Friday, May 31, 2013

‘Bulletproof,’ an indie film featuring disabled actors, continues a proud tradition

from The Boston Globe:

“Bulletproof,” an indie film having its local premiere May 30 at the Coolidge Corner Theatre, may strike some viewers as hard to categorize, if not downright surreal.

Is it a Western? Sort of. A period piece? Yes and no. A comedy-drama-musical? Without question. A film about living with disability? That one’s a head-scratcher.

In fact, the movie’s 45-member cast and crew features 18 actors with physical and cognitive disabilities. Three are in wheelchairs. For several, speaking parts are clearly a challenge, albeit one they gamely meet.

Yet the 35-minute film, produced by the staff of Zeno Mountain Farm, a Vermont-based group of camps for the disabled, is not about its actors’ limitations, according to camp cofounder Will Halby.

“It’s all about making an awesome movie,” not a statement, says Halby.

Zeno has released eight previous films, several featuring cameos by Hollywood celebrities. But the buzz around “Bulletproof” is unusually loud as screenings this year are taking place in Los Angeles, New York, and Washington, D.C., as well as Boston and Vermont. On Sunday, the film will be shown at the 11th annual Sprout Film Festival, held at New York’s Metropolitan Museum of Art, a showcase for films featuring people with disabilities.

Adding to the buzz is the independent documentary that is being shot about the making of “Bulletproof.” The documentary — directed by Michael Barnett, whose film “Superheroes” aired on HBO — is being readied for release this year.

“Bulletproof” opens with a bar owner being threatened by a takeover-minded casino developer. Cutting between the present and the Old West, it tells the colorful story of the bar owner’s ancestor Earl “Bulletproof” Jackson, a traveling magician who rescued the people of fictional Cole Junction from a gang of bad guys long ago.

“Bulletproof” was shot on an old movie set called Pioneertown. The cast featured 18 actors with disabilities.
The film was shot at Pioneertown, a 1940s-era Western movie set that’s now a tourist attraction. Paying homage to its cowboy roots, “Bulletproof” boasts authentic Western costumes, saloon brawls, showdowns at the poker table, and a noisy, if bloodless, gunfight on the town’s main street.

Zeno’s other films, all shot on budgets of $25,000 or less, include a pirate-themed musical and mockumentary about a defunct 1960s rock band, with cameos by Ozzy Osbourne and Johnny Knoxville.
Like its predecessors, “Bulletproof” is wholly original, from its script to its score to its unique mix of able-bodied and disabled actors, none of whom is paid.

Jeremy Vest, 27, (pictured) who plays Bulletproof Jackson, has Williams syndrome, a neurodevelopmental disorder. Two of his costars are Alec Bandler, 20, who has Down syndrome, and Judy Moscariello, 51, who has cerebral palsy.

When one character speaks about having to “face life on life’s terms,” he may be channeling the Gary Cooper classic “High Noon.” But he’s also voicing a sentiment that runs through the filmmaking process itself; all cast members, no matter their level of disability, are expected to do their jobs professionally. They must show up on a time and in costume (the rest of the cast is made up of camp volunteers) and set aside their own needs for the greater goal of making a movie.

Barnett got the idea for his documentary after attending a Zeno film premiere three years ago.

“It blew me away,” the filmmaker said, speaking by phone from California. “There was so much spirit and heart to it. I felt like I’d stumbled into this wonderful community nobody knew much about.”

Unsure of how to tell the camp’s story — “I didn’t want to make a camp commercial,” Barnett said — he decided to focus on the filmmaking process, as adapted to accommodate the camp’s special needs community. As the two crews worked side by side during the shooting of “Bulletproof,” any boundaries between them quickly dissolved, he says.

“Special needs were not the biggest hurdle. The filmmaking process was,” said Barnett. “What Zeno creates is a different landscape from the world as we know it. They level the playing field for disabled people so they can create something of value.”

The Zeno back story is compelling itself.

Will Halby and his brother, Peter, have been working at camps for the disabled since volunteering at Camp Jabberwocky on Martha’s Vineyard in the 1980s. Founded in 1953, Jabberwocky is a residential vacation camp for adults and children with disabilities, primarily cerebral palsy. The Halbys also began a close association with AccesSportAmerica , an innovative sports program serving disabled children and adults.

In the mid-90s, the Halbys began organizing their own specialty camps — music, art, sports — in Mississippi, Florida, California, and elsewhere, each lasting from a week to a month. The film camp, based in Southern California, was established in 2003 as a nonprofit.

Producing an original film every year “was really just to give us something to do together as a group,” Will Halby recalls. “We’re very project-based, and for a reason. If you have a goal, it makes day-to-day challenges like personality issues or lack of sleep almost irrelevant.”

In 2008, the Halbys bought 20 acres in Lincoln, Vt., to use as their East Coast base-camp facility. It now hosts a monthlong performing arts summer camp and a winter sports camp. That same year, they absorbed their other far-flung camp entities into a single organization, Zeno Mountain Farm. All run on donations. Campers do not pay to attend, and staffers volunteer. The Halby brothers and their wives, Vanessa and Ila, serve as directors.

As rather playfully described on Zeno’s website, the community consists of “people with Cerebral Palsy, Down syndrome, law degrees, Autism, a love of art, teaching certificates, Cognitive Delay, carpentry skills, Williams Syndrome, a willingness to dance in public and Spina ­Bifida.”

In 2002, a group of Jabberwocky campers blazed a trail of sorts when they starred in “How’s Your News?,” an on-the-road-in-America TV news documentary with a disability twist to it. The film’s backers included “South Park” cocreators Matt Stone and Trey Parker. “How’s Your News?,” which has since inspired two sequels, one covering the 2012 presidential campaign, aired on HBO and made underground stars of its cast.

One was Ronnie Simonsen, who had cerebral palsy and died in 2010. This summer, his name will be attached to a new theater building at the Vermont facility.

Simonsen harbored a deep affection for such B-list stars as Chad Everett. Thanks to Simonsen, Everett agreed to join a group of celebrities who have played small roles in Zeno films: Ted Danson, David Arquette, Lou Ferrigno, Mario Lopez, Joe Manganiello, and Rob Delaney, among others.

“Whether they show up or not doesn’t really matter anyway,” says Halby. “We work on the fly, guerrilla style. That’s what makes it fun to do. And to watch, we hope.”

The “Bulletproof” cast will attend the Coolidge Corner screening Thursday. Audience donations will help fund next year’s film, which has already been scripted and shot. The film tracks a single $1 bill as it migrates from owner to owner, according to Halby.

Beyond that, he says, it’s hard to categorize.

Campaign against restraint, seclusion in schools launches with new film

from Education Week:

New Hampshire-based filmmaker Dan Habib, whose first documentary, "Including Samuel", chronicled the life of his family, which includes a son with cerebral palsy, is back with another film that talks about restraint and seclusion from the perspective of students.

The premiere of "Restraint and Seclusion: Hear our Stories" marks the kickoff of the Stop Hurting Kids campaign, an effort by a coalition of 26 disability advocacy groups to stop the use of restraint and seclusion as a means to curb disruptive behavior.

In addition to "Including Samuel", Habib also produced a film last year on a student with behavioral difficulties, called "Who Cares About Kelsey?" It was that film where Habib learned about some of the behavior management techniques that can help conflicts from escalating to the point where restraint or seclusion is considered necessary, Habib said in an interview.

Representatives from the federal Substance Abuse and Mental Health Services Administration (SAMHSA), and TASH, an advocacy group for people with people with severe disabilities, approached Habib late last year with request that he make a film on the issue from a youth perspective. The documentary features five current and former students and their families talking about their experiences being restrained at school. "It was devastating to film these people talking about what they endured," Habib said.

Restraint and seclusion practices have been under national scrutiny. My colleague, Nirvi Shah, wrote last year about the first-ever Senate hearing on the topic, which also outlined alternatives to the practice. The Stop Hurting Kids campaign is supporting legislation that would prohibit restraint or seclusion unless it is a last resort to prevent an immediate threat to a student or to others.

The campaign plans to host a 5 p.m. Thursday live stream of the movie and a discussion panel that will include Habib; Michael Yudin, the acting assistant secretary of the office of special education and rehabilitative services; and Larke Huang, who leads the trauma and justice strategic initiative for SAMHSA.

The film will be permanently available for viewing on the Stop Hurting Kids website after its premiere May 30.

National Federation of the Blind, MPAA join forces to back book treaty

from The Washington Post:

The National Federation of the Blind and the Motion Picture Association of America announced May 30 that they are working together to support a treaty that would allow published works that have been converted to formats more accessible to blind and visually impaired users — such as audiobooks — to be distributed around the globe.

“There is a book famine that affects the worldwide blind community,” said Chris Danielsen, the director of public affairs for the National Federation for the Blind, in an interview with The Washington Post.

Copyright restrictions have made it difficult for the blind community to gain access to published works, Danielsen said, because even when someone has put the considerable work it takes into converting a book into a format that a blind person can use they're very limited in the way they can distribute the adapted work.

While 57 countries, including the United States, have already made some exceptions in their copyright laws to make it easier to convert texts into formats for the blind, it’s illegal to distribute these texts across borders.
That, Danielsen said, means that there’s a lot of duplication. Every English-speaking country, for example, has to make its own copies of the same book, even though the texts themselves are nearly identical.

The proposed treaty was crafted as a result of collaboration from blind advocates around the world and the World Intellectual Property Organization and would allow more accessible materials to be sent across national boundaries. The treaty is set to be discussed at a conference in Morocco next month.

The proposal has drawn some criticism from corporations that worry that the exceptions may make it easier for a general audience to violate copyright or steal intellectual property. But the MPAA and NFB said in a statement Thursday that this kind of abuse can be avoided if the treaty is written narrowly enough.

The proposal, the groups said, should “avoid addressing extraneous copyright issues” that aren’t directly related to making published works more accessible to blind people.

The issue is one of great importance to the blind community around the world, said Danielsen. Only about five percent of books are converted into formats that the blind community can use, he said. That dearth of material not only keeps blind people from reading popular books but also from getting access to educational texts and other professional literature.

“This is not just about ‘Harry Potter,’ ” Danielsen said. “It’s a matter of inclusion in education and employment. To have these opportunities available to blind people . . . is critical to success.”

Wednesday, May 29, 2013

Hearing aids: A luxury good for many U.S. senior citizens

from NPR:

More than 30 million Americans experience significant hearing loss, but only a third of them get hearing aids.
There are a lot of reasons why someone who needs a hearing aid won't get one: Some think their hearing loss is not that bad, others are too embarrassed to use them, and many people say they are just not worth the price.

Hearing aids cost an average of $1,500 per ear for a basic model, and unlike most technology, their price has not dropped over time.

What is worse: Most insurance companies for the devices. Even Medicare does not cover hearing aids — and the Affordable Care Act will not change that.

Some businesses see the hearing aid market as an opportunity. Costco has opened hearing aid centers in discount warehouses all over the country. Other companies have started selling their own brands of the devices directly online.

Ross Porter, the founder of online retailer , says hearing aids are only expensive because audiologists and distributors charge steep markups on them.

But Virginia Ramachandran, with the Henry Ford Hospital in Detroit, says it is unwise to buy a hearing aid for the first time online. She says the device might be fine, but you will not know how to use it correctly.
"If someone gave you a laptop computer, and you have never used one before, you would not know how to turn it on, you would not know what programs or how to use them," she says.

Ramachandran says the only way to make hearing aids cheaper is to have more consumers enter the market. That way, she says, some of the research and development costs incurred by the industry leaders could be divided among a larger group. (According to the , "Only 1 out of 5 people who could benefit from a hearing aid actually wears one.")

Besides, Ramachandran says, what really keeps people from purchasing hearing aids isn't the cost — it's the stigma.

She led a in 2011 where she divided patients into three groups. The first group could receive their hearing aids for free through their insurance, the second group was partially covered, and the third group had to pay for them out of pocket. Researchers then noted how long it took a patient to get a hearing aid.

They found little difference between the groups with partial or no coverage — but there was a "significant decrease in both the age and degree of hearing loss" for those whose hearing aids were fully covered by insurance.


Dropping the cost of hearing aids can nudge a senior in the right direction, but there are always going to be people who would rather go without.

Ramachandran says that in European countries where hearing aids are covered by insurance, rates of adoption are not significantly higher than in the U.S. She says cost might be a way to stall.

"People genuinely perceive hearing loss as being associated with older age, so any excuse not to get them is a good one if it is something that you do not really want," she says.

If seniors saw the devices as something as normal as eyeglasses, she says, they would be more likely to get them. This would expand the market and could eventually bring the price down.

The industry is already on it: Companies are in the market for to make the pitch.

Saturday, May 25, 2013

How an entirely new, autistic way of thinking powers Silicon Valley

By Temple Grandin and Richard Panek. Adapted and excerpted from The Autistic Brain: Thinking Across the Spectrum in Wired magazine.


Reading an interview with Steve Jobs, I came across this quote: “The thing I love about Pixar is that it’s exactly like the LaserWriter.” What? The most successful animation studio in recent memory is “exactly like” a piece of technology from 1985?

He explained that when he saw the first page come out of Apple’s LaserWriter — the first laser printer ever — he thought, There’s awesome amounts of technology in this box. He knew what all the technology was, and he knew all the work that went into creating it, and he knew how innovative it was.

But he also knew that the public wasn’t going to care about what was inside the box. Only the product was going to matter — the beautiful fonts that he made sure were part of the Apple aesthetic. This was the lesson he applied to Pixar: You can use all sorts of new computer software to create a new kind of animation, but the public isn’t going to care about anything except what’s on the screen.

He was right, obviously. While he didn’t use the terms picture thinker and pattern thinker, that’s what he was talking about. In that moment in 1985, he realized that you needed pattern thinkers to engineer the miracles inside the box and picture thinkers to make what comes out of the box beautiful.

I haven’t been able to look at an iPod or iPad or iPhone without thinking about that interview. I now understand that when Apple gets something wrong, it’s because they didn’t get the balance between the kinds of thinking right.

The notorious antenna problem on the iPhone 4? Too much art, not enough engineering.

Contrast this philosophy with Google’s; the minds behind Google, I guarantee you, were pattern thinkers. And to this day, Google products favor engineering over art.



After I gave a talk at one high-tech firm in Silicon Valley, I asked some of the folks there how they wrote code. They said they actually visualized the whole programming tree, and then they just typed in the code on each branch in their minds. I recalled my autistic friend Sara R. S. Miller, a computer programmer, telling me that she could look at a coding pattern and spot an irregularity in the pattern. Then I called my friend Jennifer McIlwee Myers, another computer programmer who is autistic. I asked her if she saw programming branches. No, she said, she was not visual in that way; when she started studying computer science, she got a C in graphic design. But she did think in patterns. “Writing code is like crossword puzzles, or sudoku,” she said. (Crossword puzzles involve words, of course, while sudoku involves numbers. But what they have in common is pattern thinking.)

Once I realized that thinking in patterns might be a third category, alongside thinking in pictures and thinking in words, I started seeing examples everywhere. (At this point, this third category is only a hypothesis, though I’ve found scientific support for it. It has transformed my thinking about autistic people’s strengths.)

I’m certainly not the first person to notice that patterns are part of how humans think. Mathematicians, for instance, have studied the patterns in music for thousands of years. They have found that geometry can describe chords, rhythms, scales, octave shifts, and other musical features. In recent studies, researchers have discovered that if they map out the relationships between these features, the resulting diagrams assume M√∂bius strip-like shapes.

The composers, of course, don’t think of their compositions in these terms. They’re not thinking about math. They’re thinking about music. But somehow, they are working their way toward a pattern that is mathematically sound, which is another way of saying that it’s universal. The math doesn’t even have to exist yet.

The same is true in visual arts. Vincent van Gogh’s later paintings had all sorts of swirling, churning patterns in the sky — clouds and stars that he painted as if they were whirlpools of air and light. And, it turns out, that’s what they were! In 2006, physicists compared van Gogh’s patterns of turbulence with the mathematical formula for turbulence in liquids. The paintings date to the 1880s. The mathematical formula dates to the 1930s. Yet van Gogh’s turbulence in the sky provided an almost identical match for turbulence in liquid.
Art sometimes precedes scientific analysis, and the relationship can go the other way too: Scientists can use art to understand math.
 
Even the seemingly random splashes of paint that Jackson Pollock dripped onto his canvases show that he had an intuitive sense of patterns in nature. In the 1990s, an Australian physicist, Richard Taylor, found that the paintings followed the mathematics of fractal geometry — a series of identical patterns at different scales, like nesting Russian dolls. The paintings date from the 1940s and 1950s. Fractal geometry dates from the 1970s. That same physicist discovered that he could even tell the difference between a genuine Pollock and a forgery by examining the work for fractal patterns.

“Art sometimes precedes scientific analysis,” one of the van Gogh researchers said. And the relationship between art and science can go the other way too: Scientists can use art to understand math. The physicist Richard Feynman revolutionized his field in the 1940s when he devised a simple way to diagram quantum effects. Equations that took months to calculate could suddenly be understood, through diagrams, in a matter of hours.

And then there’s chess. There’s always chess. For a century now, chess has been the petri dish of choice for cognitive scientists. What makes a chess master a chess master? Definitely not words. But not pictures, either (which is what you might think). When a chess master looks at the board, she doesn’t see every game she’s ever played and then find the move that matches the move from a game she played three or five or twenty years earlier or from a nineteenth-century chess match that she’s studied closely. The stereotype of a chess grand master is someone who can think many moves ahead. And certainly, many chess players do strategize that way. But the grand masters retrieve from their memories not more possibilities but better possibilities because they are better at recognizing and retaining patterns or what cognitive scientists call chunks.

Michael Shermer, a psychologist, historian of science, and professional skeptic  – he founded Skeptic magazine — called this property of the human mind patternicity. He defined patternicity as “the tendency to find meaningful patterns in both meaningful and meaningless data.”
What all these examples tell me is that in society, the three kinds of minds — visual, verbal, pattern thinkers — naturally complement one another. When I recall collaborations in which I’ve successfully participated, I can see how different kinds of thinkers worked together to create a product that was greater than the sum of its parts.

Three kinds of minds — visual, verbal, pattern — naturally complement one another. Yet society puts them together without anybody thinking about it.
 
Yet society puts them together without anybody thinking about it.

But what if we did think about it? What if we recognized these categories consciously and tried to make the various pairings work to our advantage? What if each of us was able to say, Oh, here’s my strength, and here’s my weakness — what can I do for you, and what can you do for me?

Let’s apply this same principle to the marketplace. If people can consciously recognize the strengths and weaknesses in their ways of thinking, they can then seek out the right kinds of minds for the right reasons. And if they do that, then they’re going to recognize that sometimes the right mind can belong only to an autistic brain.

We have a lot farther to go, of course. Ignorance and misunderstanding are always difficult to overcome when they’ve become part of a society’s belief system. For instance, when the movie The Social Network came out, in 2010, the New York Times op-ed columnist David Brooks wrote this assessment of the onscreen character of Mark Zuckerberg, the founder of Facebook: “It’s not that he’s a bad person. He’s just never been house-trained.”

The “training” of the fictional character, however, would have had to somehow accommodate a brain that can’t process facial and gestural cues that most people easily assimilate and that finds its greatest fulfillment not in the fizzy buzz of forming a personal relationship but in the click-clack logic of writing code.

Tuesday, May 21, 2013

Team of academics redesigns a disability icon for NY City

From The Chronicle of Higher Ed:

Parking lots, public bathrooms, and entry ramps all have that same familiar character. It's the blue-and-white stick figure in a wheelchair, leaning slightly backward in comfortable repose, on signs that mean "handicapped."

The image looks passive, even helpless. For years there have been scattered efforts to replace it with a more active representation of people with physical limitations.

That may finally happen, thanks to several years of pushing by a motley collection of determined activists at Gordon College, a small Christian institution in eastern Massachusetts.

Their breakthrough is that the City of New York, in a move that could spark similar updates worldwide, has now agreed to use a Gordon-inspired logo that shows the stick figure with active arms, leaning forward, a participant rather than a dependent.

"It's such a forward-moving thing," said Victor Calise, commissioner of the New York mayor's Office for People With Disabilities, who plans this summer to begin putting the new logo all over the nation's largest city.

Similar attempts at changing the logo have had limited results, said Brian Glenney (pictured), an assistant professor of philosophy at Gordon, who led the effort. New designs have been adopted by some retailers, a college campus, even some smaller municipalities. But none, clearly, the size of New York. "There's finally reception for the idea," he said.

Other advocates agreed. "Oh, man, wow—that will make a splash," said Wayne Sailor, a co-founder of TASH, an advocacy group for the disabled, who is a professor of special education at the University of Kansas. "I predict it will be a real trendsetter."

Mr. Glenney is known at Gordon for a youthful history of spray-painting graffiti alongside fellow practitioners of underground "public art." His idea for the logo redesign was given shape by Sara Hendren, a graduate student in design studies at Harvard University, whom he met through an artist friend.

Their initial "lab work"—placing stickers of test designs over parking signs on the Gordon campus—was quietly approved by the college's assistant director of physical plant, Mark Stowell, who did his best to ensure legality by checking with a few colleagues and digging through rule books.

Mr. Glenney and Ms. Hendren sat beneath the reconfigured signs and listened to the reactions. They then settled on a final version and distributed stickers among friends, who plastered the image on signs in Boston, 30 miles to the south.

From the start, it was a stealth operation, bringing to life Mr. Glenney's concept of art as a way to challenge preconceptions and create change by "defamiliarizing the familiar."

Already there are hints of what's to come from the Gordon-to-Gotham partnership. New York is rolling out a new line of taxis designed to accommodate people with disabilities, and the winner of the competition to supply the specially configured vehicles, Nissan, has agreed to use a version of the Gordon logo with an outstretched hand—a stick figure hailing a cab.

The success of the new logo did not result from an elaborate, well-financed lobbying campaign. Gordon's director of marketing communications, Cyndi McMahon, simply tried calling various possible partners, including the United Nations. There she found Fred Doulton, a social-affairs officer at the U.N. Secretariat for the Convention on the Rights of Persons With Disabilities, who got Mr. Calise's attention in the mayor's office and has been spreading the word about the new symbol through the U.N.'s "Enable" newsletter.

Mr. Calise himself was paralyzed from the chest down in 1994, at the age of 22, in a bicycling accident. The common stick-figure logo, created by a Swedish graphic-design student in 1968, is "stagnant," he said, "and there's no movement, and it makes people seem like they don't do much with their lives."

Mr. Glenney became interested in disability issues through his work in the philosophy of mind and perception. He has a lab to test out ideas, and while he and Ms. Hendren were experimenting with a device that might help users perceive colors by listening, they came to realize that the standard graphic representation of people with disabilities was "really awkward," he said. "It's bad art."

Ms. Hendren noticed a few places that used more active versions, including New York's Museum of Modern Art, and wondered why they weren't used everywhere.

Members of groups such as TASH have long wanted an update of the standard logo, Mr. Sailor said, but are often busy enough fighting to maintain legal protections and government resources that disabled people need to live their lives without constant hands-on assistance.

"It's easy to kind of look back and say, Why didn't we do this before, it makes so much sense?" he said. Now that Gordon's logo has found a home in New York City, he thinks it may spur a societal reappraisal of what really would be the most helpful solutions.

"You wind up talking about much more than a logo," Mr. Sailor said. "You wind up talking about the broader, bigger issues of who are these people, what do they need, and where are we in the present."

Hollywood's disabled actors protest NBC's 'Ironside' casting - When is it their turn?

From The Wrap:

When the '60s procedural "Ironside" is revived on NBC this fall, the setting will move from San Francisco to New York and the lead character will be African-American (non-disabled actor Blair Underwood who is playing Ironside is pictured). But one thing hasn't changed: The actor playing Ironside can still walk from his wheelchair when the director yells cut.

The colorblind casting is ironic to some disabled actors -- who say having a walking actor play a paraplegic is as offensive as blackface.

"This would be like being in the '50s and having a white guy do blackface, at this point," said "Sons of Anarchy" star Kurt Yaeger, an actor and pro BMX rider who lost his left leg after a motorcycle accident. "You need to start having disabled people playing disabled characters. Period."

NBC declined to comment to TheWrap on the "Ironside" casting, and on whether any disabled actors auditioned for the role, which went to Blair Underwood. But five disabled actors who spoke to TheWrap said film and television should at least give them a chance to play characters whose struggles they truly understand.

Their point comes ahead of a 2013-14 television season in which NBC is putting three disabled characters front and center. "The Family Guide" features sighted actor J.K. Simmons as a blind lawyer, and "The Michael J. Fox Show" addresses the actor's real battle with Parkinson's, a disease of the nervous system that causes tremors and limits motor control.

All are part of a trend toward greater visibility for characters with disabilities. They include the paraplegic chorus geek played by Kevin McHale on Fox's "Glee"; Terry O'Quinn's John Locke on ABC's "Lost," and a man with paralyzing muscular dystrophy played by D.J. Qualls on FX's "Legit." All the actors are able bodied.

They follow the path of Daniel Day-Lewis, who won his first Oscar for playing a quadriplegic man with cerebral palsy in 1990's "My Left Foot," and Raymond Burr, who played the original "Ironside."

Besides Michael J. Fox, some of the only people detailing their own physical struggles onscreen are the women in Sundance's docuseries "Push Girls," which returns for its second season June 3.

Auti Angel, a paralyzed actress and musician on the show, wonders why shows don't want the perspective of an actor who is disabled -- or as she prefers, "differently abled."

"What are they afraid of?" she asked. "There are so many extremely talented individuals who are performing artists with a different ability."

Angel's fellow "Push Girls" star, Angela Rockwood, says she doesn't object to "Ironside" because the drama, like her show, challenges perceptions of how those in wheelchairs should look and act. All of the "Push Girls" are young, glammed-up, and athletic.

The five actors who spoke with TheWrap said they all believe the best actor should win a role -- as long as disabled actors are given an opportunity to compete. And they said there are circumstances in which it makes sense to use an actor who can walk.

Larry Sapp, a paralyzed independent filmmaker who is campaigning against the "Ironside" reboot with the Facebook page "Don't Shoot Ironside," said he believes O'Quinn's casting on "Lost" was a case where it was reasonable to use an actor who can walk.

"That is legitimate," he said. "You had to get an able-bodied actor to play that role because 90 percent of his role was walking around on that island."

But Robert Romani, an actor born with spina bifida who has appeared as a featured background player in shows including "Castle," "It's Always Sunny in Philadelphia" and NBC's "Law & Order: SVU," said almost no role needs to be off-limits.

"Any director worth his salt can use a stand in," Romani said.

Networks often say they need to cast big names. But there lies a Catch-22: There won't be any disabled stars until disabled actors are given prominent roles.

Sapp cited a report that claimed NBC's pickup of "Ironside" was contigent on Underwood playing the lead. While members of Hollywood's tight-knit disabled community interviewed by TheWrap could rattle off names of disabled ctors they felt were capable of taking on the role, none could say if any -- like Mitch Longley ("Las Vegas"), Robert David Hall ("CSI") and Daryl 'Chill' Mitchell ("Brothers") -- had been asked to audition.

Tobias Forrest, an actor and rock singer who became a paraplegic after a diving accident at the Grand Canyon 15 years ago, commends "Glee" for giving him a shot at McHale's role. He was called back several times to read for it.

"Ultimately, my gripe is I need to be able to get into the room, at least," Forrest (left) said. "And if it's something that close to my life, then the opportunity to go into the room to win them over is really what we're looking for."

Yaeger said disabled characters should get to play disabled characters -- and not just disabled characters.

"I want disabled characters being played by disabled people, but i also want characters that were written as able-body to be played by disabled actors," Yaeger added.

Ray Bradford, SAG-AFTRA's former national director for policy and diversity advocacy, and independent feature film casting director Pam Dixon agreed it's much more difficult for disabled performers to find success in Hollywood, but wouldn't blame it on discrimination. Instead, they both emphasized the word "exclusion."

"Every group over the decades has come from a place of exclusion to, little by little, inclusion," Bradford said. "When it comes to performers with disabilities, there has been progress, but there's still a long way to go."

Dixon, who was once the senior vice president of casting at ABC, says part of the problem is that there aren't many places where casting directors and producers can find disabled talent. The Los Angeles' Media Access Office -- a once-rich resource for talent -- has closed and many disabled actors aren't represented by agents or managers.

Dixon hopes to launch a possible solution this summer in the form of ActorsAccess.com -- a database of all disabled actors, which will work in conjunction with industry-leading casting tool Breakdown Services. And it's "inclusive," meaning able-bodied actors can register for the service, too.

"You have to win on your talent, but if you don't have the opportunity, you can't do it," Dixon told TheWrap.

Hollywood's disabled actors also realize that a good portion of their opportunities depend on writers. And since writers write what they know, the first step is helping them get to know more about people with disabilities.

"The second step is to allow us to come in," Rockwood said. "And if we're not good enough, then by all means, go out and hire an able-bodied actor to play the role."

Thursday, May 16, 2013

In Britain, Radio 4 discovers the untold history of disability in 10-part series

From the BBC:

In a new ten-part radio series, journalist Peter White (pictured) uncovers new historical sources revealing what life was like for those with physical disabilities in the 18th and 19th centuries. 

Disability: A New History, starting on BBC Radio 4 on 27 May, is the first major series to explore the history of disability before the 20th century. It draws on a wealth of new research by historians across the country from sources including letters, diaries, advertisements, even jokes – all of which reveal what daily life was like for those with disabilities. This was an age before political correctness, and although some of the language used is robust, attitudes were often surprisingly compassionate.

The series sets out to challenge modern-day attitudes to disability, and the archive sources provide direct access to voices from the past. Throughout the series a rich variety of voices is heard: a man who complains he is the ‘only dwarf in Liverpool’; deaf children writing home from institutions; a wounded soldier, struggling to walk with a wooden leg; a society beauty disfigured by smallpox; ‘freaks’ who exploited their extraordinary bodies on the streets of London – and made a fortune. Dr David Turner from Swansea University is the academic advisor to the series and an expert in disability history. He provides academic insights throughout, in addition to a number of historians from across the country.

Elizabeth Burke, Producer, says: “The great thing about radio is that we can bring these voices to life, and give listeners a chance to hear first-hand sources – many of which have not yet been published. Some of these accounts are very funny, some are moving and inspiring. This is cutting-edge historical research – it amounts almost to a new historical movement. We wanted to explore what daily life was like for people with physical disabilities, but also to look beyond that, to ideas of beauty and deformity, wider concepts of what it means to be ‘able-bodied’ - which had an impact on real people, then as now."

For presenter Peter White there is a strong and genuine sense of personal discovery. As a blind man he has always wondered, where were people like him in the past? “I never realised disabled people had a history. History was what happened to everyone else,” White says.

Gwyneth Williams, Controller BBC Radio 4 and Radio 4 Extra, says: “I am so pleased that Peter White, one of our most distinguished presenters, has decided to take up this unexplored area of history. I am looking forward to a challenging and original series which adds to Radio 4’s proud history coverage.”

Notes for Editors
Disability: A New History runs for 10 consecutive weekdays at 1.45pm over a two-week period from Monday 27 May, with an hour-long omnibus edition on Friday nights at 8pm. It was commissioned by Jane Ellison for BBC Radio 4. The producer is Elizabeth Burke for Loftus.

Academic Advisor: Dr David Turner of Swansea University, who recently published the first book-length study of physical disability in 18th-century England, Disability In Eighteenth-Century England: Imagining Physical Impairment.

Historians featured: David Turner, Stephen King, Joanna Bourke , Judith Hawley, Amanda Vickery, Tim Hitchcock, Julie Anderson, Irina Metzler, Naomi Baker, Chris Mounsey, Vivienne Richmond, Caroline Nielsen, Mike Mantin, Selina Mills.

Actors bringing life to the archived first-hand accounts: Gerard McDermott, Euan Bailey, Emily Bevan, Jonathan Keeble, Madeleine Brolly.

Tuesday, May 14, 2013

New closed-captioning glasses help Deaf people go out to movies

From NPR:


There will be a special attraction for deaf people in theaters nationwide soon. By the end of this month, Regal Cinemas plans to have distributed closed-captioning glasses to more than 6,000 theaters across the country.
Sony Entertainment Access Glasses are sort of like 3-D glasses, but for captioning. The captions are projected onto the glasses and appear to float about 10 feet in front of the user. They also come with audio tracks that describe the action on the screen for blind people, or they can boost the audio levels of the movie for those who are hard of hearing.

This is a big moment for the deaf, many of whom haven't been to the movies in a long time. Captioned screenings are few and far between, and current personal captioning devices that fit inside a cup holder with a screen attached are bulky, display the text out of their line of vision to the screen, and distract the other patrons.

Randy Smith Jr., the chief executive officer for Regal Cinemas, says he has worked for more than a decade to find a solution to this problem. He tells Arun Rath, host of weekends on All Things Considered, that it has been his goal since 1998 "to develop a technology that would allow accessibility to the deaf and blind for every show time, for every feature."

Luckily, he had his own "personal guinea pig" at home, he says, in the form of his deaf son, Ryan, now 23. Smith said that as the tech companies would send him new prototypes, he and Ryan would test it out at the movies together, with Ryan giving him feedback along the way.

"We'd do that until we got to a point that we felt it was comfortable enough," Smith says.
Smith says he couldn't put into words what it felt like to finally be at this point, but after announcing the new device, he received a letter from a parent. Smith said that letter described the feeling perfectly:
"I've attempted to enjoy a movie with my son so many times over the last 26 years, but to no avail. After watching a movie I would try to discuss it with him. The comments he would make would in no way relate to the plot of the movie and at one point he finally confessed that as he watched the screen, he simply made up the story in his head. He didn't really know what was going on. The fact that I can take my son to a movie when he visits at the end of June is literally bringing tears to my eyes. It would seem silly to most people but I would imagine you understand what it feels like."
Smith says he can't express it any better than that.

Tuesday, May 7, 2013

Disabled married couple fights to live together in NY group home

From the Asbury Park Press in N.J.:

PORT JEFFERSON, N.Y. — With the beaming smiles of newlyweds, Paul Forziano and Hava Samuels hold hands, exchange adoring glances and complete each other’s sentences. Their first wedding dance, he recalls, was to the song “Unchained ...” ‘’Melody,” she chimes in.

They spend their days together in the performing arts education center where they met. But every night, they must part ways. Forziano goes to his group home. His wife goes to hers.

The mentally disabled couple is not allowed to share a bedroom by the state-sanctioned nonprofits that run the group homes — a practice the newlyweds and their parents are now challenging in a federal civil rights lawsuit.

“We’re very sad when we leave each other,” Forziano says. “I want to live with my wife, because I love her.”

The couple had been considering marriage for three years before tying the knot last month, and they contend in their lawsuit that they were refused permission from their respective group homes to live together as husband and wife. The couple’s parents, also plaintiffs in the lawsuit, said they have been seeking a solution since 2010.

“It’s not something we wanted to do, it’s something we had to do,” said Bonnie Samuels, the mother of the bride.

The lawsuit contends Forziano’s facility refused because people requiring the services of a group home are by definition incapable of living as married people, and it says Samuels’ home refused because it believes she doesn’t have the mental capacity to consent to sex.

Legal experts are watching the case closely as a test of the Americans With Disabilities Act, which says, in part, that “a public entity shall make reasonable modifications in policies, practices, or procedures … to avoid discrimination on the basis of disability.” The group homes are licensed as nonprofits by the state and receive Medicaid funding on behalf of their clients.

“This is a case that is moving into uncharted territory,” says George Washington University law professor Jonathan Turley. “If a state licenses the couple to be married, they are afforded all of the protections and privileges of marriage. The most fundamental right is to be able to live together as a married couple.”

 The couple’s attorney, Martin Coleman, says he has not come across any similar court cases. “What the group homes are saying is that for this class of people, you shouldn’t be married. … What point of intellectual disability is too low for someone to be married?”

Sara Gelser, an Oregon state legislator and member of the National Council on Disability board of directors, says Americans have increasingly come to recognize the rights of the disabled to choose to live their own lives, and marriage and sex is part of that.

She says the couple’s sex life is nobody’s business.

“No one has a right to tell an adult what they can do,” Gelser says. “Sex is a healthy and full part of the human experience. I know it makes some people uncomfortable to think people with intellectual disabilities are engaging in sexual relations, but I don’t understand that.”

A spokeswoman for the Catholic Health Systems, which runs the Maryhaven Center of Hope, has declined to comment, citing pending litigation. Maryhaven has 2,000 clients, ranging in age from 5 to 80, in facilities across Long Island. The facility in Manorville where Samuels lives is for women only.

David Arntsen, attorney for the Independent Group Home Living program in Manorville, where Forziano lives, says that it doesn’t have facilities for married residents and that there is no specific legal requirement forcing the home to house them. The program’s residences have between three and 12 men and women; the home where Forziano lives is coed, according to his attorney.

The lawsuit cites a letter from the director of program services at Independent Group Home Living, saying its homes “are not staffed or designed to house and supervise married couples or assist married couples with the dynamics of their relationships, sexual or otherwise.”

Also named in the lawsuit is the state Office of Persons With Developmental Disabilities, which the couple claims sided with the agencies in refusing to accommodate their wishes and has not done enough to find a solution. The office has declined to comment on the lawsuit.

 Experts say it is difficult to estimate how many mentally disabled people are married, since states ask no questions about a person’s mental capacity on marriage licenses.

Tiffany Portzer, a spokeswoman for the state developmental disabilities office, says the agency does not keep data on the marital status of its clients. “I can tell you that we know it’s a small minority of everyone in a group home, she says.

The couple’s parents say they have reached out to other state-certified group homes to see if they had space. They were told that although other facilities welcome married couples, nothing was available anytime soon, according to the lawsuit. Their attorney says the couple needs to live near their parents on eastern Long Island, as well as the Maryhaven Day Program, which each has attended for years.

Forziano, 30, is classified in the mild to moderate range of intellectual functioning, with recent IQ scores of 50 and 58. He has limited reading and writing skills and cannot manage money.

Samuels, 36, is in the moderate range of intellectual functioning, with recent IQ scores of 50 and 44. She has a significant expressive language disability, which can make it difficult sometimes for others to understand her.

The Social Security Administration offers disability benefits when a person’s IQ is below 70.

The couple met several years ago while attending the performing arts education program for mentally disabled adults, which teaches the basics of staging and set design, and offers singing and acting lessons.

“She’s very beautiful and she helps me,” Forziano says of his new bride.

Samuels says she fell for her future husband because he was funny; she particularly liked his “knock-knock” jokes.

But her eyes begin to well up with tears when asked about her current living situation. “I’m not happy,” she says. “We live apart.”

Bonnie Samuels says she never envisioned her daughter would ever be married, let alone become embroiled in a court fight over it.

“It does make me very angry,” she says, “that people say they want the best and the most for these individuals, or want them to have the type of life that they would like to have and let them grow as much as they can, and yet they’re being told no.”

Saturday, May 4, 2013

Today's life with Down syndrome is full of possibilities

From Liz Szabo at USA Today:

Tim Norton was devastated when his daughter was diagnosed with Down syndrome shortly after her birth in 2006.

He envisioned her growing up tragically disabled. The years ahead seemed filled with darkness.

A chance encounter on a ski slope, just a few months after his daughter was born, changed Norton's outlook on Down syndrome and the prospects for his daughter's happiness.

While skiing near his home in Massachusetts, a gifted teenage skier with Down syndrome, Melissa Joy Reilly (pictured), glided past him at the crest of a hill.

Norton had noticed Reilly earlier in the day but said nothing.

"Melissa stopped in front of me and said, 'Hello, how are you?' " says Norton, of Westford, Mass. "I said, 'Great. What a great night to be skiing.' "

And, just like that, Norton's life was changed.

"Without her even knowing it, without her even trying — it was quite remarkable — I got just the positive lift that I needed," says Norton, whose daughter, Margaret, is now 7.

"She opened my eyes to what the possibilities could be for my daughter," says Norton, a ski instructor. "It was like, 'Wow, this isn't a big black hole. This is a girl who can walk and talk and ski.' "

Like Norton, many people are surprised to learn of the dramatic improvements in health and quality of life for children and adults with Down syndrome.

Advocates for people with Down syndrome feel a new urgency to spread the word about these advances, as more women undergo prenatal tests for Down syndrome and other genetic conditions.

The lives of the 250,000 Americans with Down syndrome today are radically different than a generation ago, says Brian Skotko, co-director of the Down syndrome program at Massachusetts General Hospital.

People with Down syndrome now live to an average of 60 years, according to the national society. Just a generation ago, they lived to an average of only 25.

Many graduate high school. Some take college classes. Some get married. About one in five has a job, says pediatrician Kathryn Ostermaier, medical director of the Texas Children's Hospital Down Syndrome Clinic.

On May 5, 36-year-old named Karen Gaffney will receive an honorary doctorate from Oregon's University of Portland. University officials believe she may be the first person with Down syndrome to receive such a degree.

And the best may be yet to come, Skotko says. Thanks to early intervention, better therapies and educational opportunities, the generation of children with Down syndrome today may be the most accomplished ever, he says.

In March, a 15-year-old Oregon boy became one of the first people with Down syndrome to climb to a base camp on Mount Everest — a height of 17,600 feet.

Research by Skotko and others finds that life with Down syndrome is far happier — for parents, siblings and children themselves — than most imagine.

One of Skotko's studies showed that among more than 2,000 parents on the mailing lists of Down syndrome organizations, only 4% of parents regretted having a child with the condition.

Nearly 99% of people with Down syndrome say they're happy with their lives, and 96% say they like how they look, Skotko's survey found. Among siblings, 88% say their brother or sister with Down syndrome has made them a better person. There's a chance that these surveys paint an overly sunny picture, Skotko says, because people who belong to Down syndrome groups may be better off than those who lack this connection.

Advances in Down syndrome "need to be a part of prenatal counseling," says Ostermaier, an assistant professor at Baylor College of Medicine. "As physicians, we're supposed to give people accurate information so they can make informed decisions."

Children with Down syndrome do face additional health challenges. They have a greater risk of respiratory problems, certain rare leukemias and are more likely to need surgery to correct bowel and colon problems.
About half of babies with Down syndrome are born with congenital heart defects. In the past, many died at birth. Today, surgeons can repair heart defects.

Children with Down syndrome today also can benefit from a variety of early interventions, she says. These include: physical therapy; occupational therapy; speech and language therapy; and feeding and swallowing therapy, to assist with problems caused by low muscle tone.

Because babies with Down syndrome tend to be "visual learners," they can learn to communicate with sign language months or years before they master speech, Ostermaier says. Boston-area mom Melissa Coe is already teaching her daughter, 14-month-old Lily, to signs words such as "father."

Specialized preschools also can help kids with Down syndrome make the transition to a regular kindergarten class, Ostermaier says.

New therapies may one day help alleviate some of the symptoms of Down syndrome, such as intellectual impairment, Ostermaier says. Preliminary clinical trials are now being done with drugs designed to improve memory and learning.

Reilly, now 26, illustrates what people with Down syndrome can accomplish when allowed to reach their full potential, Skotko says.

She remains an avid skier. In February, Reilly won a silver medal in the slalom competition at the Special Olympics World Winter Games in South Korea.

She often accompanies Skotko as he teaches doctors and medical students about Down syndrome.
Skotko says even doctors often know relatively little about Down syndrome. Surveys show that medical students and residents get little training on the condition.

It's important, Skotko says, for people with Down syndrome to tell their own stories.

Skotko, whose sister has Down syndrome, credits her with teaching him lessons about patience, kindness and perseverance.

While learning to ride a bicycle was easy for him, Skotko says it took his sister three summers.

"She is a life coach for all of us in the family," Skotko says. "She has taught us so many life lessons about how to be patient when the world wants the answer now, how to keep on going when others may quit."

Reilly, who lives with her parents, is more active than most Americans: swimming, bicycling, even kayaking in Alaska.

She volunteers as a teacher's aide once a month. And she volunteers for a state senator one day a week, taking the train into Boston by herself. With her experience handling mailings, making deliveries and answering phones, Reilly is hoping to land a paid, part-time job with the senator this spring.

"I love everything" about her job, Reilly says. "I have a lot of friends at work. They all think of me as part of the office ...

"People with Down syndrome and other developmental disabilities are very can-do people," Reilly says. "They are very able."

Norton, who has gotten to know Reilly and her family well, says she continues to inspire him:
"I hope my daughter grows up to be just like her."