Two years after Russian ban, 'taboo' hangs over disabled children denied U.S. adoption

From Radio Free Europe:

Vitaly (pictured) was abandoned at birth.

With Down syndrome and a life-threatening heart condition, the Russian orphan's prospects looked bleak.

Luck unexpectedly struck in October 2012, when an American couple visited him at his orphanage in Moscow. The couple, Jenny and Aaron Moyer, explained they wanted to become his parents and promised to come back for him soon.

"He almost died once, before the adoption process started, so we were very happy to find parents for him," says Alyona Sinkevich, who worked for the U.S. adoption agency that put the Moyers in touch with Vitaly.
Two years later, Vitaly, who is now 6, still lives in an orphanage.

He is one of 259 Russian children whose pending adoption by American families was terminated when Russia abruptly barred U.S. citizens from taking in Russian orphans.

The ban, signed by Russian President Vladimir Putin on December 28, 2012, left Vitaly with nothing more than a handful of family pictures and a broken promise.

The Moyers have filed an appeal with the European Court of Human Rights.

But the odds of their ever taking custody of Vitaly, whom they already consider their son, are extremely slim.

'The Law Is Absolutely Horrific'

The ban has sparked international outrage, with human rights advocates accusing Russian officials of sacrificing children for their political agenda.

Sinkevich says children like Vitaly stand "almost no chance" in Russia, where most orphanages are woefully ill-equipped and staff often untrained to care for children with special needs.

Vitaly was able to obtain a pacemaker only after the director of his first orphanage raised money from private donors.

Boris Altshuler, a leading children's right advocate, says Moscow made a "terrible mistake" by introducing the so-called Dima Yakovlev law -- named after a Russian-born toddler who died in 2008 after his adoptive American father accidentally left him in an overheated car.

"This law is absolutely horrific," says Altshuler, who heads the nongovernmental organization Children's Rights. "Our deputies and politicians couldn't care less about children."

The ban was instituted in retaliation for a U.S. law that placed sanctions on Russian officials believed to be implicated in the prison death of Russian whistleblowing lawyer Sergei Magnitsky.

The Russian government has encouraged its citizens to make up for the loss of U.S. adoptive families.
But while authorities have touted a rise in the number of domestic adoptions, Russians are still reluctant to take on children with special needs.

There are currently more than 600,000 orphans in Russia, every fourth a child with special needs or suffering from an illness.

A Taboo Subject

Until 2013, the United States had been the top destination for adopted Russian children. U.S. families have taken in more than 60,000 Russian orphans over the past two decades, many of them children with special needs.

Rights activists are also concerned about the secrecy surrounding the fate of orphans whose adoption in the United States was cut short by the ban.

Altshuler says he has almost no information on these children and suspects authorities of imposing a moratorium, effectively making discussion of the matter "taboo."

Sinkevich herself has been unable to find out where Vitaly is currently institutionalized.

"We fear for his life all the time, every day, because there were several occasions when his cardiostimulator stopped," she laments.

The director of Vitaly's former orphanage, the one who helped buy his pacemaker, confirmed that Vitaly is alive and well but said she could not disclose his whereabouts.

Sinkevich had been processing six adoptions by American families when Russia introduced the adoption ban. None of the six orphans made it to the United States.

According to information she was able to glean from orphanages, four of these children were placed with Russian families -- a success she attributes to intense media coverage in the wake of the ban.

The sixth orphan, a toddler with Down syndrome called Dmitry, remains in an orphanage.

'Buried In The Village Of Fedyakovo'

At least one child, also with Down syndrome, is reported to have died after being denied adoption in the United States.

That child, Daria, never met her prospective U.S. parents. The ban came even before they were able to visit her at her orphanage near the central Russian city of Nizhny Novgorod.

Russia officials have categorically dismissed reports that Daria died last year of a heart ailment.

Both volunteers and Daria's would-be American parents, however, have been cited as confirming her death.
"Doctors did everything in their power; she underwent several serious heart surgeries," says Veronika Genkina, a journalist based in Nizhny Novgorod who was briefed by local officials about the case.

"According to volunteers, her death took everyone by surprise. Dasha is buried in the village of Fedyakovo."
The director of Daria's orphanage declined to comment on the case.

Orphanage No. 13 in St. Petersburg is one of the rare institutions willing to share detailed information about children left behind by American families.

Four of the city's 33 children whose U.S. adoption was derailed two years ago came from this orphanage, which is pioneering new methods allowing more bonding between children and their caretakers.

Three of them have already been placed with new families in Russia.

The Lucky Ones

Yana, a girl with Down syndrome, was taken in by a Russian couple who had recently adopted another orphan with the same condition.

Svetlana, who was just a few months old when the Dima Yakovlev law took effect, was also able to find a new home in Russia after undergoing a liver transplant.

"Thanks to the fact that Sveta's story was made public, a Russian family came forward," says Maria Solodunova, a psychologist at the orphanage. "They adopted her after the operation and are now raising her alongside their own biological daughter."

Timofei, another toddler with Down syndrome, has also found a home.

Like Vitaly, he had already met with his prospective U.S. parents when the adoption ban struck.

"He had photos of this family. He liked to display them for visitors. He was happy to show his new family," remembers Solodunova. "Unfortunately, the new law stripped this family of any possibility to take this child into their home."

Footage of Timofei sadly leafing through the photographs of his American family was widely broadcast in Russia, where he was soon dubbed "The Boy With the Album."

Solodunova says this helped Timofei draw "a lucky ticket." His biological parents eventually decided to take him back, while keeping in close touch with the U.S. family that had planned to adopt him.

"This is a unique case when a child was able to find not just one family, but two," says Solodunova.

Butterfly Children

Little Nikolas has not been as lucky.

The 3-year-old suffers from epidermolysis bullosa, a severe skin disease that requires intense daily care. Young patients are also known as "butterfly children," in reference to the fragility of their skin.

"We considered the family that decided to adopt Nikolas shortly before this law as his only chance," says Solodunova. "This family had friends who adopted a child with epidermolysis bullosa from a Moscow orphanage, so it was a very well-informed decision on their part. Unfortunately, it fell through."

Nikolas remains at Orphanage No. 13.

With the Kremlin showing no easing adoption rules for U.S. families, Nikolas, Vitaly, and thousands of other children face lifetime institutionalization in Russia.

The Russian children's ombudsman, Pavel Astakhov, has actually urged the Kremlin to extend the ban to other countries.

Known for his staunch support of Putin, Astakhov has described the international adoption of Russian orphans as a "semi-legal scheme of exporting children."

"There's a Russian proverb that goes, 'The further away from the tsar, the safer your head,'" says children's rights activist Altshuler. "These toddlers, these disabled babies found themselves too close to the tsar, to big politics, and to the zeal of our deputies. They were so close that we will unlikely find out anything about them now."

British actor Mat Fraser: 'Someone had the balls to make a drama starring freaks'

From The Guardian:

“I have the face of a pretty lad. A handsome face. Could you imagine this mug on a normal body? I could have ruled the world.”

So opines Paul the Illustrated Seal Boy in American Horror Story: Freak Show, currently in its final weeks on FX in the US.

British actor Mat Fraser (pictured), relishing his first American screen role, as Paul, contemplates the question. “Well, yeah, I can imagine that, actually. I would have been a complete arsehole. Some people probably think I already am one.”

Taking a day off in his apartment in New Orleans, where American Horror Story is being shot, Fraser, 52, splits his time between New York and his hometown of London. He has enthusiastically delved into the artistic weft of his temporary home, though, performing in the Dirty Dime Peepshow, a local monthly burlesque revue, between on-set duties. “It’s a really great city for freaks,” he says, smiling.

It’s a freakishly warm December day, and Fraser – handsome face and all – is basking in the vindication of a long-awaited role. “I knew that if I could tread water, someone would have the balls to produce a big-budget drama starring freaks. I’ve always visualised it.”

The dreaming started early, with art winning out over delinquency for young Fraser – “There but for the grace of my disability go I,” he muses. With forays into music, edgy cabaret and, occasionally, British television, he forged an artistic path revelling in the power dynamics of his appearance. His disability – phocomelia due to his mother being prescribed the drug Thalidomide during pregnancy – endowed him with a persona: Seal Boy.

While working in the actual Coney Island Circus Side Show in 2006, Fraser met his now-wife, the American neo-burlesque performer Julie Atlas Muz. Their ongoing collaborative relationship helped him land the part of Paul. Fraser was spotted in New York in Beauty and the Beast, a racy reworking of the fairy tale that had already gained critical acclaim from a run at London’s Young Vic.

“A woman came based on these rave New York Times reviews,” says Fraser. “She called her friend, who was producing American Horror Story. I got a call to audition, which I did via my laptop, and was offered the job the next day. It’s one of those chance castings you don’t think really happens.”

Paul’s character was originally a lizard man, covered head to toe in tattoos. When Fraser brought with him the Seal Boy persona, they compromised, arriving at Paul the Illustrated Seal Boy.

“I fought against having tattoos on my face,” says Fraser. “My face conveys my emotions and I wanted to be recognised. I wanted people to be able to see me acting. To see me.”

Fraser suspects the “normal body” line was an empathetic leap by the writers: “If so, they were woefully wrong, but what can you expect from non-disabled writers?”

“I don’t blame them,” Fraser continues. “I wanted to do the lines. I’m not going to say, ‘I don’t think a disabled person would think that.’ I used to be like that. I’ve learned a lot about disability portrayal, and sometimes you have to let that stuff go. Yes, it’s important and in my own work I talk about it, but sometimes you just have to want to do the acting.”

Questions arose around the politics of casting able actors in freak show roles in American Horror Story. Fraser hears the arguments, but wants to evolve the discussion.

“You’re talking about using able actors to play disabled roles now? I was talking about this in 1997. I’m kind of done talking about it,” he says. Fraser also wants to get beyond trite narratives of overcoming disability. “I won’t do inspiration porn, I just won’t. Yes, we can discuss how difficult it is getting work as a disabled actor, but let’s talk about the acting and the work and the art, and not about if I was bullied as a teenager.”

Fraser sees American Horror Story as groundbreaking, particularly Paul’s portrayal as a two-timing lover. 

“It’s profound,” he says. “Giving storylines like that to a deformed person is radical. We’re the first disabled people on US TV, but this is a show about freaks, so they see me and think ‘good casting’. A world where if even your teeth are wrong you don’t get gigs? It’s a tough nut to crack.”

As filming wraps up, Fraser is cheerfully pragmatic. “Friends encouragingly tell me this is it for me, but I’ve had enough dips to know its likely I’ll be back covered in fake blood at Bethnal Green Working Men’s Club.”

Will his new profile inform future artistic directions? “There are some things I won’t do any more. I’m trying to obey the rules with the arched eyebrow of possibility and not the furrowed brow of cynical negative assumption. But you know what? Maybe some rules don’t apply to me. They’re rules of thumb. And you know what I haven’t got? Thumbs.”

Deaf students in Iowa test run new movie tech

From The Des Moines Register:

During a week when “The Interview” dominated most movie-related headlines, a different film had students from three Des Moines schools talking.

Members of the Deaf Kids Club — an after-school program for deaf and hearing-impaired students from Capitol View Elementary, Hiatt Middle School and East High School — took a trip to Jordan Creek’s Century 20 theaters to see “Big Hero 6.”

Taking in an afternoon movie may not be big news for most kids, but some new technology made the experience special for club members.

Students were given devices that displayed captions to help them follow the plot, which involves a group of animated superheroes assembled to fight a masked villain. Students with cochlear implants also could use neck loops that transmit sound to the implants.

“Many of our students have actually never been to a movie before, or if they have, they haven’t had that closed-caption access,” Polly Fullbright, dean of students for the deaf and hard of hearing program, said through an interpreter.

“Movies for a long time have been a bear in the deaf community. This is pretty new technology they set up, but finally they have devices that we can access any movie (with).”

The Deaf Kids Club meets once a month after school. “It’s an opportunity for the hard-of-hearing kids to socialize and have some time with friends after school,” Fullbright said.

The students were excited by the opportunity to use the new devices.

Sembetu Dalay, a fourth-grader at Capitol View Elementary, attended a movie last summer, but she said she was unable to follow along completely because of her hearing impairments. After discovering the captioning devices — available for all films shown at the Jordan Creek theater — she’s excited to attend more movies in the future.

“Students didn’t know that they could come to any movie, at any time at this theater, and now they know this,” Fullbright said. “They know how to ask for the closed-caption device, and they know what it looks like.”

Cooper Myers, 7, of Clive, attended the movie with his mother. Molly Myers was excited for her son to have the chance to use the new technology.

“We saw this before, so it will be interesting for him to see it and have the wording there, too,” Myers said. “They’re not getting all the input that other kids are getting, and this gives them that input visually.”

The captioning devices and neck loops for cochlear implants can be requested at the Century Theater box office.

The Wynnsong 16 theaters in Johnston offers captioning devices for select movies. It’s in the process of upgrading its sound-amplification headphones for hearing-impaired people.

Fridley Theatres, which has movie houses in Ankeny, Indianola and Pleasant Hill, offers sound-amplification headphones.

Oregon disability rights activist, filmmaker: 'We're not inspirational. We're just us.'

From The Oregonian:

On Saturday, two Portland women will debut a series of comedic shorts exploring disability identity and culture. "Very Special Episodes" is not your typical disability-themed film. There is no inspirational obstacle-overcoming. No swelling music. No feel-good moral.

"We're not inspirational," Caitlin Wood said. "We're just us."

The Oregonian spoke with Wood, a 32-year-old writer and disability activist (pictured). Wood grew up in Arkansas then moved to Portland in 2000 to attend Reed College. There, her life changed, she said, when she took a disabilities studies class. She learned about activists who fought for the passage of the ADA and for accessible buses.

She teamed up with filmmaker Cheryl Green, 40, to create the comedic films.

Tell me about the project, Criptiques on Film: Very Special Episodes.
 
It started as an anthology I edited of all-disabled authors. I wanted to expand on that project. I started working with Cheryl Green. We decided we wanted to do some films. We received a grant from RACC to make some short comedy disability films. The goal was to present disability in a normalizing way that you just don't see elsewhere. You don't see this kind of representation. It's not inspirational. It's not tragic. It's just us.

We're both disabled and very strongly into social justice. But this is not that. This is just about fun and comedy.

What portrayals of disability do you see elsewhere?

There is a huge dearth of disability portrayals on TV and in film. Only 1 percent of characters in 2014 prime time were disabled. I think about that statistic a lot and how that affects the psyche of disabled people when we are completely erased. When there are disabled characters, it tends to be very stereotypical and hackneyed portrayals. The person always has to be inspirational. They have to overcome their disabilities. 

It's always presented as if the disability is the obstacle instead of the disabling society. Also, when you see a disabled character, 99 percent of the time, the actor isn't even disabled. The characters tend to be white men who are physically disabled. There's no diversity, no nuance.

That was one of the biggest motivations for the book. The goal was to have disabled people talking in their own words. It wasn't just white, physically disabled people. I wanted to have cross disability, people from different backgrounds.

What do you mean cross disability? Can you talk about the range of disabilities represented by Criptiques?

People with chronic pain, people with autism. There's a really great story from a blind burlesque dancer. This is actually what disability culture is. People are doing amazing work, but you just don't see it.

Tell me about the PSA you posted on YouTube. It starts with, "Dear Diary, today was inspirational. Scratch that, I was inspirational. ... I did a lot. I even brushed my hair."


It's called "Your Daily Dosage of Inspiration." It's a satire of what is referred to as inspiration porn, when disabled people are presented as inspiration. Like when you see posters that say "The only disability in life is a bad attitude" and other things that are there to make non disabled people feel good about themselves. It's not acceptable to view disabled people doing everyday thing as inspirational. It should be normal.

What are the effects of disabled people being pigeonholed into that role?

It's very damaging on a psychological level. Disabled people feel like they're not allowed to be disabled. They're supposed to be ashamed. Or they're supposed to be exceptional. They have to be put up as some sort of inspiration for non disabled people. That's their role. That's the only way they'll achieve value, if they're inspiring. It's just a really insidious approach to disability, labeling everything disabled people do special. That separates us.

On that note, can you tell me why the film is subtitled "Very Special Episodes?"

It's a play on disabled people constantly being labeled special and a comment how infantilizing that is. Also, I grew up watching after-school specials. I love them. I love how cheesy and corny they are. We thought it would be fun to make a play on that.

Tell me about the episodes. What will people see Saturday? 

There are several episodes. We're not necessarily likeable. We're not choosing to do the right things. We're not inspirational. We're just us. We're going to show four videos. They're all pretty short. Then we'll have a Q&A. We'll be selling the book and hopefully just having a really interesting conversation about disability culture. Most people aren't even familiar with that phrase. I'm hoping people who are interested in seeing a different perspective on disability will show up because I think it's going to be really fun.

Australian disability activist, TED speaker, former Ramp Up editor, comedian Stella Young dies

I had the honor of meeting Stella Young in July 2014 in Washington, D.C. when she was touring the USA as part of the U.S. State Department's International Visitor Leadership Program. This picture is from our meeting, and she proudly shows her tattoo, "You get proud by practicing," which is from a poem by the late disability writer/poet Laura Hershey.

She was a longtime disability activist, editor, writer, comedian, but more importantly, she was confronting ableist attitudes worldwide with her TED talk about inspiration porn and her comedy. In my opinion, she is the one who truly began the attack on patronizing inspiration porn about disabled people with her 2012 article, "We're not here for your inspiration."

Young had gained so much international recognition from her June 2014 TED talk that when news of her death became known on social media in the northern hemisphere Dec. 7, her name became a top trending topic on Twitter. Her most recent article, from Nov. 22, titled, "Stella Young's letter to herself at 80 years old," was being shared all over social media.

Although known for her disability activism, she was also a fierce advocate for women's rights and LGBT equality in Australia, according to Melbourne writer Sinead Stubbins. "Stella was a champion of non-normative communities, and a critic of the frameworks that exploit them," Stubbins writes.

She was editor of Australia's ABC Ramp Up, a news and opinion website by and for disabled people started in 2011, which was shut down by the network in June 2014. Most disability advocates in Australia felt the end of Ramp Up was a travesty. A Save Ramp Up movement began soon after. Dr. George Taleporos, who leads the Save ABC Ramp Up campaign, wrote in The Guardian in June 2014: “Our discussion space will be gone. The voice of people with disabilities, a voice the ABC has nurtured for the past three and a half years, will be silenced."

University of Wollongong journalism lecturer Shawn Burns, who is affiliated with Save ABC Ramp Up, said, "Ramp Up was providing space for people with disabilities and disability issues to be presented as a part of the greater fabric of society – with all diversity. The mothballing of Ramp Up is a retrograde step."  Its shuttering robbed Australia of much needed discussion of disability issues by disabled people. Taleporos chats with Burns in this video about the shut down of Ramp Up.

Stella Young has hundreds of articles and talks, most available online: 

• Her writings for ABC's The Drum, an opinion website and TV show:  http://www.abc.net.au/news/thedrum/stella-young/2831584
• A list of some of Young's writings that ABC curated: http://www.abc.net.au/news/2014-12-08/what-we-learned-from-stella-young/5950876  
• A list of some of Young's presentations and comedy: http://mobile.abc.net.au/news/2014-12-08/best-of-stella-youngs-comedy-and-public-speaking-engagements/5950766
• Social media tributes to her:  http://www.abc.net.au/news/2014-12-08/stella-young-tributes-from-social-media/5950776

The story about her death from ABC News in Australia:

Prominent disability activist, writer and comedian Stella Young has died aged 32.

Ms Young was the former editor of the ABC's disability news and opinion website, Ramp Up.
Her family said she passed away unexpectedly on Saturday evening.

"With great sadness we acknowledge the passing of Stella Young, our much-loved and irreplaceable daughter and sister," the family said in a statement.

"Stella passed away on Saturday evening, unexpectedly, but in no pain.

"A private funeral will take place soon, followed by a public event in Melbourne, with more details to come.
"Our loss is a deeply personal one. We request privacy during this difficult time."

Ms Young was born in Stawell, in country Victoria, with Osteogenesis imperfecta, a genetic disorder that causes bones to break easily.

Her advocacy began at the age of 14 when she conducted an access audit on the shops on the local main street.

She was an ambassador for Our Watch and has been a member of various boards and committees in the disability sector.

Ms Young proudly described herself as a "crip" despite objections by others.

"People get all up in arms when I describe myself as a crip because what they hear is the word 'cripple' and they hear a word you're not allowed to say anymore," she told 720 ABC Perth in 2012.

"Crip is a word that I find empowering the same way that some members of the gay community, but not all members of the gay community, find the word 'queer' empowering."

Ms Young was a member of the Victorian Disability Advisory Council, the Ministerial Advisory Council for the Department of Victorian Communities, the Youth Disability Advocacy Service and Women with Disabilities Victoria.

She was a two-time state finalist in Melbourne International Comedy Festival's Raw Comedy competition and hosted eight seasons of Australia's first disability culture program, No Limits, on Channel 31.

She had been a regular contributor to ABC's The Drum since 2011, writing about issues for disabled people in the wider community and the disability services sector.

Ms Young also wrote for Mamamia and The Punch.

She campaigned hard against the idea that having a disability made her exceptional or brave.

"I want to live in a world where a 15-year-old girl sitting in her bedroom watching Buffy the Vampire Slayer isn't referred to as achieving anything because she's doing it sitting down," she said in April this year.

"I want to live in a world where we don't have such low expectations of disabled people that we are congratulated for getting out of bed and remembering our own names in the morning.

"I want to live in a world where we value genuine achievement for disabled people, and I want to live in a world where a kid in Year 11 in a Melbourne high school is not one bit surprised that his new teacher is a wheelchair user."

"Disability doesn't make you exceptional, but questioning what you think you know about it does."

Stella Young's background from her IVLP paperwork:

(Photo by BA Haller)

 From the story about her death from ABC News in Australia:

Stella Young was 'incisive, challenging and provocative'

ABC managing director Mark Scott described Ms Young as "an unforgettable communicator and a passionate advocate".

"As a writer and broadcaster Stella was sharp and incisive, challenging and provocative," he said in a statement.

"She was very warm and generous, the first to laugh and to make us all laugh.

"Stella helped us understand disability issues by sharing with a raw honesty about her own life and forcing us to reconsider how we think about disability and create an environment where those with disability can best get on with their own lives.

"She took great delight in challenging conventional wisdom and lazy thinking."

FCC creates disability advisory committee

From Broadcasting & Cable:

The FCC is creating a Disability Advisory Committee and will accept nominations for members through Jan. 12, 2015.

The new committee will be a place where consumers and stakeholders can make recommendations and get feed back on issues ranging from device accessibility and emergency services to hearing aid compatibility, closed captioning and video description.

Emergency services is a particular issue in the transition to IP networks and new tech support of old tech critical communications.

The commission will use the committee for "advice, technical support, and recommended proposals on those issues and more."

The FCC is looking for CEOs and CTOs to serve two-year terms on the committee, with at least three one-day meetings per year and at least one working group or subcommittee meeting, which can be conducted informally. The likely start date for the new committee is first-quarter 2015.

Anyone interest in nominating someone or serving can check out fcc.gov.

FCC Chairman Tom Wheeler signaled early on in his tenure that universal and nondiscriminatory access to telecommunications means doing some catch-up work on serving the disabled community.

The FCC unanimously voted in February to require program creators and distributors to make their best efforts to improve the quality of closed captioning. 

Itzhak Perlman, other musicians with disabilities make their voices heard

From the Wall Street Journal. Pictured is Itzhak Perlman in his motorized scooter.

At a New York Festival of Song concert in November, the organization’s artistic director and co-founder, pianist Steven Blier, zoomed onto the stage in his battery-operated wheelchair.

“This takes a minute, so study your program notes,” Mr. Blier said to the audience as co-founder Michael Barrett held a piano chair for him to slide into, and then tucked the wheelchair away.

Mr. Blier launched into a program he dubbed “Art Song on the Couch,” connecting late 19th- and early 20th-century German songs with the ideas of Sigmund Freud.

Mr. Blier, who has a degenerative muscular disease called facioscapulohumeral muscular dystrophy, is one of three New York-based classical musicians with coming concerts who have navigated substantial careers despite significant health challenges. The careers of these musicians illustrate the difficulties, decisions, discrimination and even advantages that occur when health intersects with the physical demands of being on stage.

“A performing musician has to deal with these issues in a public forum, in a way the average person doesn’t,” said Joseph Straus, a music-theory professor at the CUNY Graduate Center and author of the book “Extraordinary Measures: Disability in Music.”

“It’s a distillation and heightening of what any person with a visible disability does every time they step out their front door,” he said.

Renowned violinist Itzhak Perlman , who on Wednesday will give his first solo recital in New York in seven years, has dealt with these issues for most of his life. He contracted polio at age 4, and at least early in his career people focused more on what they saw—a child with crutches—than heard, he said.

“I had to actually prove more, with greater intensity, that I was a genuine article as far as my music was concerned,” said Mr. Perlman, 69 years old.

As the violinist’s career skyrocketed, his perspective on disability changed. Mr. Perlman shifted from despising what he refers to as the “Crippled Violinist Plays Concerto” headlines to advocating for people with disabilities of all kinds, especially with regard to accessibility.

But it isn’t always easy, even for a well-known violinist who zips around on an electric scooter faster than his two leg-bound companions can walk. “Just recently, I was sitting on a plane, and the flight attendant asked my wife if I had a chair,” Mr. Perlman said. “This person did not talk to me because I was the problem. People think if you’re in a chair, you have a problem digesting information.”

The cellist Alisa Weilerstein, 32, who solos with the New York Philharmonic this week, was diagnosed with Type I diabetes at age 9. She began playing professionally at 14 but made a conscious decision not to tell her manager about her condition.

“I didn’t want them to think there was anything I couldn’t do,” she said.

These days, Ms. Weilerstein’s diabetes is under control because she assiduously manages it, testing her sugar about eight times a day and wearing an insulin pump, which is inserted into her abdomen with a catheter.
When performing, she wears the pump in what she calls her “Bond Girl pouch,” hidden under her dress.

Mr. Blier, 63, hasn’t always used a wheelchair. His muscular dystrophy is progressive, so he has, until several years ago, used a cane. And while it has made some things hard, there have been silver linings, he said, like the way that being forced to relearn elements of piano technique has made him a better teacher.

While he has accompanied well-known singers such as Renée Fleming and Susan Graham, he counts his muscular dystrophy as partially responsible for focusing his career toward New York Festival of Song, which presents thematic recitals and is, he said, his personal passion.

“I had set out to play for the big names of the day, and I did,” Mr. Blier said, “but I honestly find what I’m doing now much more fascinating.”

Certain common threads connect the musicians. Most were frustrated with media coverage early in their careers, which focused on health or disability.

“I was simply a musician, and I wanted the articles to be about music,” said the percussionist Evelyn Glennie, 49, who is profoundly, or nearly entirely, deaf.

Yet the musicians interviewed, by a certain point in their career, became not only comfortable talking publicly about health, but now use their status as an advocacy tool.

This ranges from Mr. Perlman’s high-profile speeches at polio fundraisers to Ms. Weilerstein’s conversations with families whose children have recently been diagnosed with diabetes. The saxophonist and Prism Quartet executive director Matthew Levy, 50, who has tinnitus, which causes phantom sounds, including ringing, in the ears, gives presentations about tinnitus and other playing-related injuries to high-school students.

Many musicians spoke of the need to be overprepared. “It’s what black people say, it’s what Asian people say,” said the mezzo-soprano Laurie Rubin, 36, who is blind. “You have to be better than the average white person, because people are going to put you in that sort of box.”

Those with physical disabilities are bound to meticulous logistical planners of everything from accessible concert halls to transportation to bathrooms.

And then there is discrimination, which shows up in subtle, and less than subtle, ways.

“My manager says, ‘There are so many conductors who won’t even hear you because they know you’re blind,’” said Ms. Rubin, who is also co-founder of Ohana Arts, a performing-arts festival in Hawaii.

Added Mr. Blier, “I’m quite sure there are a lot of gigs I just don’t get asked to do, because everything has to be arranged very carefully.”

Musicians spoke of strong support networks, from spouses to, in Mr. Perlman’s case, his parents, to artistic collaborators.

At the conclusion of that New York Festival of Song concert, for example, Mr. Blier’s fellow pianist, Mr. Barrett, didn’t stand up to bow in the usual fashion. Instead, the two singers and Mr. Barrett gathered around the seated Mr. Blier in a kind of a group hug.

Mr. Blier grinned from ear to ear.

U.S. Supreme Court justices to decide rights of mentally disabled people during arrests

From USA Today:

WASHINGTON — The Supreme Court will decide whether police need to take a person's mental disability into consideration when making arrests.

The justices agreed Tuesday to hear a case involving a decision by San Francisco police to use force against an armed, mentally ill woman resisting arrest.

The city appealed a ruling from the U.S. Court of Appeals for the 9th Circuit, which said the Americans with Disabilities Act required police to act less aggressively in an effort to defuse the situation. The city argued that officers must put safety considerations before disability accommodations.

Some other federal appeals courts have given law enforcement officials a wider berth in dealing with armed and violent individuals with disabilities. Recognizing a split among appeals courts, the justices agreed to hear the case next spring.

The case involved a woman with mental illness living in a community-based group home. Her social worker asked police to help detain her for further evaluation at a hospital after she threatened him with a knife. In forcibly arresting her, two police officers shot and wounded the woman rather than taking more time to try to talk her into complying.

"Police officers regularly encounter, and often detain, mentally ill individuals," the city's brief said. It cited a study that showed in medium- and large-sized police departments, 7% of all contacts with the public involved people with mental illnesses.

"When mental illness manifests in unpredictable, violent behavior as it did in this case, officers must make split-second decisions that protect the public and themselves from harm," the city said.

Lawyers for the woman, Teresa Sheehan, argued that police "failed to reasonably accommodate her disability when they forced their way back into her room without taking her mental illness into account and without employing tactics that would have been likely to resolve the situation without injury to her or others."

Theaters pledge to improve movie access for deaf, hearing-impaired people

From The LA Times:

The nation's theater owners have agreed to make their cinemas more accessible to deaf and hard-of-hearing patrons.

The National Assn. of Theatre Owners has reached an agreement with the the Alexander Graham Bell Assn. and other advocacy groups on a new set of recommendations to the Department of Justice, which is conducting a review of guidelines under the Americans with Disabilities Act.

Among other things, the recommendations would require all digital movie theaters nationwide to install closed-captioning and audio description equipment.  The agreement also establishes minimum closed-captioning device requirements and a system for tracking how many patrons use the equipment.

The agreement followed weeks of discussions and represents a compromise over an issue that has sparked clashes in the past.

Over the years, advocacy groups have sued theater chains, alleging they were not doing enough to make their theaters accessible to the deaf and hard-of-hearing community. For their part, theater owners have previously complained about the high costs of installing the equipment, which can range from $3,000 to nearly $40,000, depending on the size of the theater.

“These joint comments are the result of decades of efforts from A.G. Bell’s members and other deaf advocates to attain captioning access in movie theaters," said John F. Stanton, chairman of the public affairs council of A.G. Bell.  "Today is truly a landmark day in captioning access history."

Anna Gilmore Hall, executive director of the Hearing Loss Assn. of America, called it a historic agreement that is a “'Welcome Back' banner for people who had given up going to the movies simply because they could no longer hear.”

The Assn. of Late Deafened Adults and the National Assn. of the Deaf also were part of the agreement with the theater owners' trade group.

More than 38 million Americans live with some sort of hearing disability, and only one third of them go to a movie theater at least once a year. That compares with about 70% of Americans overall who went to the movies at least once in the last year, according to industry surveys.

The nation's largest theater chain, Regal Entertainment, has invested more than $10 million in glasses developed by Sony Electronics Inc. that use holographic technology to project closed-caption text that appears inside the lenses, synchronized with the dialogue on the screen.

“This partnership between deaf and hard-of-hearing advocates and the movie theater industry has been remarkably productive and promises to yield results that will benefit our patrons and expand access to movie theaters in a real, practical and measurable way,” said John Fithian, president of the National Assn. of Theatre Owners.

People with communication disabilities speak out about needed technology

From Public Source:

Her voice and hands sapped by ALS, Mount Lebanon resident Mara Sweterlitsch (pictured) uses a speech-generating device to write and print out questions for her next doctor’s appointment.

Jennifer Lowe, a 46-year-old Brighton Heights woman with cerebral palsy, handles email and phone calls through her communication device to work as an education consultant for students with disabilities.

Isolated in a public housing unit in the North Side of Pittsburgh and paralyzed by ALS, Vaughan Thomas hears about school from his two preteen kids by texting with them from his device. With his eyes, he selects each letter in notes delivered to his children, who live with their mothers.

“Texting, emails, social media, blogs, they make me feel like I'm part of the world,” said Thomas, 46.

For the better part of a year, people who have speech impairment or loss, feared that a sudden, and painfully literal, reinterpretation of Medicare policy would diminish their abilities to communicate. Their advocates and the makers of communications devices also worried about how the changes might affect them.

Since 2001, Medicare has paid for the basic communications device, which costs an average of about $6,000, and the beneficiary could pay for upgrades, like the Internet, phone or functions of a TV remote or thermostat.

Beginning in April, the Centers for Medicare and Medicaid Services (CMS) said beneficiaries could not get upgrades for the devices until after a 13-month rental period.

Then, the agency said that as of Dec. 1 they would no longer approve devices on which these functions were ever possible. In other words, even if the beneficiary wanted to pay for the add-ons, they couldn’t.

Medicare wouldn’t explain why they were doing this, not to PublicSource and not to about 200 lawmakers who sent a letter to CMS in September.

U.S. Rep. Tim Murphy, a Republican who represents parts of Southwestern Pennsylvania and is chairman of a subcommittee with public health oversight, sent a letter Nov. 4 demanding answers for what he called a “cruel and uncompassionate” act.

Two days later, Medicare backpedaled on the tough-guy approach it had taken for several months, calling for a 30-day public comment period as it considers updating the coverage policy to include beyond-speech technology. The comment period ends Dec. 6.

CMS expects to issue revisions to the policy in July.

While some are taking this as a good sign, Lewis Golinker, director at the Assistive Technology Law Center in Ithaca, N.Y., is not as trusting, and he says there are other concerns that are still not addressed, such as routine denials of eye-tracking technology.

“One can view this notice as an attempt by CMS to appear responsive to all the concerns expressed, but to take no action that has any substantive effect,” he said.

CMS’ move may actually extend the confusion. Some manufacturers began sending out devices with the add-ons blacked out months ago as the policy’s meaning was debated.

They didn’t want to give already vulnerable people a preview of what might be quickly taken away from them. Without a definitive answer from CMS, more people with speech loss could be denied opportunities to communicate like any other person.

Someone who already owns their device wouldn’t be affected unless the policy does ultimately change and they have to get it replaced.

‘A lifeline’

Many people with ALS (amyotrophic lateral sclerosis, more commonly known as Lou Gehrig's disease), cerebral palsy, traumatic brain injury, Parkinson’s disease, multiple sclerosis, aphasia and various neurological conditions rely on speech-generating devices.

Medicare has paid for 2,000 to 3,000 devices annually in the United States since it started covering them in 2001.

At that time, gaining the ability to have a face-to-face conversation was a godsend. Many of the technological innovations were available then, but not so ingrained in society as they are now.

Following the 2001 Medicare coverage policy literally would have effectively eliminated any glimmer of independence that many people had become accustomed to.

About 75 percent of people who use speech-generating devices from manufacturer Tobii Dynavox, which has a headquarters in Pittsburgh, unlock their devices. Tobii Dynavox president Tara Rudnicki equated taking away the extras to saying, “You are not important enough to engage in society.”

Andrew Jinks, a speech pathologist at the Center for Assistive Technology in Pittsburgh, said the ruling would force manufacturers to time warp the devices back to the 1980s. “It’s like having a smartphone and taking it back to two tin cans and a string,” he said.

Face-to-face conversation is often too difficult to arrange for these people when a child goes off to college, or when trying to coordinate care through several caregivers and support services. And forget ever having a private phone call; without phone functions on the device, someone else would have to start and end the phone call, and they must talk over the speakerphone.

“To them, it’s not a toy; it’s a lifeline and it’s not frivolous,” said Shelly DeButts, a spokeswoman for United Cerebral Palsy. “It’s difficult for people to understand how restrictive having a disability can be socially and economically.”

CMS hasn’t indicated that cutting these functions is designed to save money.

“[We] have yet to find out the rationale for the change to a policy which, for 13 years, had operated without known fraud and abuse,” said Amy Goldman, co-executive director of the Institute on Disabilities at Temple University.

The potential changes are also affecting the business of speech-generating devices. Tobii Dynavox, one of the largest manufacturers of communication devices in the country, would have to drop two device models that could not permanently lock extra functions.

“Which means a beneficiary does not have the opportunity to have the device that works best for their needs,” Rudnicki said.

Taking devices away

Medicare enacted another policy change in April, creating a 13-month rental period before the user owns the device. They used to become owners right away.

Doesn’t sound so bad, but that means the user can’t get email, text or other upgrades for 13 months. Valuable time for someone with any of these devastating conditions.

Another potential consequence has intimidated people who use communication devices: If the user is admitted to a hospital, nursing home, hospice or any other assisted living facility while it’s still a rental, the device will be taken away.

“Those are critical moments to express what kind of care they need,” said Marie Folino, director of care services at the ALS Association’s Western Pennsylvania Chapter.

Sweterlitsch, 47, said her device was crucial to communicate what she needed and what she was feeling during her last hospital stay. “When I was in the hospital, I needed to speak up about errors,” she said.

Medicare provides a fixed payment to facilities, and the facilities are expected to provide equipment during the person’s stay there.

However, a communication device is often customized to work especially well for that one person and it takes time to make the adjustments and for the user to learn to use it. Plus, many facilities don’t have the budgets to provide them.

They generally range from $5,000 to $12,000 retail. Medicare pays for the devices at a discounted rate.
CMS spokesman Aaron Albright said few people who use the devices are admitted into facilities. For example, he wrote in an email, only about 300 people who use speech-generating devices are admitted to skilled nursing facilities per year.

Bruce Baker, the founder of Minspeak, a language system used on many devices, said the rental structure has also put a financial strain on his Castle Shannon company, Semantic Compaction Systems. They’re used to being paid for the device outright, which allows them to make frequent technology upgrades. With the payments spread out, Baker said they’re having trouble keeping up with waves of new technology.
Baker is optimistic that an updated coverage policy will reverse that change.

“I just can’t believe the federal government would do something quite as negative,” he said. “I think reason will prevail.”

Eye tracking

Speech-generating devices are needed by people with multiple disabilities.

Some people, like Mara, use a head-controlled mouse. Others may be able to use their hands or even their toes.

And then there are people like Thomas, who is almost completely paralyzed. He can still smile, especially at any mention of his children, but otherwise, he mostly conveys his thoughts by darting his eyes at the appropriate letters or icons.

Eye-tracking technology is one of the most advanced and expensive ways of accessing the communication device.

Though Medicare hasn’t explicitly said it’s not covering eye tracking anymore, manufacturers and assistive technology experts say they’ve recognized a pattern of denials.

In fact, Tobii Dynavox, a leader in eye-tracking technology, has taken at least a $1.6 million hit in the last 14 months because it has not been reimbursed by Medicare for the eye-tracking technology it has provided to beneficiaries, Rudnicki said. “You can certainly see how much we have put in and how much we don’t want the beneficiary to suffer.”

It’s unclear why it’s being denied. Again, CMS wouldn’t say.

But manufacturers have heard the technology has caused CMS to bristle because it is becoming a hot item in commercial products and anyone can use it, so they might wonder if people who don’t need it are jumping to ‘the cadillac’ when they could still be using a head mouse or another cheaper option.

Thomas doesn't see it as a luxury — it bridges the divide between his mind and body.

“It allows me to keep my mind sharp and active instead of dwelling on this disease and sinking into a deep depression.”

Contest seeks developers to create transit apps aimed at New Yorkers with disabilities

From NY1:

Like any New Yorker, Quemuel Arroyo knows the ins, the outs, the ups and the downs of mass transit. He rides the subway, after all.

"My MetroCard is the closest I'll get to a driver's license," Arroyo said.

As a rider with a disability, moving around requires more than a little effort to navigate an old system where fewer than one-quarter of the 468 stations are fully accessible.

"Every day, I have to map a route and cross-reference that route with the New York City Transit website to make sure that those elevators are hopefully working," Arroyo said.

So on Wednesday, he joined officials from the MTA, AT&T and Transit Wireless to announce App Quest 3.0, a contest that invites developers to mine the authority's data to create apps for commuters.

"This technology has the potential to revolutionize the way that people use our system, from tourists trying to find their way to people with disabilities to lifelong New Yorkers who want to be in the subway car closest to the exit they use every day," said MTA Chairman Thomas Prendergast.

The contest offers $50,000 in prize money from AT&T, and for the first time, one of the prizes is a $10,000 payout for creating the best accessibility app for commuters with disabilities.

"Developers can come up with helpful ways for disabled communities to find the entrances and exits more easily, to understand where elevators are and where they're not, to understand when you get off a subway, which way to turn to find the nearest exit," said Marissa Shorenstein, president of AT&T New York.

Arroyo said having real-time information in a system where more stations are getting wireless reception would be a huge boon for the 850,000 New Yorkers with disabilities.

"The main challenge is elevators and escalators, knowing when they're out of service and knowing where they are," he said.

The challenge, in turn, for the tech-savvy set is to convert data about the subway system into easy-to-use apps that fit in your hand.

App developers have until February 3 at 5 p.m. to submit their apps for consideration in the contest. Winners are set to be announced in mid-March.

Comcast launches ‘Talking Guide’ for blind people

From Lost Remote:

Comcast announced a new feature to help the blind and visually impaired better watch television and use the Comcast X1 platform.

The “talking guide” will be released over the next few weeks to Comcast customers. Customers don’t have to download anything or buy new hardware; the feature is available just by tapping the A button twice on the remote control. The “talking guide” is a female voice that reads the guide, with program names, networks, and time slots, as well as On Demand and DVR information. It will also read program information and ratings that Comcast features from Rotten Tomatoes and Common Sense Media. They plan to have search functionality included in future versions of the talking guide.

Comcast hired a Vice President of Audience in 2012, Tom Wlodkowski , to specifically focus on increasing usability for people with disabilities. According to Comcast and the United States Census, about 19 million household include a person with a disability, 8.1 million of those with a visual impairment. Cable companies and Smart TVs are a good place to start innovating for them.

Wlodkowski said in a statement: "The talking guide is as much about usability as it is about accessibility. We think about accessibility from the design of a product all the way through production and this feature is the result of years of work by our team including customer research, focus groups and industry partnerships. For people like me who are blind, this new interface opens up a whole new world of options for watching TV."

You can see how the guide works in this video: https://www.youtube.com/watch?v=Kky3i1MxxAY

For Russian kids, disability often means life in an orphanage

From NPR. (Note: Vladimir Putin banned Americans from adopting Russian children in 2012, which could mean the early death of disabled children in Russian orphanages.)

Dasha Daunis (pictured) is a lively 15-year-old who loves animals. She talks with her mother, Anastasia, about a recent trip to the circus, where they saw her favorite, bears.

Dasha was born with Down syndrome, and Anastasia says the doctors at the hospital told her that her baby would never thrive.

"Everyone was saying, the most reasonable decision is to abandon the child, because it's a cross you'll have to bear all your life," she recalls. "This child will never even understand that you are its father and mother. And your friends and your family will turn away from you."

Anastasia says she couldn't bear to leave her child behind, and after more than a year, she brought Dasha home from the orphanage. She never regretted her decision.

Instead, she thinks the doctors who advised her were in need of help and better information themselves.

But this Russian habit of placing disabled children in orphanages has changed little over the years, according to a new report highlighting problems with Russia's treatment of disabled kids.

Human Rights Watch, the U.S.-based group, says that nearly 30 percent of Russian children with disabilities live in state orphanages.

"We do believe that people are still being advised to institutionalize their children," says Andrea Mazzarino, a researcher at Human Rights Watch, which recently released its report. "We spoke with several parents who heard that advice within the past two years in Moscow alone."

Instances Of Poor Treatment

Mazzarino says that once disabled children are consigned to state orphanages, there's little chance that they'll be given the attention needed to thrive. In many cases, she says, they face ill treatment.

"We visited 10 institutions across Russia, and in the vast majority, we either heard about, or we witnessed firsthand, severe forms of violence and neglect," she says, including children being tied up and sedated, or beaten, or doused with cold water.

She says children with severe disabilities are confined to so-called "lying down" rooms, where they spend their days in cribs, kept in diapers and fed through tubes. Photos from her report show teenagers with the physical development of preschoolers after years of confinement.

Even in the most developed countries, advocates struggle to obtain civil rights and humane treatment for disabled people, but Russia seems to be moving slower than most.

Andrei Dombrovsky, an activist for the rights of disabled people, thinks the problem dates back to the Soviet period, when the official ideology called for the creation of an ideal society.

"The country was striving toward something very perfect, in which you cannot see disabled person, because he is not perfect," says Dombrovsky, who is based in St. Petersburg. "And that's why all disabled people were living in the institutions."

He volunteers to help young adults make the transition from institutions to life on their own.

From A Children's Institution To An Adult Institution

For most disabled children who grow up in Russian orphanages, the only transition they'll make is to another institution that takes them when they're 18, such as the adult facility outside St. Petersburg.

It's a sprawling labyrinth of hallways with locked wards. Some residents, mostly very old, doze in chairs, or make their way slowly down the halls.

With her pink hair and punky clothes, 18-year-old Anya is a whirlwind of energy in this place, when she's let out of the women's ward to meet visitors. But Anya has virtually no education, and limited prospects for getting out of the institution.

Evgenia Shtil is the founder of a charity called Children of Pavlovsk, which helps young people who have aged out of one of Russia's biggest orphanages.

Russian law actually calls for the state to provide apartments for disabled people who are capable of living on their own. The catch, Shtil says, is that applicants have to prove to a panel of experts that they're ready for life in the community.

"It's really hard for a person like that to prove to the panel that they're able to cope with everyday life," Shtil says. "The only reason for that is that for the first 18 years of their lives, nothing was done to help them achieve that goal."

Russia says it's taking some steps to address these issues and help children in institutions to move into the community. The government has an "action strategy" that it says will bring Russia into compliance with the international Convention on the Rights of the Child.

Advocates like Shtil and Dombrovsky are working to help rescue the young people who are products of Russia's orphanages for disabled children. But they say, and human rights groups agree, that Russia's reforms will need to address the entire lives of disabled children, from the moment a they are born.

For month of November, Comcast is including 10 films from The Arc & Sprout Film Festival/Sproutflix free On Demand for all Comcast/Xfinity subscribers

From the Sprout Film Festival. Pictured is "The Girl With the Tuba," in which a young autistic woman details how playing a tuba in the streets of Atlanta has helped her define her voice as an activist.

We are very excited about a new partnership between Comcast and The Arc & Sprout Film Festival.

For the month of November Comcast is including 10 films from The Arc & Sprout Film Festival/Sproutflix free On Demand for all Comcast/Xfinity subscribers.

Two of the films: One Question and Sheri and Paul were made by Anthony Di Salvo through Sprout’s Make-A-Movie Program.

For Online – the films can be viewed at: http://xfinitytv.comcast.net/watch/Sprout-Film-Festival/8164424342502163112/full-episodes#episode=8164424342502163112

For Television - go to On Demand, click into the Specials folder and then click into the folder labeled Disability Awareness. At the top of that page click on the folder labeled Sprout Film Festival.

This is a wonderful opportunity to create awareness with the general public about people with intellectual and developmental disabilities.

Film is a valuable tool to entertain, educate and enlighten. Please help by watching the films.

Work of outsider artist Judith Scott sheds beautiful light on living with disabilities

From The AP:

NEW YORK — Institutionalized for more than three decades and largely deaf and mute, Judith Scott found her voice through art, forming intricate sculptures of yarn, fabric and other fibers tightly wrapped around an array of found objects.

Born with Down syndrome, the late artist is getting her first solo museum exhibition in the United States. "Bound and Unbound" opens Friday at the Brooklyn Museum featuring 60 of her cocoon-like works.
But the honor would not have fazed Scott, who died in 2005 at 61. It was the creative process — not accolades — that engaged her.

Scott was single-minded about her work. As soon as she finished a piece she pushed it away to signal she was done and immediately moved on to her next project. Found or salvaged objects, everything from fans to shopping carts, gave shape to her wrapping and weaving technique.

Born in Cincinnati, Scott was largely isolated for 35 years until her sister, Joyce, became her legal guardian and introduced her to the Creative Growth Art Center in Oakland, California, in 1987. While Scott had shown no artistic aptitude, Joyce Scott felt the facility for adults with developmental and mental disabilities would be a nurturing place for her.

It took nearly two years for Scott to begin expressing herself artistically, after a teacher brought some textiles to class and Scott picked up some sticks and began wrapping them. From then on, she was given free rein to select her materials. Gradually, her brightly-colored pieces got more complex. Some got quite large including a fiber-encased shopping cart, one of the few pieces where the object is not disguised.

"Her work had nothing to do with art therapy," said Frank Maresca, whose Chelsea gallery champions self-taught artists. "She was born with a gift of creativity" that's about form, color and process — "all the things that contemporary and modern artists are about."

Even though her work has been shown in other museums and art galleries and several major museums own some of her pieces, he said she remains largely unknown to the general public.

Maresca said he was bowled over by her creativity the minute he met her some 20 years ago and immediately decided to showcase her work at his Ricco Maresca Gallery.

"My sister was considered worthless and effectively cast aside for 35 years by society," said Joyce Scott. "It is a tribute to her inner resilience that once given the opportunity she was embraced as an artist of outstanding ability and originality."

But she said Judith Scott couldn't have realized her potential without Creative Growth.

"Judith's life and work really follows the change in disability culture and the arts that we have seen in the past few decades," said its director, Tom di Maria. "For Judith to go from an institution to the highest level of cultural achievement "is a testament to how far we have come."

Co-curators Matthew Higgs and Catherine Morris said the exhibition's goal was to build on the work Scott created for nearly 20 years.

"It's a larger narrative around the question of the relationship between creativity and disability," Higgs said.
The exhibition runs through March 29.

Aussie girl group with disabilities, The Sisters of Invention, on their way to being YouTube sensation

From The Daily Mail in Australia:

A gutsy girl group with a difference have unveiled their first music video which aims to challenge the way intellectually disabled people are often treated like ‘little kids’.

The five stars of The Sisters Of Invention all have learning disabilities, ranging from Foetal Alcohol Spectrum Disorder, Cerebral Palsy, blindness, a mild intellectual disability and Williams Syndrome.

They also all have fantastic voices – with Annika, who is blind, possessing pitch-perfectness, a skill envied by musicians around the world and singer Aimee’s Williams Syndrome working in her favour, with hyper-musicality an attribute of her disability.

In their first professionally produced release called This Isn’t Disneyland, Aimee, 28, is dressed as Snow White, Annika, 28, is Cinderella, Caroline, 29, is Tinkerbell, Jackie, 25, is Pocahontas and Michelle, 24, is Rapunzel – but it is no fairy-tale dress up competition, they are making a clever point.

In the catchy electro-pop tune the Adelaide-based band sing: 'This isn't Disneyland I'm not a novelty this is a real as it gets.' 

‘Sometimes people treat us like we are little kids. We wanted to say we are not; we are more than disabled people. The video goes to show we are not novelties,’ Aimee told Daily Mail Australia.

‘We are here to change opinions of disabled people in general,’ she added.

The band’s producer Michael Ross, who worked with the five women to write the songs on their upcoming album, said people have been surprised by the video.

‘When people think about a girl group with learning disabilities they paint a picture in their mind straight away.

‘But when they watch it they see it is not “second class”, they see it’s not “s**t” and they are surprised and they are like “oh my god I actually like this.”, he explained.

‘We want people to really like it and get something out of it.’

Michael has been working with the band for four years, to get them to the point where their natural musical talents have created broadcast standard records.

The Sisters Of Invention describe their music as alternative pop and they write all of their songs from personal experience – both the happy and the heartbreaking.

One of the brave stories of how they wrote their songs comes from Jackie, who has Foetal Alcohol Spectrum Disorder.

During the writing of their tenth song, she came into the studio with the heartbreaking news that her cousin who was ‘as close as a sister to her’ had committed suicide. She was just 14-years-old.

‘Heidi had lived with us since she was a baby and committed suicide. We weren’t expecting it. So we wrote a song about Heidi, it’s called Tsunami Of Kites,’ Jackie said.

‘For a singer-songwriter to sit down and be brave enough to use that story and that experience in a song is incredible.

‘To put your ultimate truth and honesty directly in to those lyrics, there is nothing childish about it,’ Michael explained.

Meanwhile, Annika used the time when her school principal told her parents she would never be able to learn anything as the basis of another song. 

Michael said when people talk about intellectual disability they start saying words like ‘retard’ and ‘infantile’.

‘They think that you will forever be a child. So for these girls to actually be singing gutsy, blatantly honest, emotionally mature songs and to sign them so beautifully that in itself is enough to make people go “oh”.’

He hopes that next time people talk to someone with a learning disability they instead think ‘I have no idea what your are capable of, you might be able to do something just as amazing as The Sisters Of Invention’.

‘Here are five women who actually have a career as singer song-writers,’ he added.

The women have all been singing separately for years but got together as a group three years ago and named their band The Sisters of Invention ‘because we are all sisters and support each other and that’s what friends do,’ Aimee explained.

Annika added: ‘We are reinventing the rules of how people see us and so people can see us for what we are capable of instead of what we are not.’

The Sisters of Invention are from an Adelaide-based arts organisation called TUTTI, which gave them a chance to develop themselves professionally. Follow The Sisters Of Invention on Facebook and download their first single on iTunes.  

How tech advances are helping innovators develop more accessibility tools for people with disabilities

From GeekWire:

Inside a small office on the sixth floor of the University of Washington’s computer science building, Richard Ladner starts talking about Google’s self-driving cars (pictued). The longtime professor is so excited about the innovation that he lets out a big laugh.

But Ladner isn’t joking around — rather, he’s jazzed up about a better future for people with disabilities.

“This is an accessibility tool,” Ladner explains. “Can you imagine a blind person taking their cane, walking to the car, telling it where to go, and it goes there? I think that’s going to happen.”

Using technology to help people with disabilities isn’t a new phenomenon, from the advent of speech recognition systems, to hearing aids, to power wheelchairs — the list goes on and on.

But Ladner and his colleagues say there’s been a recent increase in attention to the assistive technology, which is encouraging, because they also think that there’s much more that can be done.

“There is a lot of room for this space to grow,” said Ladner, who’s dedicated more than a decade of his life to accessibility research.

That’s the same sentiment shared by Jenny Lay-Flurrie, a senior director at Microsoft who leads a team that focuses on accessibility, privacy, and online safety. Last week, Lay-Flurrie was in Washington D.C. where she was among ten people from around the nation who were honored as the 2014 “Champions of Change” — people helping to make workplaces more accessible and creating job opportunities for people with disabilities.

“Is there more technology can do? Yes — and that’s what is so exciting about being in the tech industry,” she told GeekWire. “The sky really is the limit.”

Ladner and Lay-Flurrie represent two pillars when it comes to the creation and implementation of accessible technology, from research at places like the UW, to the products built by companies like Microsoft.

But Ladner, who grew up with deaf parents, noted that these innovations haven’t always been of great importance for researchers and companies. For example, Ladner explained that though the first iPhone was a massive advancement for most of us, it left out people with disabilities — particularly those with vision impairments who had relied on physical mobile phone keyboards and were all of a sudden left with a flat touchscreen.

But a couple years after the first iPhone release, Apple decided to get serious about making the iPhone accessible. The company developed voice-enabled tools and other innovations that made the device more usable by people with disabilities.

“It was a company commitment to accessibility,” Ladner said. “That was a turning point, I think. No company had ever done that before.”

Today, most of the big tech companies — from Google to Yahoo — have teams dedicated to building out technology that is accessible to everyone. Lay-Flurrie, who is deaf, leads the Trusted Experience Team (TExT) at Microsoft that focuses on accessibility, while she also chairs the Microsoft Disability Employee Resource Group.

This past July, the winning team of a company-wide hackathon at Microsoft was the “Ability Eye Gaze” group, which leveraged technologies including Microsoft Kinect and Surface to create a series of new features to make it easier for people with ALS and other disabilities to control a tablet with their eyes.

That team worked on the project with Steve Gleason, the former NFL player who has ALS, who also appeared in Microsoft’s first Super Bowl commercial earlier this year. 

Lay-Flurrie said she’s spent a lot of time with Gleason recently and recited a phrase from him when asked about the power of technology helping people with disabilities.

“One of the things he says a lot is, ‘until there is a cure for ALS, technology is a cure,'” Lay-Flurrie said. “It really brings home the power of technology.”

So what more can be done? For starters, Ladner said there needs to be more people with disabilities pursing careers as coders, engineers, and designers — people who know exactly what a disabled person may need in a product.

“They will understand the value of what they are doing,” said Ladner, whose research includes MobileASL and the Tactile Graphics Project. “They will see the nuances.”

 If you empower people to be successful, they will bring that perspective to work and use it to create great products.

 

For that to happen, Lay-Flurrie said more awareness about disability employment is needed. Companies need to have a strong understanding and approach to hiring people with disabilities, she said.

“That means creating a safe environment where people can self-identify and be honest about their disability and what they need to be successful,” Lay-Flurrie explained. “Then empowering and encouraging them to do more, be more and bring ‘all’ of themselves to work every day. If you empower people to be successful, they will bring that perspective to work and use it to create great products.”

Ladner also noted that more and more researchers are starting to ask disability-related questions when the latest gadgets come out. How would a blind person use Google Glass? How might a deaf person interact with a virtual assistant like Apple’s Siri or Microsoft’s Cortana?

And with the aging baby boomer generation, Ladner said there’s a huge market to tap into for companies — in fact, there are more than 1.2 billion people with some type of disability today.

“I feel like there will be a huge surge in interest for this kind of research just because there’s more customers,” Ladner said.

It’s also important to keep in mind that some of these accessibility innovations actually end up benefitting the entire population. Lay-Flurrie recalled how technologies like talking books or even door handles were at first created for people with disabilities.

“Some of the best products have been designed with disability in mind,” Lay-Flurrie said.

When asked what she’d like to see happen over the next decade in the disability field as it relates to technology, Lay-Flurrie brought up Star Trek. She grew up watching the show and seeing Geordi La Forge — a blind character — use technology to get a leg up on his peers.

“His visor basically gave him the ability to see more than anyone else on the crew — imagine that,” she said. “That’s got to be the goal of technology. Disability is a strength — believe that, and the rest will follow.”