Monday, September 29, 2014

Blind Paralympian will use Google Glass so kids can see his point of view

From Fast Company:

Lex Gillette, a Paralympic three-time silver medalist in track and field (pictured), can jump so far that it seems like he's flying. Because he is blind, Gillette relies on his other senses (and for the long jump, a guide) to help him. Soon, kids in classrooms across the country will be able to experience Lex's point of view while he trains and competes.

Classroom Champions, an organization founded by Olympic bobsled gold-medalist Steve Mesler and Leigh Mesler Parise, connects Olympic and Paralympic athletes with kids in high-needs schools to boost their confidence and help them set big goals. This month, the organization won one of five grants in Google's Giving Through Glass competition, which offered up a pair of Glass, a $25,000 grant, access to Google Glass developers, and a trip to Google HQ to the nonprofits who could best explain how they would use Glass to make an impact.

Classroom Champions' winning pitch: put Glass on athletes like Gillette, so students can see what a Paralympian experiences--and how their abilities, not their disabilities, shine through. "We'll have Lex spend a month or two with the Glass. We have various other athletes, and we'll let them play merry go round with the Glass," says Messler.

Before the competition, Gillette had never heard of Glass. "After I read about Google Glass and how we’re going to approach the situation . . . I’m a blind athlete, and to be able to wear the glasses and have the kids see through my eyes although I can’t even myself, that’s amazing to me," he says. I’m a jumper primarily. There’s a lot of things that go on with that, having someone basically directing me down this runway, and I’m running fast, he’s making calls on the fly. I think it would definitely be cool [for kids to] see how all of that happens, see what that would look like in a visual sense."

Gillette also hopes to take kids on trips through other aspects of his life, from the weight room to the beach. In early August, he'll start doing video introductions with various classrooms. He'll interact directly with a special group of kids, but everything Gillette records will also be available online.

When I spoke to them, Mesler and Gillette were gearing up for a trip to Google's campus. "It's a once in a lifetime opportunity," says Gillette. "It's huge not only for me, but for the students.

The other winners of the competition include The Hearing and Speech Agency, which will use Glass to improve communication for people with speech problems, hearing loss, and autism; and The Mark Morris Dance Group, which will create a Glass app to help Parkinson's patients trigger body movements.

Sunday, September 21, 2014

ADAPT says it wants to sue Little Rock police over arrest of protesters

From Arkansas Online:

A national disability-rights group says it wants to sue the Little Rock Police Department over how officers handled two days of protests this week that resulted in the arrest of a number of demonstrators.

ADAPT, which is asking Arkansas politicians to support a program that would increase funding for disability services for Medicaid enrollees, said in a statement on its website that the arrests constituted a "new low in police behavior."

More than 50 protesters from the group have been arrested in demonstrations Monday and Tuesday in Little Rock, though all were cited and released. Four of them were arrested Tuesday afternoon along Capitol Avenue when they refused orders to get out of the street and onto the sidewalk, police said.

The ADAPT statement from group organizer Mike Oxford seemed to take issue with those arrests in particular, noting that the sidewalks in Little Rock are not ideal for wheelchairs and can cause them to "get stuck or tip over." Many of the ADAPT demonstrators and a number of those who have been arrested are in wheelchairs.

"We have repeatedly tried to explain to the Little Rock Police that the sidewalks jeopardize many people in our group," Oxford wrote. "Many of the officers have quietly agreed with us that they are a safety hazard yet the city and police administration insist that we must stay on the side walk 'no matter what.'

"We know ADAPT can be frustrating, but we don't understand the Little Rock Police’s unprofessional 'pay- back' attitude. It is clear we have angered you and you have decided to get even by threatening our safety, forcing us to use dangerous paths of travel, and violating our civil rights."

The statement says the group is now looking to file a class-action lawsuit for "massive, systemic violations of our civil rights under the Americans with Disabilities Act."

"We regret being forced to do this," Oxford wrote. "So many in the fine City of Little Rock have been so very friendly and helpful, but you leave us no other recourse when you bully us and endanger us."

A Little Rock Police Department spokesman said the department has acted appropriately in its interactions with the group.

"The Little Rock Police Department has and will continue to treat members of ADAPT with dignity and respect," Sgt. Cassandra Davis said in an emailed statement. "We have not been served with any lawsuits concerning our actions over the last two days."

ADAPT has been demonstrating to urge Arkansas lawmakers to adopt the Community First Choice Option, which was established under the 2010 Patient Protection and Affordable Care Act, often referred to as "Obamacare." The option, if adopted, would provide increased federal funding for state Medicaid programs for attendant services programs, which help disabled persons live more independently.

Monday, September 15, 2014

Disability rights advocates sue over DC's emergency plans

From Legal Times:

Washington-area disability-rights advocates this week filed a federal class action against the District of Colombia and its mayor, alleging the city’s emergency plan discriminates against people with disabilities.

The United Spinal Association and The DC Center for Independent Living, along with three Washington residents, seek declaratory and injunctive relief against the District and Mayor Vincent Gray, according to their complaint.

“What I would like is for the judge to realize that the D.C. emergency plan is lacking and that there do need to be changes made to the program so it can serve members of the community,” said Alexandra Bennewith, vice president of government relations for United Spinal. “That’s the whole point. There is not a plan right now.”

The lawsuit, which mirrors similar suits against New York City in 2013 and Los Angeles in 2011, alleges Washington’s emergency response plan violates the Americans With Disabilities Act (ADA), Section 504 of the Rehabilitation Act of 1973 and the D.C. Human Rights Act, Bennewith said.

According to the complaint, Washington’s District Response Plan, drafted by the Homeland Security and Emergency Management Agency, “has failed to adequately plan to meet the needs of its approximately 72,000 residents with disabilities.”

A 2010 agency report states it worked with Washington’s Office on Disability Services to “ensure awareness about the city’s emergency response plan.” An agency checklist urges disabled people to stockpile money and medication and keep friends on speed dial in case of a disaster.

“That is not an emergency plan any way you look at it,” Bennewith said. “We do have many events where we bring our members into D.C. God knows what would happen if there was some type of emergency that wouldn’t be able to handle all of those folks.”

The agency and D.C.’s Office of the Attorney General declined to comment.

U.S. District Judge Jesse Furman in New York ruled in November 2013 that New York City’s emergency plan violated the ADA, Rehabilitation Act and the New York City Human Rights Law. Disability-rights groups filed the class action following Hurricane Sandy (pictured).

According to court documents, Furman ruled the city failed to make disaster centers accessible to disabled people; draft and execute an escape plan for disabled people stranded in high-rise apartments; and educate and inform disabled people before and during an emergency.

In February 2011, U.S. District Judge Consuelo Marshall in California ruled the emergency response plan for the city of Los Angeles violated the ADA. Disability-rights groups sued the city in 2009.

“Because of the city’s failure to address their unique needs, individuals with disabilities are disproportionately vulnerable to harm in the event on an emergency or disaster,” Marshall wrote in her ruling.

Aaron Gallaher, a spokesman for the Florida Division of Emergency Management, said emergency-planning agencies closely followed damage from Hurricane Sandy and the New York disaster lawsuit ruling.

“When things like that happen, every emergency management agency becomes introspective,” Gallaher said. “It didn’t change what we were doing, but it did cause us to be a little more self-scrutinizing.”

Michael McManus of Drinker Biddle & Reath and lead attorney for the plaintiffs in the suit filed this week, said the District—which was a target on 9/11—is at risk for disasters.

“If you had ever told me I was going to be truly scared to die on the 11th floor of my office building on 15th Street, I would have told you you were crazy,” McManus said. “I never expected to see an earthquake in Washington. … But that happened.” (An earthquake rattled the Washington metro area in August 2011.)

McManus expects other cities to adopt disability-friendly plans after rulings in Los Angeles, New York and D.C.’s pending suit, he said.

“Not a lot of additional resources need to be spent, Just time and attention,” he said. “There is no consideration given to disabled people.”

Thursday, September 11, 2014

Actor RJ Mitte sees cerebral palsy as asset

From The AP:

For RJ Mitte, playing Walter White Jr. in AMC's "Breaking Bad" was art imitating life.

Like the 22-year-old actor, his character had cerebral palsy — just a more severe case, requiring Mitte to learn to walk on crutches and slow his speech for the role. Mitte says he also had to revisit some of the challenges he faced growing up, which served as "a great reminder" that helped him win the part.

"The past does haunt you, but it haunts you for a reason: to remind you of the mistakes and actions you've made along the way and you have to grow from those actions," he said.

Mitte says those experiences enabled him to bring something to the role that others couldn't.

"My disability has given me so many things that people will never understand unless you have it," he said in a recent interview. "Unless you've been through the physical therapy, unless you've been (through) the sweat, the tears, the family problems, the family struggles, but wondering how you're going to get that HMO, wondering how you're going to get those medical bills. You develop a different mentality and you develop a different look at how the world sees you and how you see the world."

Mitte isn't alone in winning roles that reflect his life: In his recently canceled sitcom, Michael J. Fox's title character had Parkinson's disease, as he does, and both "Glee" and "American Horror Story" feature actresses with Down syndrome.

Since the "Breaking Bad" finale, Mitte has played a wheelchair-bound character who suffered a spinal cord injury. He says other roles he's taken on include that of a young man with muscular dystrophy and another where he was "a bit mentally unstable."

"I'm not going to say that I don't get typecast from time to time but those are real characters," says Mitte.
He says that while he realized there is "an opportunity to learn something from these characters," he just likes to have a good time with the roles, adding that "at the end of the day you have to have fun with it because this business is stressful enough not to enjoy what you do."

Wednesday, September 10, 2014

Co-founder of British comedy troupe Abnormally Funny People says humour a seriously powerful tool for changing attitudes

From The Guardian in the UK:

Simon Minty (pictured) defies convention in all kinds of ways. Best known perhaps as the cofounder of the comedy troupe Abnormally Funny People (AFP), a collective of mainly disabled comics and actors that's been around in various guises for almost a decade, he is also a former high street banker, an entrepreneur and a disability consultant. And he is charting new territory once again with the launch of a comedy podcast.

Featuring disabled actors, comics "and generally interesting people" as guests, the AFP podcast, he says, is not trying to change people's beliefs. "This is first and foremost comedy. I want lots of disabled people to listen to it, but I also want it to be accessible to everybody so that people think, 'You know what? This is a different, quirky thing.' The hope is the podcast might be another step towards ensuring more disabled actors and comedians are in the mainstream of entertainment."

After two experimental runs, the inaugural podcast, Girls Just Wanna, is out this week. With guests actor Lisa Hammond and model and lawyer Shannon Murray, September's one-hour "discussion" touches on everything from being pointed at in the street to dating.

Minty, 46, sees humour as a powerful tool to relax people about an awkward subject, and is determined that the podcast should not be pigeonholed as "earnest" or "lecturey".

When asked if he ever dreamed he would have so many strings to his career bow, and that one of them would be comedy ("my evening job"), Minty says he used to be envious of a pal who always seemed to go to bed late and get up late and thought: "How can I work that out?"

Minty's funny bone is never far from the surface, but that's not to say he doesn't do serious. For a start, he says that grappling with issues such as discrimination and inclusion in a comedy context can be illuminating. "We will talk on the podcast about the Independent Living Fund, or about access to work. These are massive things that are having a huge impact on disabled people. Assisted suicide is another topic.

Sometimes we throw in a random gag because we can. Sometimes you need to prick the tension a bit.
"I think a good chunk of disability comedy is taking the mickey out of people who aren't disabled and how they behave. It's lovely, because the non-disabled person says: 'Oh yeah, that is me, but they're not being horrible to me'. So they laugh at their own behaviour, but they also learn from it."

On wider disability rights and social justice, Minty has achieved a substantial amount through his consultancy work over the past couple of decades. He advised a number of large companies, including banks, on how to implement requirements of the Disability Discrimination Act after it was introduced in 1995. While he doesn't describe himself as an activist, he is close to many campaigners and is vocal on a range of issues.

"It disappoints me hugely that the act has been in place for coming up to 20 years, yet the unemployment rate for disabled people has remained pretty level," he says. "That really devastates me. As for the whole idea of 'disablism', people don't even know what that means – it's like a made up word for them. It's going to take another 10 years before they even get the concept."

Referring specifically to disabled people in the workplace, he adds: "There are little moments 15 years later where I see companies slipping back a little, and I just think: 'Did we really make an impact?' And then there are other areas where we've come on in leaps and bounds."

Minty speaks admiringly of the enthusiastic supporters within companies, as well as across media and entertainment, who have helped drive progress alongside the activists and advocates. All of this gives him cause for optimism. "Five years ago, no one was talking about mental health in the workplace – now everyone's talking about it. Learning disability was something else that people didn't do, and now there's a huge amount of work on it."

He says the portrayal of disability on screen has come a long way since he was a boy and people of small stature were almost always depicted on TV and in films in a negative or derogatory way that horrified him. "They were dressed up as some freakish clown or an alien … or were the butt of a very poor joke. It used to make me flinch." But even if things have improved, he nevertheless cautions against complacency. "What you have to be very careful of is that organisations will say: 'Oh, we're doing our week of …' and that's it for the rest of the year."

He applauds recent moves by the BBC to introduce new "diversity targets" throughout the organisation, including for disabled people. He was consulted by the director general, Tony Hall, while the policy was being drawn up. Asked if he worries about it being a potential box-ticking exercise he says that, done well, it can constitute effective auditing. "So long as it's lots of boxes and you do it regularly."

He would like a version of the podcast to transfer to radio or TV, but the bigger picture is never far from his mind. "What I sometimes wonder about media and other organisations is that they say: 'Oh, we can't do that – we're worried about tokenism', and I say: 'Yeah, but that means you won't do anything!' Sometimes you just need to force it."

Friday, September 5, 2014

NY Times review of 'Rocks in My Pockets,' animated film about depression

The NY Times review:

With “Rocks in My Pockets,” Signe Baumane presents a sharp, surprising and funny animated feature, plumbing the depths of depression via her family history. Guided by Ms. Baumane’s almost musically accented voice-over, this hand-drawn debut feature is based upon the mental struggles of her Latvian grandmother and other relatives. It’s told with remorseless psychological intelligence, wicked irony and an acerbic sense of humor.

Part questioning of received family mythology, part anatomy of melancholy, this idiosyncratic film treats what might seem to be unapproachable subject matter. But Ms. Baumane’s wry storytelling and keen figurative visuals produce an engaging act of empathy across generations. With deceptively plain drawings and some papier-mâché, the story depicts her grandmother’s thwarted sense of self during her marriage to a charismatic, failed entrepreneur, who fathers her eight children. There follows a daisy chain of tales about sufferers and suicides in what Ms. Baumane describes as her beleaguered gene pool.

Miraculously, the film never sinks into bleakness, and that’s largely because of Ms. Baumane’s tendency to speak her mind, sometimes unpredictably. Her family’s sense of practicality is repeatedly rivaled by the cruel pragmatism of survival necessitated by mental illness: the “darkness visible” (as William Styron called it) that can remain invisible to others for reasons of ignorance or denial.

The bravery of Ms. Baumane’s own coping methods (which some may disagree with) brings her tough-minded film to a cleareyed, forward-looking conclusion that doesn’t lose sight of her demons.

OWN's "The Specials" top fall TV pick in People magazine; premieres as marathon September 7

From People magazine. The OWN website for "The Specials."

Welcome to the ordinary life of some extraordinary kids in Britain.

This sensitive, touching show, which began as a prize-winning British Web series, is about a group of mentally challenged young people living in a supervised home in Brighton.

And of course, hanging out together just as if this were "The Real World" or -- where are the sands of yesteryear! -- "Jersey Shore."

They sing at karaoke clubs, vacation in Malta, date and break up. The difference is the more you know them the more you feel for them and appreciate their company.

This airs as a marathon, by the way, so program the DVR. (OWN Sept. 7, 2:30 p.m.)

Thursday, September 4, 2014

MIT Style Lab makes clothes accessible for people with disabilities

From The Boston Globe:

The helper first wrestles Ryan DeRoche’s clenched left hand, then his stiff arm, into his coat sleeve.DeRoche’s right arm also refuses to bend, rigid from a bike accident three years ago that battered his spinal cord and paralyzed much of his body.
Now the real battle of friction and patience begins. The black coat is taut, stretched across DeRoche’s back as he sits in his power wheelchair. He encourages the helper to push his other arm through the second sleeve. “You won’t hurt me,” DeRoche, 32, tells her, a student named Kira Bender. She pulls, pushes, tugs. “Go, go, go, go, go!” DeRoche urges. Finally, success. “You got it,” he cheers.

Total time elapsed: four aggravating minutes.

Nearly a quarter-century after the Americans with Disabilities Act made buildings, jobs, and phones more accessible, most clothing is still as inaccessible as ever. Pants are designed to fit — and look best — when wearers are standing, not sitting in wheelchairs. Zippers, buttons, jewelry clasps, tight-fitting dresses, and jackets with linings are daily grievances for anyone with limited dexterity. Some prosthetic limbs chafe against — or do not fit beneath — clothing designed for able bodies.

It is exactly this problem that DeRoche has asked the new MIT Open Style Lab to fix. His team includes an engineering student, a design student, and Bender, a Boston University master’s student in occupational therapy. The goal: Create a coat that fits his needs.

The Style Lab is the brainchild of Grace Teo, who received a PhD from MIT in medical engineering this spring. She and co-chair Alice Tin chose 24 students from MIT and other colleges, creating eight teams to design clothing for clients with amputations, spinal cord injuries, early-onset arthritis, and other disabilities.

For DeRoche, finding an accessible jacket is more than a matter of convenience. Like many quadriplegics, he is vulnerable to pneumonia. Sometimes he endures the cold rather than tussling with a coat.

“This may be one of those new frontiers,” said Oz Mondejar, senior vice president of mission and advocacy at Spaulding Rehabilitation Network. “It’s still not there. It takes advocacy.”

Mondejar, who was born without a right hand, knows well the frustration of inaccessible fashion. His job requires him to wear a tie, and he struggles every morning to fasten the tight neck button on his dress shirt with one hand.

The few companies in the US that design accessible clothing tend to target the elderly market. One of the Style Lab’s clients, a professor who uses a wheelchair, cannot find formal clothing that allows him to use the bathroom independently.

“There’s a couple of companies that make clothing and it looks horrible,” DeRoche said. “It’s like granny pants. They have elastic waistbands.”

The lab, created by Teo and Tin, was launched with funding from MIT and private donors, including Eileen Fisher, the women’s clothing company. Each team is given $500 to develop its project. The students are not paid, but they hold the patents and can market the clothing that they develop.

Teo and Tin hope to repeat the program, which meets on Saturdays during the summer, next year. The students, who work with mentors, made their final presentations at MIT Aug. 16 and will discuss their designs at the Museum of Science in October.

One of the Style Lab’s clients is Mike Benning (pictured), whose left arm was amputated below the elbow to remove cancer when he was 14. Last year, he was fitted with the most technologically advanced prosthetic hand in the world. Now he can use a touch-screen phone, type on a computer, and hold a nail while he hammers it.

Still, there have been some problems. When Benning — the business development manager of Hanger Clinic, which provides orthotic and prosthetic devices — puts on a coat, the sticky silicone of his new hand gets caught in the lining.

First, his team tried, unsuccessfully, to find a fabric that wouldn’t stick. Then, with a 3-D printer, they created a sheath for his hand that kept the silicone away from the coat. The team is working with a lawyer to patent their inventions.

Electrodes rest on the skin of his residual limb, receiving impulses from his nerves and relaying them to the prosthetic hand. Problems arise when he sweats and the moisture interferes with the electrical conductivity. He might try to open his hand, and instead, his wrist might rotate. So the team has created several devices, including one that would wick moisture away from the skin.

“I think if [the Open Style Lab team] can come up with a solution to this and improve it, it has the potential to improve the lives of millions around the world,” Benning said.

Barbara Harrison, another Open Style Lab client, underwent a voluntary amputation in 2013 after she suffered through three years of intense pain when a broken foot never healed properly. A half-dozen specialists could not ease her agony.

After the surgery, she spent a few weeks at Spaulding. She picked out a prosthetic leg with a swirly blue pattern called “Groovy.”

“Spaulding did a very good job of teaching me how to transfer from chair to wheelchair, and how to use the walker, and how to get dressed,” she said. “Clothes should have been the easy part.”

Instead, she struggled to find pants that fit over the device and could be pulled up over her knee to adjust Groovy during the day. It was easier to wear shorts or capris, so all last year, even through the iciest days of winter, that is what she did. But, she notes, “I can’t go to church in shorts.”

One Tuesday night this summer, Deniz Aksel and Niki Patel ring the doorbell of her first-floor apartment in Winthrop, bringing the newest version of one of their prototypes.

Aksel, an MIT engineering student from Turkey, and Patel, a graduate student in occupational therapy at American International College, have brought Harrison their invention: a fabric device that wraps around the top of Harrison’s prosthetic, secured with velcro, to help her pants slide over the device. They call it the Prosthetic Ridge Guard, or PRG. Patel sits on the floor at Harrison’s feet and helps her put it on.
“How’s that feel?” Aksel asks. Harrison walks around her living room.

“It’s not bugging me!” she says, surprised.

Responds Aksel: “That’s what we want to hear.”

Aksel has been grinning impishly all night about “some crazier ideas” the team has been planning. One, he says, is a device that, with the flick of a switch, will automatically roll up pant legs.

“Oh, that’s awesome!” Harrison says.

On a rainy Saturday afternoon, the eight teams meet at MIT to discuss their projects. Bender speaks about Team Ryan’s progress.

“Ryan, as you can see, is a young and fashionable guy,” Bender begins, smiling at DeRoche, who sits off to the side, wearing black spike earrings, a blue T-shirt, and shorts.

“Rain is one of the things that especially bothers his skin,” she said. “First when we met Ryan, he described the sensation of rain on his skin as needles.”

The team designed a jacket — they call it the Rayn Coat — that is waterproof and zips in the back so it can slip more easily over his arms. They attached a tether with loops to the zipper, long enough to pull to the front so DeRoche can adjust it himself. A pocket in the front protects his cellphone.

One improvement, though, is already clear. Total time to put on DeRoche’s coat: one minute.

Wednesday, September 3, 2014

Germany opens memorial to Nazis' disabled victims

From The AP:

BERLIN — Germany has inaugurated a memorial to more than 200,000 people with physical and mental disabilities who were killed by the Nazis after their lives were deemed "worthless."

The memorial in Berlin is close to monuments to the Jewish Holocaust victims and to the Nazis' gay and Gypsy, or Roma, victims.

The 24-meter (79-foot) blue glass pane stands on the site of a villa where the mass murder of patients at hospitals and mental institutes was coordinated starting in 1940. The euthanasia program's methods included using gas chambers.

Sigrid Falkenstein, whose aunt was killed in 1940, said Tuesday it was "a technology of killing tested and carried out for the first time on defenseless, sick and disabled people, a test run for all the Nazis' following programs of mass eradication."