Monday, May 25, 2015

What TedxSydney got wrong with #StellasChallenge

From Jax Jacki Brown for Daily Life in Australia:


May 21 TEDXSydney launched the #StellasChallenge campaign at the Sydney Opera House. Despite being billed as "a major initiative designed to contribute to the social inclusion of people living with disabilities", the campaign has caused outrage in much of the disability community.

Named after the late disability activist Stella Young (pictured), #StellasChallenge encourages members of the public to ask people with disabilities a series of questions or conversation starters like such as "Would you mind if we talked about your disability first, so that I can understand how best to refer to it, and would you mind if we explored how it has impacted your life?"

Well, this isn't necessarily a bad thing, I hear you say. It's good that people want to learn more, right? But as Stella's friend and a wheelchair user myself, I have experienced first hand how reductive (and frankly repetitive) these questions can feel. Stella and I have spoken many times about the fact that it's not our disabilities which have impacted our lives, but the structural and economic exclusion surrounding it.

As Stella summed it up in her widely shared 2014 TedX talk, "Life as a disabled person is actually somewhat difficult. We do overcome some things. But the things that we're overcoming are not the things that you think they are. They are not things to do with our bodies. I use the term disabled people quite deliberately because I subscribe to what's called the social model of disability, which tells us that we are more disabled… by the society that we live in than by our bodies and our diagnoses."

So it's particularly disappointing that TedXSydney appears to have misunderstood this important part of her message.

For one thing, the wording of #Stellaschallenge seems to suggest that all she was advocating for was a change in attitudes. But if you have read Stella's work, or if you had known her as a friend, she made it clear, repeatedly, that she believed we deserved much more than an awareness campaign.

Indeed, the act of "questioning what you think you know about disability" calls not so much for a literal inquiry of facts, but the dismantling of presumptions, stereotypes and misconceptions you may hold about people with disabilities, what our lives are like and even questioning the structures and institutions in society which have taught you to think that way.

More importantly, it means questioning how we can address disability disadvantage and then actually implementing the changes that will improve our lives.

In Australia, almost one in five people have a disability and yet 45 percent of us live on or below the poverty line. A landmark report by Women with Disabilities Victoria into women with disability experience of violence in 2014 found that we are at least twice as likely to experience violence as women without disability, with 90 percent of women with intellectual disability having experienced sexual abuse. These are the issues we desperately need to address for people with disability. Not asking us questions but taking action.

Last week, a petition has been launched to call for these concerns to be addressed in #Stellaschallenge. So far, it has attracted almost 1,000 signatures.

We are angry, and we are deeply saddened that Stella's name is being used to spearhead a campaign that is not being led by or co-designed by people with disabilities. Instead, TedXSydney had chosen to consult with disability service providers and charities that are not run by people with disabilities.

Stella was not a supporter of the onus being placed on people with disabilities to tell strangers about our conditions. She was also not a fan of portraying disability as a tragedy.

As disability activist group Crip Army states, "An awareness campaign will not allow us entry into the job market, or make the built environment accessible, or stop abuse, or discrimination. An awareness campaign will not find us accessible housing, or a way out of poverty, or opportunity to make our own decisions about how we live our own lives."


It's not rude: These portraits of disabled vets are meant to be stared at

From NPR:

It's impolite to stare. But when it comes to severely injured soldiers, maybe we don't look enough; or maybe we'd rather not see wounded veterans at all.

That's the message you get from photographer David Jay's Unknown Soldier series. Jay spent three years taking portraits of veterans returning from the wars in Iraq and Afghanistan, but before that — for nearly 20 years — he was a fashion photographer. His stylish, artful images appeared in magazines like Vogue and Cosmopolitan.

"The fashion stuff is beautiful and sexy — and completely untrue," he says.

Truth became the focus of Jay's work for the first time about 10 years ago, when he started The SCAR Project, a series of portraits of women, naked from the waist up, with mastectomy scars. Around the time he was taking those photos, he was also trying to comprehend the news coming from Iraq and Afghanistan.

"We hear about 'this number of men were killed' and 'this many were injured,'" Jay says, "and we think of them — maybe they got shot — or we don't really picture what these injured men look like."

So Jay visited Walter Reed National Military Medical Center outside Washington, D.C., and one of the first injured soldiers he met there was Capt. Nicholas Vogt. In 2011, an explosive device detonated under Vogt's feet in Afghanistan, nearly killing him. His legs had to be amputated.
"I had never seen anything like it," Jay says. "It appeared that he ended at his waist."

He asked Vogt if he would be willing to be photographed.

"And Nicholas was very kind and said, 'Listen, I understand what you're doing but I don't think I can take part in that, certainly [not] right now,'" Jay recalls.

About a year later, Jay was back at Walter Reed and from across the room he heard someone yell, "Hey, photographer!" This time, Vogt wanted to participate. He'd been working hard at his recovery and seeing results. He was swimming a lot and he had a girlfriend (a nurse at Walter Reed who is now his fiancé). Vogt gave Jay permission to take his picture, but he had some parameters.

"I wanted to make sure there was action, it was movement," Vogt says. "Because I didn't want to portray myself as someone that's just waiting for medical retirement and going to be stationary for the rest of my life."

David Jay delivered. In his portrait of Vogt, he captures that sensation of jumping into a swimming pool and feeling your body descend to the bottom. Vogt's arms are stretched out and his eyes are tightly shut. Beneath his black swim trunks, there is nothing.

Vogt doesn't know how other people will react to the portrait, but he's glad he did it. "I just know I felt fulfilled afterwards," he says. "I felt like it represented me as a person. Yeah, I was happy with the result."

Other portraits in Jay's Unknown Soldier series are more graphic.

Take Army Spc. Jerral Hancock (pictured): On his 21st birthday, a roadside bomb hit the tank Hancock was driving in Iraq. The explosion sent shrapnel into his spine, paralyzing him.

Jay's photographs of Hancock show him with his young son — in one, their eyes are fixed on each other; in another, they're looking at the camera. In both, the veteran is bare-chested, revealing his tattoos and the mangled skin and bone where his left arm was amputated.

Then there's Sgt. Joel Tavera: When a rocket hit his Humvee in Iraq, he received third-degree burns across two-thirds of his body, including almost all of his face.

Jay believes these wounds belong to all of us: "You can imagine how many times each of these men and women have heard a parent tell their child, 'Don't look. Don't stare at him. That's rude.' I take these pictures so that we can look; we can see what we're not supposed to see. And we need to see them because we created them."

Jay believes seeing is one step closer to understanding.

The Library of Congress has acquired images from his Unknown Soldier collection as part of its visual documentation of the wars in Iraq and Afghanistan.

Friday, May 22, 2015

Educating with comedy - Jokes from the Comedians with Disabilities Act

From KALW radio:

It’s Thursday night and Nina G (pictured) is about to get on stage for a comedy set.

“I'm a little too overwhelmed to be anxious,” she tells me before taking the stage.

Normally she performs in clubs and bars, but tonight she’s at SOMArts - a cultural center in San Francisco. The gallery is crowded with people and with art. A sign language interpreter is on stage signing her whole performance. Nina G introduces herself.

“I am America's only female stuttering stand up comedian.” 

And then, she gets right into it.

“People come up to me all the time, because I also have dy-dyslexia, that stuttering and dyslexia those aren't real disabilities and I shouldn't be in the Comedians With Disabilities Act. And I explain to them if you look at the definition of what a disability is, according to the Americans with Disabilities Act, it's a physical or mental impairment that substantially results with having to deal with assholes.”

Comedy As Social Commentary

Tonight is the opening of a gallery show that features artists with disabilities and the Comedians With Disabilities Act are the live entertainment. Their name says it all. And Nina G’s first joke about people not thinking she’s disabled enough brings up a common problem for the members of her comedy troupe.

“Michael - who uses a wheelchair - people tell him that he doesn't really need the chair, they tell Steve he's not really a little person, and Eric that he's not really blind. I can only s-speculate but I think part of it might be is that they may see us as peers and if we're peers then how can we have a disability.”

She sees herself as part of a line of comedians who use comedy as social commentary. Think of Chris Rock’s comedy:

“Have you ever been face to face with a police officer and wondered ‘Is he about to kick my ass’ If you follow these easy tips, you’ll be fine.”

Nina G explains her connection to him.

“I’ve learned so much from him about being Black in America. How do you talk about these really difficult things, but in a funny way?”

It’s a balance between being funny, being edgy, and educating people. 

“How many disabled people does it take to screw in a light bulb?”

The audience responds: “How many?”

“One to screw it in and 5 able bodied people to say ‘You are such an inspiration!’” Nina G says. 

Back at the show, Nina G finishes up and Eric Mee - a comedian who’s blind, begins his set as he takes the stage.

“Alright - hey I found it! That’s my whole set goodnight.”

Wheelchair Comedian

This performance featured most of the comedians in The Comedians With Disabilities Act. The group performs together around Northern California about every two months, the rest of the time, they are solo acts. Michael O’Connell founded the group back in 2010.

“We're kind of like the Avengers in a way. They have their own individual movies, but every few years we get together for the big, world saving stuff.”

O’Connell refers to himself as a wheelchair comedian, as he explains on stage.

“Because frankly I’ve just gotten tired of people snickering when I tell them I’m a ‘stand-up comedian.' Some people out there really like to push wheelchairs. The problem is when complete strangers decide they want to try it out. I want you to think of the handles on the back of a wheelchair as breasts - if you don’t know the person they’re attached to, probably shouldn’t be touching them in the first place.”

He feels his identity and his jokes are wrapped up with one another.

“I will get angry if someone puts me as a comedian - I'm like no, no, no...‘wheelchair comedian.’ That's my thing. I want people to know that. In comedy you can't go up there and not address what is different about you.”

Laughing and Not Laughing

And sometimes the audience reacts to this specific difference by not laughing. O’Connell explains.
“People - you know god bless em - they've been raised to think that laughing at disabled people is not nice. And that kind of screws things for us in the comedy field.”

At this show at SOMArts, people were laughing, but every performance is a bit different. Afterwards Nina G explains that when an audience tries to be politically correct it can be awkward.

“No, you not laughing at us shows that you still have remnants of discrimination and and and bias, because you're not treating us like everybody else. At an open mic once there was a woman who was in the audience and she was covering up her eyes and she wouldn't look at me and so I got the mic and I got right in her face and I did eh-eh-eh and I stuttered and then it broke the ice it was good." 

It worked that time. But does their act work other times? Can one night of comedy change a person’s behavior? Michael O’Connell says that after a show in New York someone came up to group member Steve Danner.

“And admitted, 'I used to be scared of little people!' You would think that's offensive, no not for us. Steve was like, ‘how do you feel now?’ and she's like, ‘great!’ and gave a big hug and everything.”
That’s what O’Connell and the rest of the group hopes to see.

“That's what we do as human beings, that which we don't know is what we fear. And that's what's so beautiful about this show that we do is that a lot of people have never met someone in a wheelchair, or a blind person, or someone who stutters, it's fearful it's unusual. And once we finish our show they feel like they actually do know somebody who's blind or in a wheelchair.”

A few jokes can be a good way to talk about things that maybe aren’t getting enough attention, while having a fun evening at same time.

Learn more about the Comedians With Disabilities Act here.
 

How the Apple Watch is opening up new ways to communicate for disabled people

From Mashable. Pictured is Alex Jones, a Deaf American who works for Ai Media, a captioning company, speaking at the Apple Store in Sydney, Australia.

While the first iteration of the Apple Watch has received mixed reviews, one group is excited about the new level of accessibility it could offer — the disability community.

From using public transport to communicating via touch with another person, smartwatches are creating an even playing field for those with different needs.

David Woodbridge, who is blind and the Senior Adaptive Technology Consultant at Vision Australia, said he was pleasantly surprised how simple the Apple Watch is to use, at an event in advance of Thursday's Global Accessibility Awareness Day at the Apple Store in Sydney on Tuesday. He particularly praised the usability and linearity of its interface.

Woodbridge told Mashable Australia he regularly uses apps like TripView — a Sydney transport timetable platform — on his Apple Watch. The watch speaks to him and lets him know when the next train is coming, without having to remove his iPhone from his pocket.

Alex Jones, who has been deaf from birth and works for Ai Media, a captioning company, has also found the device useful because it works with touch. "Deaf people rely on sensitivity, on feeling," Jones said.

For him, the Apple Watch's haptic technology — or what Apple is calling its "Taptic Engine," to deliver taps to your wrist — has been particularly helpful for navigation.

"I use the haptic technology to tell me when I arrive in the city ... with the deaf community, we can feel the pulses whether to go left or right," he added. "If I’m running, it’s good because I can feel the vibrations — I can feel how fast I’m going, whether to slow down or go quicker."

The Apple Watch's capabilities also have a more personal appeal. "You can hold your fingers down onto the face of the watch, and send a heartbeat to a loved one," Jones said. "That’s quite an intimate experience."
When Jones grew in the U.S., there was no technology for deaf people to communicate with. Over time, deaf tele-typing developed, but the units were big and expensive. With programs like SMS and Skype, the community is edging towards equality, he suggested.

Woodbridge agreed. "When we had the iPhone 3 in 2009, I literally felt like I went to heaven," he said. "Not only could I use an iPhone, it was mainstream technology. I paid the same price as everyone else."

Jones' use of video technology to speak with others via sign language on apps like FaceTime on the iPhone — and hopefully soon on the Apple Watch — have also lowered barriers to communication. "That instant communication gives us equal access ... now I feel like we’re on equal footing," Jones said.

And what additions to the Apple Watch would Woodbridge and Jones like to see in the future?
Holograms, according to Jones. "You could do some signing in mid-air, that would be great," he said. "Maybe in five years I want that hologram."

Woodbridge hopes other developers follow Apple's example in designing for broad accessibility: "I want other developers to take on what Apple does as just a matter of course."

"[The Apple Watch is] basically a mainstream device, it raises the bar," he said. "I hope other manufacturers will follow suit ... If Apple can do it, the rest of you can as well."

Sunday, May 17, 2015

Deaf actress Audree Norton, who paved way for Deaf actors, dies at 88

From The NY Times:

Audree Norton, a deaf actress whose fight to be cast on a television show in the late 1970s effectively ended her career in the medium but greatly helped the careers of deaf actors who followed her, died on April 22 at her home in Fremont, Calif. She was 88.

Her death was announced by her alma mater, Gallaudet University, in Washington. At her death, Ms. Norton was an emeritus professor at Ohlone College in Fremont, where she taught English, psychology and drama.

Ms. Norton was a founding member, in 1967, of the National Theater of the Deaf. The company’s formation was a watershed moment in the employment of deaf actors, who had enjoyed steady work in the silent-film era but had been marginalized with the coming of talkies.

The National Theater of the Deaf was the first company to present regular productions in American Sign Language. Today used by hundreds of thousands of deaf people in the United States and parts of Canada, A.S.L. arose spontaneously among deaf Americans in the early 19th century. But by the 1960s, it had long been stigmatized as a crude pidgin English. At the time, its myriad grammatical complexities — as rich as, though quite different from, those of English — were only dimly understood.

Ms. Norton acted in many of the company’s productions, including two evenings of one-acts that came to Broadway in 1969. The first included an adaptation of “The Tale of Kasane,” a Japanese work, in which she played one of a pair of lovers on whom the action centers; the second included signed renditions of poems by William Blake, Lewis Carroll and Elizabeth Barrett Browning, with Ms. Norton signing Browning’s “How Do I Love Thee?”

In both productions, narrators translated the action into spoken English for the benefit of hearing audience members.

Ms. Norton, often described as the first deaf actor to be cast on a network television show, had guest roles on several staples of the 1960s and ’70s. Among them were “Mannix,” on which she played a deaf woman who reads the lips of a man in the act of plotting a kidnapping; the long-running sitcom “Family Affair”; and “The Streets of San Francisco.”

In the late 1970s, she and her husband, Kenneth Norton, who is also deaf, auditioned for the roles of the mother and father in “Mom and Dad Can’t Hear Me,” an ABC Afterschool Special about a hearing teenager (played by Rosanna Arquette) with deaf parents.

As Ms. Norton recounted in “Hollywood Speaks: Deafness and the Film Entertainment Industry” (1988), by John S. Schuchman, the show’s casting director told her, “Of all the people, you and your husband won the roles,” but added, “But you are out because the director is afraid to use deaf actors and actresses.”

The show was broadcast in 1978, with the parents played by two hearing actors, Priscilla Pointer and Stephen Elliott. The Nortons responded with a public battle, filing a complaint with the Screen Actors Guild and rallying other deaf actors to the cause.

The protest was of no direct help to Ms. Norton, who — possibly as a consequence — did not work in television again. But by raising public awareness of the work of deaf actors, it demonstrably helped pave the way for the generation that followed, including Marlee Matlin, who won an Oscar in 1986 for “Children of a Lesser God.”

In 1989 The Los Angeles Times reported that before the fight over “Mom and Dad Can’t Hear Me,” only 33 percent of deaf characters on TV were played by deaf actors, compared with 78 percent a decade later.
Audree Lauraine Bennett was born on Jan. 13, 1927, in Great Falls, Mont. When she was 2, a bout of spinal meningitis left her deaf. With her mother, she moved to Minnesota, where she attended what is now the Minnesota State Academy for the Deaf in Faribault.

She earned a bachelor’s degree in English from Gallaudet College, as it was then known, in 1952, and married Mr. Norton, a classmate, that year. She received a master’s in rhetoric and public address from California State University, Hayward, in 1976.

Ms. Norton began her acting career at mid-century as an on-camera model, appearing in TV commercials for Kodak and Royal Crown Cola, accompanied by a hearing actor’s voice-over.

Besides her husband, Ms. Norton’s survivors include a daughter, Nikki; a son, Kurt; two grandchildren; and a great-grandchild. Another son, Dane, died in 1990.

She was awarded an honorary doctorate from Gallaudet in 2012.

Saturday, May 16, 2015

"Ethan Saylor Bill," in which disabled self-advocates will train police, signed in Maryland

from WUSA9:

FREDERICK, Md. (WUSA9) -- The state of Maryland took a big step forward for people with intellectual and developmental disabilities on May 12.

Governor Larry Hogan signed a bill that turns up the volume for the voices of people with intellectual and developmental disabilities by mandating that self-advocates become involved in the training of police officers.

For more than two years, Patti Saylor of Frederick, Maryland has been channeling her pain into fueling change. Patti Saylor says it was done in her son Ethan's honor,"This will be the Ethan Saylor alliance for self-advocates as educators and its essence is to recognize that people with intellectual and developmental disabilities should be at the table for anything we discuss."

It was January 2013, when Ethan died in police custody after being removed from a movie theater by three off-duty Frederick County Sherriff's deputies moonlighting as security, for not having a $12 movie ticket.

The Medical Examiner ruled Ethan's death a homicide by asphyxiation. A grand jury found no wrongdoing on the part of those deputies.

Patti Saylor's fight for justice and police training has included a civil lawsuit, petitions and the appointment of the first-ever Commission for the Effective Inclusion of Individuals with Intellectual and Developmental Disabilities. Now the people she's fighting for will be able to help train police and have a voice.

Law enforcement training has already started in the state with all new recruits. Now, Patti Saylor hopes self-advocates from the intellectual and developmental disability community will be involved in that training.

"Self advocates have a voice and we need to listen to them. It's their life," Patti Saylor said.
The bill signed goes into effect July 1st, Maryland is the only state in the country that has such a bill.

Monday, May 11, 2015

New Hampshire bans lower-than-minimum wages for workers with disabilities

From New Hampshire Public Radio. In the picture, Governor Maggie Hassan, just after signing Senate Bill 47 into law, May 7, 2015.

Governor Maggie Hassan has signed into law a measure banning employers, in most cases, from paying workers with disabilities at a rate lower than the minimum wage.

Decades ago sub-minimum wages were considered a way to help individuals with disabilities find work. But advocates say those wages have been used to exploit workers instead.

The governor said it’s fitting New Hampshire should be the first to ban sub-minimum wages, because the state has a long tradition of greater inclusion over time: “This generational progress toward including every single one of us into the heart and soul of our democracy, our communities, our economy, has a great ripple effect, not only for individuals and not only for their families, but for our economy, too.”

The governor says New Hampshire has been getting calls from other states about the law. While no New Hampshire employers had been paying a sub-minimum wage, disabilities rights groups have estimated more than 400,000 workers with disabilities are paid such wages nationwide.

The law includes an exception for some training programs and for family-owned businesses.

Sunday, May 10, 2015

Obituary: Toronto Star reporter Barbara Turnbull, disabled by debilitating injury, carved out superlative journalism career

From The Toronto Star. She also wrote the 2013 book, What I know: Lessons from my 30 years of quadriplegia.

Barbara Turnbull, who died May 10 at age 50, is remembered for her "strength, her bravery, the depth of her independence, her writing talent and her vibrant personality.”

Retired Toronto Star editor Nick van Rijn admits that when he first saw reporter Barb Turnbull in the newsroom, he thought: “What is she doing here?” 

Years earlier, a teenage Turnbull had been shot in the neck during a robbery, severing her spinal cord and rendering her a high-level quadriplegic.

“She wasted no time showing me what she was doing here,” van Rijn recalled Sunday. 

Despite “my accident,” as Turnbull called the 1983 shooting during a robbery in the convenience store where she worked, she graduated with honours from Arizona State University’s journalism school as class valedictorian in 1990. She was subsequently hired by the Star, where she became a champion of disability rights and organ donation over her incredible career at the newspaper. 

Former Star managing editor Mary Deanne Shears hired her in the early ’90s. “Little did I know then of her strength, her bravery, the depth of her independence, her writing talent and her vibrant personality. But the Star newsroom came to know all of that, and many of its journalists became her friend, as did I. She was smart and feisty and kind and determined to make every day and every assignment count. I shall miss her so much.”

Former Ontario Attorney General Roy McMurtry befriended Turnbull shortly after the shooting. 

“I admired Barb so much. She was without a doubt the most courageous person I had ever known,” he said.
Newsroom colleague and close friend Joe Hall said he was shocked by how quickly Turnbull made people see her as she wanted to be seen.

“The miracle of Barb was you lost the chair. A whirring, lumbering, 300-pound contraption — the legacy of a cowardly crime and catastrophic injury. Yet if you knew her, it disappeared. Gone, in the glow of a sublime spirit.”

“Barb was exceptional in the way she conducted her life,” said another former colleague, Leslie Scrivener. “She used positive language, the language of the able-bodied, so that she was not set apart. Because of that we didn't set her apart. She walked to work. She had lunch with you. The relationship was collegial, not dependent.”

Torstar board chair and former publisher John Honderich said Turnbull’s work was exemplary.
“She was a great journalist. She wrote some tremendous stories. This is someone whose name had transcended virtually everything, and so people knew the story of Barbara Turnbull. 

“And yet she was insistent, always determined to be just considered, she was a journalist doing her job, she wanted to do great stories, she wanted to do stories that mattered. She cared about the paper. In those respects she would be like any other reporter. 

“But she wasn’t. She wasn’t every other reporter and that’s what made it so special.”

Monday, May 4, 2015

Many in French deaf community outraged by hearing actors playing main deaf characters in 'La Famille Bélier'

From The Independent in the UK:
 
If any country is in desperate need of a feel-good film this Christmas, it is an angry, struggling France. If any cinema industry is in need of a box-office office triumph after a flat 2013-14, it is the French cinema industry.
The advance buzz for La Famille Bélier, which opened across France tonight, has been extraordinary. "Here is a film that makes you laugh, makes you think and occasionally makes you cry," said the newspaper, Le Parisien.

Even before it opened, based on advance viewings and test screenings in the provinces, the movie was predicted to be the next big French hit, following in the steps of The Artist (2011), Intouchables (2011) and Amélie (2001). On the basis of the trailer alone, the film has been sold to 85 countries. A Hollywood remake is planned.

The film tells the story of a deaf-and-mute farming family with a 17-year-old daughter who can not only hear and speak but sing, beautifully. Paula Bélier's decision to leave home to become a professional singer is a sweet calamity for her parents. Their daughter is their mouth and ears. They want her to succeed but cannot comprehend her talent.

Advance acclaim for the film has, however, fallen on deaf ears in one constituency in France: the five million French people who have hearing difficulties and the 500,000 who cannot hear at all. Some – but not all – activists for the deaf are angry that two well-known actors with perfect hearing were cast to play Paula's parents who are Deaf Sign Language users. They also complain that the deaf characters are the main source of comedy in the film.

Karin Viard (who plays Paula's mother, Gigi Bélier) and François Damiens (her father, Rodolphe Bélier) were given a crash course in sign language. The results to those fluent in signing are said to be absurd, as if James Bond were to say "shaken not stirred" in a deep Russian accent.

"The actors sign like pigs," said Emmanuelle Laborit, a deaf French actress, who is director of the International Visual Theatre. "It is as if they were foreigners who can't speak French properly. Would we allow actors to black up to play a black character?"
 
Several senior figures in the French deaf community have decided to boycott the film. Hélène Champroux, who campaigns for French sub-titles in French cinemas, was disturbed by what she saw at an advance showing. "All the deaf characters are over the top. The hearing characters are more normal. Why is that?" she asked.

Other deaf people disagree, vehemently. They say that the comical body language of the actors accurately conveys the way that people with impaired hearing sometimes have to exaggerate their movements to be understood.

Viguen Shirvanian, a deaf cinema critic, says: "I found François Damiens especially to be astonishingly believable in his gestures. There is nothing shocking in casting non-deaf actors. Did anyone complain when François Cluzet played a paraplegic in Intouchables?"

Karin Viard is a popular comedy actress in France and often plays nervous, in-your-face characters. Her portrait of Paula's mother Gigi – an aggressive, funny, emotional woman with a heart of gold – is a typical Viard performance.

She makes no apology to her deaf critics. "Deaf people don't go in for politeness and diplomacy," she says. "They are like energetic clowns, who use their bodies to express themselves. Just like me."

Both Viard and the Belgian actor François Damiens have won high praise for their performances from hearing critics and filmgoers. So has Louane Emera, the 18-year-old newcomer who plays Paula Bélier.
The film's director, Eric Lartigau, had great difficulty in finding a young French actress who could also sing. A friend advised him to look at tapes of The Voice, the French version of the television talent show also seen on UK screens.

He stumbled on Emera, from a large working-class family in norhern France, who was eliminated in the 2013 semi-final. Lartigau went to see her the following day and told her that she was starring in his next film. She accepted enthusiastically.
 
The other star of La Famille Bélier does not even appear in the film – Michel Sardou, an ageing, middle-of-the-road French crooner who is scarcely known outside the Francophone world. The music teacher who recognises Paula's talent (played by Eric Elmosnino) is an unconditional Sardou fan.

He tells his doubting class: "Michel Sardou is to French song what Mozart was to classical music." All the numbers sung by Paula – in a raw but beautiful voice – are Sardou classics. The most moving – "Je Vole" (I am flying) – is about a young person leaving home and moving on, just like Paula Bélier.

Whatever British cinemagoers make of the film next year, they will reach for their hankies in their thousands when Emera as Paula is asked by her deaf, bearded dad to find some way to convey to him her love of singing.

She sings "Je Vole" into his mouth while he hugs her so that he can feel something of the rhythm of her voice through the contact between their bodies.

French filmgoers are perverse. Films that are flagged as blockbusters often flop; some of the great successes of recent years, such as Amélie, received little advance hype.

La Famille Bélier, like many French comic films, lacks subtlety and polish. All the same, as Shakespeare says – "You've seen how it can rain while the sun shines?" – laughter and tears are an irresistible double act.

Saturday, May 2, 2015

MDA Telethon, subject of disability rights protests for decades, finally ends

From The AP. Pictured is a sign from the anti-Jerry Lewis Telethon protest.

NEW YORK — The Muscular Dystrophy Association telethon is ending its annual Labor Day telethon, a television tradition for decades that has slowly disappeared from view since the sudden end of Jerry Lewis' role as host following the 2010 show.

The telethon was a relic from a different age, a tuxedoed Lewis oozing show biz schmaltz and hosting stars from Frank Sinatra to Jennifer Lopez over 45 years, pushing through his exhaustion to sing "You'll Never Walk Alone" as a tote board rang up millions of dollars in donations.

From 21 and a half hours in Lewis' final year, the show had been reduced two hours the last two years on ABC.

"It's not a 21-hour world anymore," said Steve Ford, MDA executive vice president, on Friday.

With television time costly, the MDA's fundraising efforts will move primarily online, he said. The success of a viral event like "The Ice Bucket Challenge" proves this is a potent area for philanthropy, he said.

"The real heroes have always been our families, and what we need to do is make sure that every dollar we raise is spent working for our families," he said.

The Labor Day tote board hit a record of $65 million in 2008, a figure Ford said reflected a full year's worth of fundraising activities capped off by the telethon. The MDA says the telethon itself has been responsible for more than $2 billion in giving.

Lewis' abrupt exit, announced by the MDA a month before the 2011 telethon, was never fully explained. There was no immediate comment on Friday's announcement from the 89-year-old comedian's spokeswoman.

His history with the charity goes back nearly to its beginning: the MDA was started in 1950 and, a year later, Lewis and his comic partner Dean Martin mentioned the charity on their NBC show. The two comics hosted a 1956 telethon before breaking up. Lewis began hosting it regularly in 1966, starting on a single television station in New York.

The telethon was not without controversy; in the early 1990s it was picketed by a handful of disabled people who said people with the disease were being made objects of pity by Lewis in order to raise money.

Yet his roster through the years represented a who's who of entertainment, including a post-Beatles John Lennon, Michael Jackson singing with and without his brothers, Liberace, Johnny Cash, Ray Charles and Celine Dion. Former Johnny Carson sidekick Ed McMahon filled the same role with Lewis on Labor Day for many years.

In 1976, Sinatra engineered a reunion of Lewis with Martin, his estranged former partner.
With years of telethon tapes, the MDA has the equivalent of years of show biz gold in its vaults. Ford said the MDA has been discussing with Lewis ways to release some of this archived material.

Monday, April 27, 2015

Quality is crucial for disability arts: Poor work fails artists and audiences

From The Guardian in the UK:

An initiative for disabled artists, Unlimited, has announced bold shows including Liz Carr’s Assisted Suicide: The Musical (pictured) and Kaite O’Reilly’s Cosy. The aim is to stop venues programming ‘the first work they came across with a wheelchair and a guide dog in it.’

“Works of art which lack artistic quality have no force, no matter how progressive they are politically,” declared Mao Zedong, and although I don’t often find myself in accord with the late Chinese Communist leader, I reckon he was right in this instance. Great art often has a social function, but not every piece of work made with a social or political agenda turns out to be great art.
Purpose and artistic quality was an issue raised at Mind the Gap’s recent event in Bradford on learning disability performance, where a range of international speakers and participants considered issues around ownership, as well as quality and positioning in work made by disabled artists.

Jez Colborne, a resident artist with Mind the Gap, spoke eloquently about owning his own work from initial idea through to its delivery, and Dennis Nilsson, an actor with Moomsteatern, a learning disability company from Sweden, said that when he is on stage he is not disabled, but an actor. David Amelot from French learning disability company Compagnie de l’Oiseau-Mouche, said that performing allowed him to show that he was a “real actor not a monster”.

Moomsteatern apparently banned all political and social aims when it was founded, arguing that they make and stage the work that they do for the benefit of the audience, not the actors. It just so happens that when the audience rate and love a show, it often means that there are significant knock-on benefits for the performers too. Moomsteatern’s artistic director Per Tornqvist spoke of the performers’ right to be on stage and tell a story “that isn’t their own”. He views the Moomsteatern ensemble simply as “actors like any other actors. Like all actors, they have their own toolbox and you have to find what screw fits the screwdriver.”

It was a fascinating day and a considerable advance on my experience last year at a Creative Minds event in Bristol when discussion of quality when applied to learning disabled theatre slipped entirely off the agenda. Here it was central. Matt Hargrave of the University of Northumbria quoted DV8’s Lloyd Newson who has said that disabled art “has to be good or it demeans the art form” and argued that quality work “combats social prejudice because the person on stage is not seen as a burden but as an artist”. Jo Verrent of Unlimited, the world’s largest commissioning programme for disabled artists which has just announced a new clutch of brilliant-sounding, ambitious commissions, argued passionately that quality is crucial but alone it is not enough and that the disability arts sector has to develop a range of work with depth and breadth. The nine Unlimited commissions certainly demonstrate that and include Noemi Lakmaier’s Cherophobia, a 48-hour living installation in which an attempt will be used to lift the artist’s body off the ground with 20,000 helium filled party balloons, as well as Liz Carr’s Assisted Suicide: The Musical and Kaite O’Reilly’s Cosy, looking at our relationship to the medical profession.

The £3m, three-year Unlimited initiative aims to give venues a choice of work and stop them from, as Verrent put it, “programming shit, and the first piece of work that they came across with a wheelchair and a guide dog in it”. Getting the right people to programme the right work in the right situation is very much part of that, and Verrent says that things have shifted significantly since 2012 when Unlimited started. The point of Unlimited is not to build the “world’s most expensive ghetto” but work that competes on a level playing field with every other piece of art being produced in the UK.

But as Pádraig Naughton of Arts and Disability Ireland pointed out, it’s not just a question of developing disabled artists but also developing other advocates including disabled programmers, curators and marketeers who can assist in widening audiences and help institutions think differently about how and where they place work and how they support it.

That could of course include encouraging critical coverage which is currently very low for work made by disabled artists and particularly low for learning disabled artists. Of course there are plenty of other ways to validate work other than a review, but reviews do help raise quality as does a culture of critical self-awareness. Reviewers will be less likely to shy away from writing about work if they feel they can be honest about what they’ve seen and can review it not on the basis of the individual achievements of those involved making the work, or its social value, but on its aesthetics and whether the show sits proudly cheek by jowl with other work being reviewed at the same theatre or other venues. To do anything else fails readers, audiences and those making the work. The encouraging thing about the Mind the Gap event was that it recognised this and understood that the over-praising or programming of poor work damages not just disabled artists but all artists.

Tuesday, April 21, 2015

Australian twins with muscular dystrophy start hackerspace to enable other people with disabilities

From ABC news in Australia:

Two brothers with advanced muscular dystrophy in Melbourne are using 3D printing tools to 're-enable' themselves – and they are now starting a public makers' space to share their tricks with other people with disabilities.

The identical twins, Chris and Nick Fryer, were diagnosed with the crippling Duchenne strain of muscular dystrophy at the age of eight, and were told not to expect to live beyond 21.

Now 37 years old, they are the oldest people with Duchenne MD in Australia, and they are continuing to find new ways to extend and enrich their lives, using home-made technological aids.

Despite being reliant on ventilators around the clock, with movement restricted to their mouths and fingertips, the brothers have made their own robots, drones, wheelchair support frames and computer aids.

"We've always been interested in technology, even when we were very young," Nick said.

"When I was little, my dad taught me how to make model aircraft out of balsawood and glue, and my disability took that away from me, but now technology has given that ability back.

"I can design things on the computer and print them out on my 3D printer and it's fantastic."

Media player: "Space" to play, "M" to mute, "left" and "right" to seek.
Small 3D printed finger devices fixed to the twins' desk enable proper computer and mouse control, while delicate fixtures on their wheelchairs aid muscle support.

"I wanted to adjust how I was sitting in my wheelchair so I designed the little piece to go in the side support bolts.

"We measured it up, designed something, 3D printed it and screwed it in and it's great."

Meanwhile, a robot on the floor – 'Bonsai Bot', named after their love of bonsai - is still a work in progress.
"He's like a pet you can turn off," Nick said.

"The black parts you can see are all designed and 3D printed by us, and we decided to put an ultrasonic sensor on it so I've made him look nice and cute."

After visiting a 'makers group' in Hawthorn recently, Chris and Nick decided they wanted to begin their own space for sharing technology and designs.

They began MESH – Melbourne Eastern Suburbs Hackers – an incorporated group for anyone interested in creating their own technology, with a focus on enabling people with disabilities.

"I think a lot (of people with disabilities) don't even know this exists, and they don't know what they can do," Nick said.

"What we want to do is to enable people with disabilities to design and create things for themselves.

"In the past it was virtually impossible for someone like me to actually make something physical, but now with computers, computer-aided design and 3D printers it's become relatively easy."

Nick says the mantra they live by is "it's not people that are broken, it's technology that's broken".

"Eventually technology will eliminate disabilities, you can already see advances in exoskeletons and prosthetics and all sorts of areas where technology is helping disabled people to, in some cases, eliminate a disability entirely."

"That's what I want to promote. With robotics and all the technology being developed, you can re-enable yourself."

The group is currently operating out of a rented space in Ringwood, but the twins are looking for a more suitable permanent home.

Access to technology has been central to the twins' survival for most of their adult life.

When they were 21, the disease had taken hold of most of their major muscles, and their lungs were struggling to support their breathing.

Chris was on the brink of asphyxiation, and ventilator technology was not readily available to people with MD.

It was only because their mother, Jenny, had seen how effectively ventilators were being used for MD sufferers in Holland, that they were able to access the technology.

But it took a crisis to get there.

Chris reached a psychotic state from not having slept properly for three months when he was 21.
His brain was waking him up automatically to prevent asphyxiation in his sleep.

Furious and desperate, Jenny took her sons into the Austin Hospital emergency department and waited eight hours to see a specialist, demanding that her son be given a ventilator.

"Ventilators weren't new technology, they could have been using them on us for a very long time," Nick recalls.

"There are a lot of MD sufferers who died unnecessarily," he said, adding that his best friend, Ben, was one of them.

Their doctor, Michelle Caldecott, helped to tailor the machine – which is much like a sleep apnoea mask – to Chris and Nick's condition.

Ventilators are now commonly used among people with muscular dystrophy in Australia, and the average life expectancy of someone has increased by ten years, now sitting at 30 years old.

Having already exceeded that age, Nick and Chris are determined to increase the average life expectancy further.

"People still think of MD as being a deadly disease that kills you when you're young. I think it's no longer true," Nick said.

"In the future the average age will go up even further than it has."

Friday, April 10, 2015

Why isn't Netflix's new Daredevil series available for blind people?

From io9. NOTE: After fan complaints, Netflix agreed to audio describe "Daredevil."

Joshua Loevy is an attorney in Kansas City, MO, who happens to be blind. For years, people have compared him to blind attorney Matt Murdock, whose alter ego is the superhero Daredevil. So Loevy was excited to check out the new Daredevil series... but he can't. 

Netflix isn't making Daredevil available in audio description, which is a format where a specially added soundtrack features a person describing the action in between pieces of dialogue. An increasing number of television shows allow audio description as an option, and more and more theaters will allow you to listen to audio description of movies using a bluetooth headset, Loevy tells io9. (Here's a list of DVDs with the feature.)

"The idea that a show about a blind protagonist is not being offered in a format that real blind people can fully appreciate it, is a bit maddening," says Loevy.

Loevy says that every broadcast TV network is now required by law to provide 50 hours of content with audio description every quarter. And as for movies, even five or six years ago it was hard to find a theater that had audio description capability — but as theaters go over to digital projection, it's much easier to find.

"It was a big deal when the movie theater near my parents' place had it," Loevy says. "But now, I've found that most areas have at least two or three theaters equipped with the service." As for television, Loevy notes that it's annoying that you need to be able to navigate a visual menu to unlock the services for the blind — but at least there's a decent amount of content.

Loevy hasn't even experienced the Ben Affleck Daredevil movie, but he's curious to check out the new Netflix version. [Edit: An earlier version of this post said "see."]

"It just serves to drive the point home, that even [with] this show that's centered around a guy that's blind," it's not available for the blind, says Loevy. Daredevil is a character "whose superpowers are derived, in a sense, from his blindness," and the show is "more blind-centric than others." Daredevil is available in closed-captioning, but not in audio description.

When CNBC contacted Netflix about this issue, a Netflix spokesperson responded, "We are working hard to provide great entertainment to all our members, including the hearing and visually disabled. We don't have any further updates to share at this time." 

A grassroots organization called the Accessible Netflix Project, made up of 11 blind volunteers, is pressuring the company to change its policies and add audio description.

Monday, April 6, 2015

Microsoft announces pilot program to hire autistic people

From Corporate Vice President, Worldwide Operations, Microsoft.  Pictured is a group from Specialisterne Connecticut.
In honor of World Autism Awareness Day, April 2, I had the privilege to attend and speak at an event held at the United Nations in New York City, where the theme was “Autism, The Employment Advantage.”
This theme resonates with me on two levels.

First, as a parent. I am the proud mom of Shawn, now 19, diagnosed with autism when he was four years old. Secondly, as a proud executive at Microsoft. A company that believes strongly in diversity.

At Microsoft, we believe that diversity enriches our performance, our products and services, the communities where we live and work, and the lives of our employees. We provide an inclusive environment where everyone can do their best work and have been investing in these programs for many years. In fact, this was one of the things that attracted me to Microsoft.

We have been committed to enabling people with disabilities to be successful for a long time. We also work with Supported Employment and vendor partners to hire people for roles in event services, transportation, and food services. In these roles, we see only 1 percent attrition level. Today, people can consider a wide range of opportunities in supported employment with our vendor partners at Microsoft.

This week, we announced another exciting effort, a new pilot program with Specialisterne, focused on hiring people with autism for full-time, Redmond-based Microsoft positions. It’s early days but we’re excited to get going and we know we’ll learn a lot along the way. Why are we so passionate about this space?

It’s simple, Microsoft is stronger when we expand opportunity and we have a diverse workforce that represents our customers. People with autism bring strengths that we need at Microsoft, each individual is different, some have amazing ability to retain information, think at a level of detail and depth or excel in math or code. It’s a talent pool that we want to continue to bring to Microsoft!

This represents only one of the ways we are evolving our approach to increase the diversity of Microsoft’s workforce. We believe there is a lot of untapped potential in the marketplace and we are encouraged by the strong level of readiness from the vendors who cater to this segment.

Our effort goes beyond autism. We are passionate about hiring individuals of all disabilities and we believe with them, we can create, support, and build great products and services. Our customers are diverse and we need to be as well.

At Microsoft, we encourage all employees to realize their full potential. This belief and the inspiration I get from my son is what drives me personally and why I was honored to speak.

The day my son was diagnosed I distinctly remember the final words of two doctors I overheard as my husband and I left the medical center, “I think they understand.”

I also remember how we walked to the car, pulled onto the road, drove 15 miles to our home, and entered the house. All in silence. We did not know what to say.

But we do now. What we learned over the last 15 years was to find our voice. To model what a unique advantage a young man like my son Shawn can offer. To think of where he is now, a college freshman and part-time employee, and where he has the potential to go, makes my husband and I so proud.

I am also proud of how our society and our workplace is moving forward with the commitment to help support people with autism and disabilities in general.

Candidates interested in our pilot program can email resumes to msautism@microsoft.com. Find out more about Microsoft’s commitment to diversity and inclusion.

Tuesday, March 17, 2015

Noah Galloway, Army vet, double amputee, makes debut on 'Dancing with the Stars'

From Alabama.com:

Noah Galloway will be the first to tell you: He doesn't consider himself a celebrity, a household name or a public figure of national renown.

What, then, is Galloway doing on "Dancing with the Stars," competing with partner Sharna Burgess against 11 other teams?

The Alabama native, 33, might not have the name recognition of powerhouse singer Patti LaBelle or the "Three's Company" credits of Suzanne Somers. He's not a paparazzi magnet like Rumer Willis. And "Hunger Games" fans? Well, we already know their votes are going to Primrose Everdeen, a.k.a. Willow Shields.

But in a very real way, Galloway's accomplishments are significant. He's an Army veteran and double amputee who found the strength to overcome severe injuries. In December 2005, Galloway lost part of two left limbs during Operation Iraqi Freedom, after driving a Humvee into a trip wire that ignited a hidden bomb.

The road to recovery certainly wasn't easy. Yet with grit and gumption on his side, Galloway has become a hardcore athlete, a personal trainer, a motivational speaker and a cover guy for Men's Health magazine. He's focused, ripped and ready to roar.

Tonight, as "Dancing with the Stars" launches its 10th anniversary season, most viewers would call Galloway a stealth contender or a fairly unknown quantity. But over the next few weeks, we're betting that Galloway's fame grows by leaps and bounds -- well, make that cha-cha steps and paso doble moves -- as he appears on the ABC reality series.

Until then, here are few more things you might want to know about him.

State of mind: Galloway's Alabama roots run deep. He was born in Birmingham, and is the son of Andy and Bebe Galloway of Ashville. He makes his home in Alabaster, about 25 miles south of Birmingham. 
Family man: Galloway, a divorced dad, is devoted to his three children: sons Colston and Jack, and daughter Rian Elizabeth. Because he wants to stay close to his kids during his run on reality TV, Galloway has scheduled rehearsals at a Birmingham-area dance studio.

Sorry, ladies!: Take a look at his Instagram page and you'll see several shots of Galloway with his girlfriend, Jamie Boyd. She's a former DJ at country station WZZK-FM, a coach at Iron Tribe Fitness and a Specialist in the Army Reserves.

On the run: Galloway challenges himself with runs and races, including Tough Mudder, Spartan events and Crossfit competitions. He also participates in traditional 5K-10K races and marathons.

Fashion statement: Because of his Scottish heritage -- and yes, to make things tougher -- Galloway has been known to wear a kilt when he competes in athletic events. "The kilt that I use becomes really heavy in the obstacle course races because it absorbs all the mud and water," he told AL.com in 2013.
At the podium: Galloway shares his personal story with schoolchildren, veterans groups and other organizations. His favorite talking points: fitness, fatherhood, leadership and overcoming adversity.

Giving back: Galloway's motto is #NoExcusesNoah. His nonprofit organization, the No Excuses Charitable Fund, aims to reduce childhood obesity and empower injured veterans through physical rehab activities. Galloway's fund supports the YMCA of Alabaster, Ala., and Operation Enduring Warrior.

On the newsstands: Galloway turned heads with his cover story in the November 2014 issue of Men's Heath. He was named the "Ultimate Men's Health Guy," besting about 1,300 applicants and two other finalists. Requirements for the win? To be "physically fit, confident, stylish, career-driven and a pillar of his community," according to the magazine.

Making it work: In tandem with the Men's Heath cover, Galloway made a guest appearance on "The Ellen DeGeneres Show" in October 2014. He raised about $14,000 for his charity that day, earning $4,000 by doing 20 pushups in 20 seconds. DeGeneres tossed in another check for $10,000 from corporate sponsor Shutterfly.

Dynamic duo: Galloway is featured in a children's book, "Bo Meets a Hero," by Sharman Martin and Karim Shamsi-Basha. It's the second volume in a series about a three-legged dog who survives an accident, finds a new owner and earns love. In the book, "Bo and Noah team up to teach others about strength, perseverance, and never giving up," Martin says.

Armed for success: Galloway is extremely comfortable with his prosthetic leg, but he'll be wearing a new prosthetic arm for "Dancing with the Stars." It's being designed by Birmingham's BioTech Limb and Brace and geared to his needs on the dance floor.

Dos and don'ts: Galloway's strength and agility are huge assets to #TeamShalloway (recently shortened to #TeamShway), said partner Sharna Burgess. However, he'll be staying away from two specific dances on the show: the jive and quickstep. Repeating the syncopated, bouncing movements on a prosthetic leg would be too painful for Galloway in the long run, Burgess said.