emphasized that he had not seen the device. "The National Association of the Deaf encourages the developers of this emerging technology to work with the deaf and hard-of-hearing community, and the hearing community, to ensure that their innovative product meets our needs." 

According to the National Institute on Deafness and Other Communication Disorders, two to three of every 1,000 children in the United States are born deaf or hard-of-hearing. 

Nine out of 10 children born deaf have parents who can hear.

Vancouver, Canada bans door knobs for better universal design in the city

From The Star in Toronto, Canada:

It could be the death knell of the door knob.
The city of Vancouver has amended its building code to outlaw the use of those wrist-twisting devices in all new construction, including private homes. Door knobs had already been opener non grata in large buildings. The new ruling, effective in March, will not affect existing homes.
Instead of door knobs, new buildings will be equipped with easier-to-manoeuvre levers. The change is a victory for what’s known as universal design, creating spaces and buildings that are easily accessible for everyone.
“This is very progressive of Vancouver,” says Howard Gerry, a professor specializing in universal design at Toronto’s OCAD University. “It makes good sense, even for private houses. Think about an aging population or an individual carrying groceries or small children. Levers make access easier.”

Some critics, however, see the knob ban as overkill. “No pun intended, but it seems heavy-handed,” says Frank Garcea, vice-president of construction for Monarch Homes.

In Ontario, door knobs are a dying breed in public buildings. The Ontario Building Code stipulates that door openers must not require “tight grasping and twisting of the wrist” in all buildings except houses.
The Municipal Affairs and Housing Ministry held public consultations earlier this year about enhancing accessibility. No decisions have been made on how the code might be amended.
But is Vancouver’s move just the beginning of the end? Is the door knob doomed?
“I say, good riddance. It never functioned well,” explains Gerry. “I don’t view it as a good piece of design.”
“Perhaps it is doomed,” adds June Komisar, associate professor of architecture at Ryerson University. Architecture students are now taught early on to design projects for universal access, she says.
The wave of the future is probably electronic entry, says Gerry. “Maybe we’ll have tags under our skin so you get close to the door and it’s geared to open,” he suggests.
Still, the door knob has defenders. “I’m shocked to hear this,” says Sam Mirshak, owner of the architectural antique shop, The Door Store, when told about the Vancouver ban. “I can see it for community buildings and institutions, but not homes.
“I have strong feelings about hardware. Door knobs are lovely. They’re the jewelry of the door.”
Door knobs began replacing latches in the early 1800s in the U.S., particularly after manufacturers made pressed-glass knobs, says Allen Joslyn, president of the Antique Door Knob Collectors of America. Then, in the 1860s, the Victorians, loath to leave anything undecorated, created intricate and embossed knobs.
“I don’t think it’s doomed. Even in Vancouver, they’re not asking people to retrofit,” says Joslyn confidently.
Builder Garcea isn’t worried about the knob’s residential future. “I’ve done lots of upgrades over the years,” he says. “No one has ever asked me to delete all the door knobs.”
But only antique knobs stir nostalgia, points out Gerry. “The contemporary ones are just round pieces of steel.”
Levers now come in a range of designs, including options with an old-fashioned esthetic, he says. Some day people may collect antique levers, admiring the beautiful patina acquired through age and wear, he suggests.

Wednesday, November 20, 2013

Nearly 500 NY City cabs violate the Americans with Disabilities Act, says NY Attorney General

From the NY Daily News:

Nearly 500 of the city’s yellow cabs violate the Americans with Disabilities Act because they’re not wheelchair accessible, the state attorney general has concluded.

By any common-sense measure, Toyota Siennas and Ford Transit Connects are vans and must be able to carry wheelchair users under the federal ADA, Attorney General Eric Schneiderman’s office said in a letter last week .

Schneiderman is asking the U.S. Department of Transportation to adopt his opinion and enact clearer regulations.

The definition of van under the ADA is the subject of ongoing litigation between advocates and the Bloomberg administration. Schneiderman isn’t involved in the lawsuits but his opinion is “quite significant,” Jim Weisman, general counsel at the United Spinal Association, said. “He’s the chief law enforcement officer in the state.”

The United Spinal Association has asked a federal judge to declare Nisssan’s NV200 - the Bloomberg administration’s chosen “Taxi of Tomorrow” - a van that must be wheelchair accessible under the ADA.
Schneiderman’s letter doesn’t discuss the NV200. But the Nissan model has the same characteristics Schneiderman cited in evaluating the Sienna and Transit Connect, including a “boxlike” shape, typically featuring sliding doors on the side panels.

There are more than 13,200 yellow taxis. Only 231 of them are wheelchair accessible, although the city is planning to add 2,000 more in the next several years.

The current yellow cab fleet includes 472 Siennas and Transit Connects that do not have wheelchair ramps.
The Bloomberg administration has a deal with Nissan to be the sole producer of yellow NV200 NYC cabs for a decade. The first nine are in service. The city Taxi and Limousine Commission had no immediate comment.

Disabled characters in fiction follow well-worn formula

From Susan Nussbaum, at The Huffington Post Chicago, who was awarded the 2012 PEN/Bellwether Prize for Socially Engaged Fiction. Her novel Good Kings, Bad Kings became available in paperback November 12, 2013.

On the whole, I do my best to avoid books and movies with disabled characters in them. Of Mice and Men, Forrest Gump, and A Christmas Carol all make me cringe. Heretic? Hater of the disabled? The nerve. But I've thought about this a lot, because I love plays, books, and movies, and also because I'm disabled.

Disabled characters are written into stories for one reason: the disability. Do most people actually believe real disabled people spend our days obsessing about being cured? Or rhapsodizing about killing ourselves? Here is the truth: Disabled people barely ever even think about our disabilities. When we do think about them, it's usually because we are dealing with an oppressive, systemic problem, such as employment discrimination. Can't there ever be a disabled character in a book or film just because? Where the topic doesn't ever come up? All sorts of interesting stories can be written about a disabled character, without the disability ever being mentioned. You know, just like real people.

The vast majority of writers who have used disabled characters in their work are not people with disabilities themselves. Because disabled people have been peripheral for centuries, we've been shut out of the artistic process since the beginning. As a result, the disabled characters we're presented with usually fit one or more of the following stereotypes: Victim, Villain, Inspiration, Monster. And the disabled character's storyline is generally resolved in one of a few ways: Cure, Death, Institutionalization. It's a well-worn formula that can be changed up in a number of ways, but it usually looks something like this:

Disabled Victim + Self-involved non-disabled Protagonist = Cured Victim + Redeemed non-disabled Protagonist
So in A Christmas Carol:
Tiny Tim (victim) + Miser Scrooge (non- disabled protagonist) = Cured Tiny Tim + Redeemed Scrooge
Or in Rain Man:
Raymond (victim) + Charlie (self-involved, non-disabled protagonist) = Institutionalized Raymond + Enlightened, Evolved Charlie

Sometimes, of course, the formula is more complex. For example, in Avatar, the disabled (paraplegic) character becomes "cured" only when he is in his alien avatar body, so the story is resolved when he's permanently merged with his avatar. Avatar also presses home the myth that disabled = non-sexual, by the implication that only in the disabled hero's avatar body can he become fully sexual. The myth of the non-sexuality of disabled people is standard in disability imagery. (Not counting blind characters. Blind characters in films, for example, are generally portrayed by attractive female actors who are victimized by predatory men, or attractive male actors who are often featured in at least one scene where they drive a car.)

Here are a few more examples of the way the disabled character is deployed by novelists, playwrights and screenwriters. This list represents the tip of a very large iceberg. Next to each title, I've listed the stereotype that fits the character, and the eventual fate of the character. I know many of the examples below are considered masterpieces, and surely some of them are, but when it comes to disability, even the best writers don't always know what they're talking about.

The Hunchback of Notre Dame - victim/(but also) monster, suicide (or killed, depending on if you read the book or see the movie)
The Heart is a Lonely Hunter - intellectually disabled victim, dies from institutional neglect, deaf victim, suicide
Moby Dick - (Ahab) villain, killed
Flowers for Algernon - victim, miraculously cured, but then the cure is reversed and the character institutionalized
Peter Pan - (Capt. Hook) villain, swallowed by crocodile
To Kill a Mockingbird - (Tom Robinson) -- victim, killed; (Boo Radley) - victim, allowed to live
One Flew Over the Cuckoo's Nest - victim/martyr, killed
Forrest Gump - inspiration, cured (he miraculously sheds his leg braces in one scene, among other things)

Wait Until Dark - victim (inspiring a rash of films featuring naked, blind, gorgeous actresses being watched in bathtubs)
Scent of a Woman - victim/inspiration, attempted suicide, given will to live by young assistant
Whose Life Is It Anyway - victim, suicide
Million Dollar Baby - victim, suicide (begs to be euthanized)
Frances - victim, institutionalization
Dr. No - villain, killed (drowned in an avalanche of bat shit)
It's a Wonderful Life (Mr. Potter) - villain, foiled by good guys (pictured)
Sling Blade - victim/but also villain, institutionalization
The Green Mile - victim, killed (character also endowed with magical healing powers)
Gattaca - victim, suicide (self-immolation)
I Am Sam - inspiration
Midnight Cowboy - victim, dies

When African American characters were written only by white writers, or LGBT characters were written mostly by heteros, and women were written largely by men, culture in America was, in a way, simply a reflection of the imaginings of a privileged segment of the population. I'm not saying writers should only write about people from their own racial or gender backgrounds. I have often written characters who are outside of my personal experience. But there's an authenticity to characters that are written by someone who embodies the experience of oppression that can help break through old myths. Disabled people have only begun to emerge from the shadows in the past 60 years, but they've already started producing art of all kinds that reflects their lived experience. Maybe it's time for some new stories.

Tuesday, November 19, 2013

Disability studies meeting at NY college wasn't accessible to those with disabilities

From Inside Higher Ed:

At a gathering for scholars interested in the intersection of health, humanities and disabilities this weekend, a professor who uses a wheelchair was asked to ring a bell to gain access to the meeting.

William Peace, a visiting professor at Syracuse University, wrote in a blog post he hadn’t seen a sign directing people to “ring bell for access”— which he likened to “white only” signs — since the Americans with Disabilities Act was passed 23 years ago.

“Before the ADA was passed into law, I rang many such bells for access to buildings. Half the time no one answered the bell. The other times after an extended wait someone would arrive to open the door,” Peace wrote. “In short, I quickly learned 'Ring bell for access' really meant there is no desire or commitment to wheelchair access.”

The blog post has attracted considerable attention among disability scholars, who report that they do regularly confront issues with accessibility, but that they expect better -- or should be able to expect better -- at meetings that involve disability studies.

Peace’s post elicited apologies from the president of Hobart and William Smith Colleges, where the event was held, as well as from the organizers of the humanities, health and disabilities studies working group. The group is co-sponsored by the Central New York Humanities Corridor and the New York Six Liberal Arts Consortium.

When Peace and Stephen Kuusisto, a professor of disability studies at Syracuse University and honors program director, arrived at the working group’s meeting, they first saw an “enter here” sign directly in front of a row of steps. The pair navigated around the building to find a wheelchair accessible ramp, Kuusisto said, but when they entered the building they discovered more steps leading to the meeting room.  They entered the meeting through a back entrance that instructed them to ring a bell for access.

“These kinds of setbacks are so wearing and frustrating and humiliating that it’s hard to absorb,” said Kuusisto. “The organizers of the conference are well-meaning people and yet they were insufficiently mindful of ADA 101.”

A spokeswoman from Hobart and William Smith Colleges released a statement on Monday: “Hobart and William Smith Colleges regret the accessibility challenges faced by Professors Kuusisto and Peace. The conference organizers immediately apologized and the president of Hobart and William Smith also personally expressed his regret. We remain committed to ensuring that our facilities and programs are accessible to all members of the community. We have taken immediate steps to create more appropriate signage and to mitigate access issues.”

Peace said the college has taken appropriate steps by issuing an apology and he looks to see how the working group will make its meetings more inclusive. Conference organizers did not respond to requests for comment. Peace said he will only participate again if more scholars with disabilities are included in the group.

But the incident is just one example of unequal access to higher education facilities, Kuusisto said. He said he’s never seen a lectern on a stage that had a ramp, making the “passive assumption that nobody in a wheelchair would be delivering a lecture.” He also spoke of a university that has its student disabilities office located in a basement with no emergency exit, which would prevent those who used wheelchairs from exiting if the elevators stopped working. Peace said the issue of equal accommodations illustrates a larger issue that higher education is not welcoming to scholars with disabilities.

 “Access is a problem. No thought is really put into cultivating professors with a disability or students with a disability. And what happens is disability becomes a spectacle and it becomes a problem that has to be managed and solved," Peace said. "What took place at Hobart and William Smith Colleges was a microcosm of what could happen at any place.”

The ADA was passed almost 25 years ago, but those with disabilities must continue to call ahead to make sure public and shared spaces will be accommodating, said Tammy Berberi, president of the Society for Disability Studies. She’s frustrated by colleges and universities that pay lip service to equal access by insisting they’d like to offer equal access, but say they do not have the resources to do so.

“The kind of accommodations we can make to benefit people with disabilities would benefit everyone," said Beriberi, an associate professor of French at the University of Minnesota at Morris. “Any one of us should be afforded access to public and shared spaces.”

She pointed to the Bodies of Work festival hosted by the University of Illinois at Chicago as an example of an academic meeting that provides equal access. The festival provides an accessibility manual that outlines accessible travel to the conference, access to services (including exhibitions, tour routes and lectures), access to amenities (such as restrooms and public phones) and empathetic and appropriate terminology. The Society for Disability Studies also provides recommendations for presenters. The recommendations range from providing audio descriptions of all graphics to speaking at a comfortable pace to allow for accurate American Sign Language interpretation and Communication Access Realtime Translation transcription.

Monday, November 18, 2013

Deaf actress from 'Grimm' Stephanie Nogueras: 'There's nothing in my life that would limit my ability to succeed'

From People magazine:

When Stephanie Nogueras was asked to scream at a recent audition, there was just one thing that had her worried – she has never heard what her scream sounds like!

"The audition called for me to scream aloud and act out being aggressively captured," Nogueras, 23, tells PEOPLE of being cast on the supernatural drama Grimm.

"As a deaf person it was a first for me to have to use my voice. I don't know what it sounded like but it landed me the role."

Nogureras's role as a mermaid on Friday's episode of the NBC show is just the latest success the actress has enjoyed in recent years.

"I'm entering my second season playing Natalie on Switched at Birth, but that was my first acting job. Now, with this role on Grimm under my belt, I am eager for more work," says Nogueras who was born "profoundly deaf."

And while Nogueras feels there are not enough acting roles available for deaf people, she is confident that the number of opportunities will continue to increase.

"I feel the success of Switched at Birth has helped to dispel misconceptions about Deaf actors and our capabilities," she tells PEOPLE. "The Deaf community is rich in culture and talent."

For now, Nogueras is glad to see that her presence in the public eye has been inspiring across the board.

"I am honored to be considered a role model and accept the responsibility to inspire both the Deaf and Hearing alike to overcome challenges and fight with limitless faith to achieve their dreams and goals," she says. "There is nothing in my life that would limit my ability to succeed."

AttitudeLive has new web platform to host disability content in New Zealand

AttitudeLive press release; AttitudeLive can be viewed here:

AttitudeLive is an innovative web-based platform that will transform the way people see disability.

Designed to be the home of disability content, it’s a place where you can watch videos about life with a disability, share information and connect to one another.  

It’s a powerful tool for sharing important messages…and for driving social change.

For nine years Auckland based Attitude Pictures have been producing documentaries, giving a voice to the millions of people living in New Zealand and around the world who live with a disability.

Now they’ve created an online space hosting their back catalogue as well as new videos, blogs, supporting information and curated content selected by the AttitudeLive team.

The brief to developers was simple: to create a site that was accessible anytime, anywhere and by anyone.
That meant it had to look good and function well whether on a desktop computer, tablet or smart phone.

With this in mind the technical team scoped the best technology available internationally to deliver the most accessible comprehensive integrated platform devoted to disability.

AttitudeLive has a range of accessibility features that function on all devices including the most accessible video player available, audio descriptions and closed captions.

There’s even the option of viewing the written content in OpenDyslexic –a typeface specially designed for people with dyslexia.The design is clean and each section is colour-coded to help users navigate the site.

It's an endeavour led by people with lived experience of disability and embraces the voice of the broader disability community. The team at AttitudeLive seek to empower people through the telling of strong human stories, and by linking users to the global community.

Saturday, November 16, 2013

British disabled people strip off for stunning calendar designed to celebrate bodies with physical impairments as beautiful forms

From The Daily Mail in the UK:

A group of disabled people have stripped off for a daring new calendar celebrating the beauty of the human form.

The brave participants, who included Paralympic stars, followed in the footsteps of students, sports teams and Women's Institutes for the 'Undressing Disability' calendar.

Proceeds from the calendar will go towards a charity which encourages the disabled to enjoy fulfilling romantic relationships.

The models - who suffer from ailments such as cerebral palsy, blindness and deafness - posed in their underwear in front of London landmarks such as Tower Bridge and the Houses of Parliament.

Among those featured is Nicola Miles-Wildin, who appeared at the Paralympics opening ceremony reciting Shakespeare.

The 34-year-old wheelchair user, who has juvenile chronic arthritis, is an assistant artist with the Graeae Theatre Company, Britain’s only full-time professional theatre company made up of disabled people.

July sees an appearance by England’s first blind fitness instructor, James O’Driscoll. When he went blind almost overnight, he refused let his disability hold him back.

Instead, he determined to break into his chosen industry and was once named 'Man of the Month' by Men's Health magazine.

Mr O'Driscoll's story is so inspirational he ended up becoming a mentor to January's star, 23-year-old Josh Lancaster, who was born with cerebral palsy.

While Mr Lancaster has limited movement on his left side, meeting the trainer through charity ‘Enhance the UK’ inspired him to pursue his life-long passion for the fitness and sport industry.

He now hopes to become a certified personal trainer himself, and is looking to feature in the 2016 Paralympics in Rio de Janeiro.

Also appearing is actress Kiruna Stamell, who played La Petite Princess in Baz Luhrmann’s Moulin Rouge and appeared in EastEnders as Sandra Fielding.

Undressing Disability, a project by Enhance the UK aims to celebrate disabled bodies which are normally ignored by society.

Donations received from the calendar go towards the charity's sex education scheme.