Sunday, January 25, 2015

iPad app brings Braille keyboard to blind users’ fingertips

From Wired magazine:

The proliferation of touchscreen technology may have revolutionized mobile computer input for most everyone, but there’s one sector of the population that isn’t exactly feeling the pinch, the tap, or the swipe: the blind. It’s nearly impossible to interact with elements on a totally smooth screen if you can’t see.
iBrailler Notes, which began as a summer project at Stanford University in 2011 and is now available as a stand-alone app for iOS, aims to offer blind and vision-impaired iPad users an easy way to type Braille notes and perform basic word processing on a touchscreen.

iBrailler isn’t the first to undertake this commercially. There are a variety of apps designed for the sight-handicapped, ranging from camera applications that describe the content of an image aurally to other Braille-reading and writing apps. Add to these the numerous accessibility features Apple offers on iOS, most notably VoiceOver, which reads text aloud to sight-impaired users, and its Braille QWERTY keyboard.
What iBrailler does differently is position its touch keyboard underneath the user’s fingertips, no matter where they set them on the iPad’s slick glass display. Every time you lift and readjust your hands on the screen, the keyboard does too. The keyboard uses Braille English Grade 1, Grade 2, and Six-Dot Computer Braille, and features built-in gestures for tasks like cutting, copying, and pasting text.

More than 6.6 million Americans over the age of 16 are visually impaired, according to estimates by The National Federation of the Blind. Much of that number are able to use computers thanks to the tactile feedback of a keyboard, optionally with raised Braille lettering on top, or a refreshing Braille display.
But a refreshing Braille display can be very expensive—thousands of dollars per unit, according to Ed Summers, a blind computer scientist with business analytics software firm SAS. A Braille keyboard is very different from a QWERTY keyboard, he tells me: eight keys, one for each dot that can compose a Braille letter, and a “display,” a strip of 18 to 80 Braille cells, each housing eight tiny pins that raise to form a letter. Using this, a blind person can type on an iPad (or computer screen), moving the cursor around, reading text, correcting spelling. A small, 18-cell Braille keyboard can run around $1,800, while larger ones can cost in the realm of $6,000.

Sohan Dharmarajah, one of iBrailler Notes’ creators, wanted to offer the benefits of such a keyboard at a more affordable price. This iOS app is a free download from the App Store, and users can subscribe for a small monthly fee if they like the experience and want additional features.

Summers thinks that an app like this could be incredibly useful, particularly for students (he works with teachers of blind students in addition to his science work). Historically, he says, visually impaired students have had to use tools that make them stick out like a sore thumb in class.

“Now they can use an iPad and they’re the cool kid,” he says. “They have the coolest technology in the classroom.” Summers also notes that this keyboard app could allow blind users to type incredibly quickly.
The app’s creators aren’t entirely sure how big the Braille iPad-user market is—certainly a growing number are used in education, and since the iPad was completely accessible to the blind from the get-go thanks to VoiceOver, Apple fans of any sight ability have been able to use it just fine. But actually typing out thoughts with your fingers, rather than dictating with your voice, was still prohibitive.

Dharmarajah says feedback for iBrailler Notes thus far has been overwhelmingly positive; the app is being used actively at several blind schools and institutes in the United States and in Sri Lanka. An Android version is also in the works and should be available soon.

Thursday, January 22, 2015

New movie filming in Georgia features autistic actors

From 11 Live in Georgia:

DECATUR, Ga. -- It's time for another take in another movie in a city that's quickly becoming a movie-making capitol.

And while this particular movie has all the stuff we associate with movies, the differences outweigh the similarities.

In the film, titled Circles, main character Ollie has autism. In real life, so does the actor who plays Ollie, 16-year-old Sam Seidel (pictured).

"This is my first real experience with it," Seidel said. "Yesterday was 11 hours. It was pretty tiring, but I still enjoy doing it."

Seidel was among more than 100 teens with autism who auditioned for the movie. Almost all the actors in the cast have autism.

"It was really important to me. It was something I wasn't willing to budge on," said director Jesse Cramer.
Cramer has acted and worked with kids with autism for years. He thought the two could blend beautifully, with cinematic success.

"I think it brings a level of authenticity that is unmatched," Cramer said. "They have a point of view that is so valuable. That makes an indelible difference in the final product."
It's a first for many, including members of the film crew flown in from Los Angeles.

"The entire crew keeps coming up to me and saying these actors are the best actors (they) ever worked with because they want to be here so badly," Cramer said.

In the movie, Ollie's best friend at school is moving away, and he has troubling expressing his feelings. He appears indifferent.

"He is unbelievably natural in front of the camera," Cramer said of Seidel. "He's dynamic. He has these huge pensive eyes, and he thinks about every scene, the subtext of every scene."

Through the movie, we learn that just because we can't see how someone feels, doesn't mean they don't feel.
"This character has emotions that run just as deep as anyone else, and he's fighting to tell the world what those are," Cramer said.

It's a simple message -- important to the boy behind the actor, who lives this every day: "That people with autism have feelings too."

But when asked about his favorite part of the movie making experience, he quickly said, "The food!"
And that's when he became just another hungry teenage boy.

"If this movie never airs, at least I had good food," he said.

Thursday, January 15, 2015

Blindness simulations can harm people's attitudes toward blindness, University of Colorado-Boulder research finds

from Medical Xpress:

Using simulation to walk in the shoes of a person who is blind—such as wearing a blindfold while performing everyday tasks—has negative effects on people's perceptions of the visually impaired, according to a University of Colorado Boulder study.

"When people think about what it would be like to be blind, they take from their own brief and relatively superficial experience and imagine it would be really, really terrible and that they wouldn't be able to function well," said Arielle Silverman, who is lead author of the paper and blind. She conducted the research as part of her doctoral dissertation in CU-Boulder's Department of Psychology and Neuroscience and now is a postdoctoral researcher at the University of Washington in Seattle.

In one part of the study, after simulating by having their eyes covered, participants believed people who are blind are less capable of work and independent living than did participants who simulated other impairments like amputation, or had no impairment.

In another part of the study, participants who were blindfolded said they would be less capable if they personally became blind and slower to adjust to their new world compared with who weren't blindfolded.

The findings, published online in Social Psychological and Personality Science, demonstrate the self-centered nature with which people reflect on other's difficulties.

The findings also show that blindness simulations—typically meant to be bridge-builders resulting in compassion and understanding—can sometimes harm rather than help attitudes.

Silverman became interested in studying the effects of blindness simulations in part because of her own interactions with strangers enthusiastically wanting to help her navigate her way across a street, for example.
"I noticed and wondered why people who've never met a blind person before seem to intuitively have good attitudes toward and people who tell me they have interacted with a before tend to seem more condescending," she said.

Blindness simulations are often used to train teachers and professionals in other fields who are preparing to work with people with visual impairments.

There also are variations on blindness simulations—activities that are implemented with good intentions but that can exploit blindness, said Silverman. These include trust walks—typically used as a group bonding exercise—and blind cafes, where diners are blindfolded and dine in the dark.

More than 100 undergraduate CU-Boulder students participated in the study, some of whom were blindfolded and performed tasks like walking across a room or down a hallway; figuring out that a water pitcher they were given had a closed spout, opening it and then filling a glass as full as possible without overflowing; and sorting coins into groups of common denominations.

Afterward, all of the participants, some of whom were not blindfolded or had different impairments, completed questionnaires asking about their competency perceptions of blind people as well as themselves if they were to become blind.

Jason Gwinn, also a CU-Boulder doctoral student in psychology at the time of the study, and Leaf Van Boven, professor of psychology at CU-Boulder, co-authored the paper.

A blindness that might improve people's attitudes would go further than the typical activity and teach people good strategies for adapting to blindness, said Silverman. Developing friendships with people with disabilities and in other underrepresented groups, perhaps through team-building exercises, also is a good strategy, she said.

Another important consideration when it comes to evaluating the effectiveness of simulations is the fact that the built world and social environments are not designed for people with disabilities.

"A lot of the disability that I experience has nothing to do with not being able to see," said Silverman. "Instead, it's because I can't access something like a poorly designed website, for example.

"So if there's a way for simulations to capture how much difficulty is caused by the social environment and the built world, this could improve attitudes and help people understand that those with disabilities are just as competent as they are."

Thursday, January 8, 2015

Outcasting: Inside TV's revolution for transgender actors, disabled actors

From Rolling Stone magazine. Pictured are trans actor Erika Ervin and disabled actor Mat Fraser on "American Horror Story."

The most shocking, and remarkable, thing about today's television landscape is that nothing's shocking. Cable networks and streaming services have helped forge an era of unprecedented inclusion and representation in both content and casting. We turn on HBO and root for dwarf hero Tyrion as he topples bad guys on HBO's Game of Thrones, swoon while phocomelia-afflicted Paul stirs romantic intrigue on FX's American Horror Story: Freak Show, and tear up along with transgender inmate Sophia on Netflix's Orange Is the New Black. These characters aren't on screen to be mocked, gawked at or kicked around — at least not without a fight. But what makes them truly groundbreaking is that all three protagonists are portrayed by actors — Peter Dinklage, Mat Fraser and Laverne Cox, respectively — whose physicality mirrors that of their alter egos.

Without casually equating transgender performers and those with congenital disorders, these groups do share something in common (outside of vocal activist arms): Collectively, they're among the last segment of our society who haven't naturally integrated into mainstream pop culture, even after tremendous strides in less stereotypical storytelling. But thanks in part to providers who are willing to push the envelope through more equal-opportunity casting – call it "outcasting" – these individuals may finally have a place at the small-screen table that transcends narrow perceptions of gender identity or physical limitations.

"I would hope that this is that sea-change moment," says Adam Moore, national director of equal employment opportunities and diversity for Screen Actors Guild – American Federation of Television and Radio Artists (SAG – AFTRA). "There are positive signs that indicate that [if] we let this thing play out over the next several years, it will prove to be a turning point."

Statistically speaking, it's becomes more complicated for SAG-AFTRA or media-watchdog organizations like GLAAD to keep pace with shifting trends as the very notion of what constitutes television grows harder to define. But the blurring of that definition is one of the very reasons progress is being made. "There are so many more platforms for people to tell stories on now," adds OITNB casting director Jennifer Euston. "So you're not just dealing with the networks. That increases the need for stories, and that means opportunities for people who were considered marginalized. We have so much more creative freedom."

The Merits of Meritocracy
It's hard to forecast what, exactly, the widespread impact will be seeing American Horror Story's Fraser evoke pathos, or in following the protagonist of Amazon's critically acclaimed Transparent, a drama about a middle-aged man transitioning into his real self — "Maura" — and dealing with a largely cisgender (i.e. those whose "self-identity conforms with the gender that corresponds to their biological sex," according to the Oxford Dictionary) family.

And it could be an entire generational cycle of influence before actors born with dwarfism achieve Dinklage's level of uncompromised success, let alone get fair consideration for roles they both naturally embody and can otherwise slip into. Playing such characters is, after all, what essentially typifies acting, although being considered for them has largely been a privilege afforded to able-bodied and cis performers.

"There are films where they take average-size actors and make them smaller," notes actor/comedian/activist Danny Woodburn, who was born with dwarfism and is best known to audiences as Kramer's adversarial friend Mickey on Seinfeld. "On the other hand, would they ever consider making me a six-foot character using special effects? I don't know that that would ever happen. So why is the reverse of that OK?"

For many in Hollywood, the answer is that they're doing their best to make casting a pure meritocracy, where the actor most capable of conveying a character's story gets the job, without discrimination or overly conscientious inclusion. "I think that it's fantastic that I was able to cast Laverne [Cox] and that we went very real with that," offers Euston. "But just because she's a transgender actor doesn't mean she got the role. She still had to be able to act. The same with [Transparent's] Jeffrey Tambor: He's not transgender, but he gives the most beautiful performance as Maura."

Some, like AHS's Fraser, take a harder line, viewing the casting of, say, an able-bodied person in a disabled role as tantamount to blackface. "Finding a two-headed actor is pretty difficult, we'll all agree on that," Fraser concedes. But he suggests, as a case study, casting a character who's "a 30-year-old, heterosexual, wheelchair-using Caucasian woman who works in a cupcake shop in Manhattan. Now, there are going to be at least 15 available [disabled] actresses, and they may not have as much experience as the non-disabled actresses. I get that. But I'm sorry: You have to choose one of those 15. The end. There's just no excuse anymore."

Transparent creator/executive producer Jill Soloway, who hired transgender cast members, consultants and crew in addition to Tambor, is also unsure meritocracy "can be trusted." Her skepticism, however, has less to do with how decision makers level the playing field than a more deeply embedded big-picture patriarchy. "Who is saying 'best'?" Soloway asks of the casting process. "It's probably a straight, white guy. We do all these in-house, DIY transformative action things [on Transparent] that are not only leveling the playing field for trans people, but radically welcoming them into every aspect of the show, understanding the civil rights movement and trying to go way beyond, 'We're willing to see transgender people for the role.'"
Representation vs. Exploitation
All of this begs the question: Are characters like OITNB's Sophia and Game of Thrones' Tyrion a true sign of sweeping mainstream normalization, or merely a small but significant step toward television mirroring societal tolerance? To be more pointed, are actors with congenital disorders playing carnies in a miniseries dubbed Freak Show still inherently being exploited?

"As someone who is an advocate for disabled issues, I find it sort of a yin and yang," says Woodburn when asked about the latest AHS installment. "I'm awed by the fact that we have employment of several people with disabilities on a show such as this, but I'm also torn with some of the perceptions. You have a ghost character [played by Wes Bentley], who was supposed to be the moral compass, say, 'I never cared for dwarves. They're power mad, the lot of them.'…. It struck a nerve with me. It felt derogatory."

Woodburn's reaction to what may have scanned for most as a throwaway gag underscores the challenge for writers and producers looking to simultaneously entertain and educate: One flip bit of dialogue can undo much of the good accomplished in simply casting atypical leads. After all, we're not terribly far removed from a time when, say, most transgender people on TV were portrayed as victims and/or prostitutes.

"It's incredibly important to depict these individuals in a way that's more representative of how things really are," offers Charles Joughin, national press secretary for the Human Rights Campaign (HRC). "When you have characters who are either trans actors playing trans characters or cisgender actors playing trans characters, the focus tends be on the fact that they are trans — and not any other aspects of their identity."

Movie producer/director Jenni Gold, who has muscular dystrophy, recently wrapped a documentary titled CinemAbility, which features interviews with everyone from Ben Affleck to Breaking Bad creator Vince Gilligan and explores Hollywood's past and present relationship to persons with disabilities (PWDs). She shares a bit of Woodburn's hopeful hesitancy and Joughlin's cautious optimism while contemplating a possible-game changer like American Horror Story's current season.
"Obviously, Freak Show is a titillating title and it's about showing something that's unusual," she says. "But the way in which it's handled can be very proactive and positive. If it was written [like] a freak show — pay your dollar and watch this to say, 'Oh, this is weird' — then that's a disservice. If they write stories that show how everyone is ultimately a human being with the same desires, needs and relationships, then it can be very powerful."

The irony of playing a humane freak isn't lost on Fraser, but he feels that "what [AHS showrunner] Ryan Murphy has done is fantastic. I'm sure lots of people have lots of criticisms, but he's the only person who stopped talking about it and actually gave us work. He's not an angel. He's just a really sensible, clever employer." And for those who "would like an icon of exploitation of disabled people on TV," Fraser says he'll "happily replace [Murphy] with Jerry Lewis."
Reality Check
The most telling indicator of our readiness for acceptance may come less from fictional work than television's most polarizing platform: reality programming. TLC's Little People, Big World has chronicled the Roloff family, three of whom were born with dwarfism, since 2006. And while the show has drawn praise from PWD advocates, its network muddies much of that good intent with a prevailingly exploitive roster of franchises including My 600-lb Life and the recently canceled Here Comes Honey Boo Boo.

On the flipside, there have been few transgender sightings in the genre outside of Real World: Brooklyn cast member Katelynn Cusanelli in 2009, but that ratio is about to get shaken. The Tyra Banks-produced docuseries TransAmerica, featuring trans model/actress Carmen Carrera, is slated to air in early 2015. Ditto for Discovery Life's New Girls on the Block, which premieres on April 2nd and follows the journeys of four couples, in which at least one partner is trans. That includes Macy and Sharon, a black couple living in Kansas City, Kansas, who've remained together through Macy's transition to female, enduring their own adjustment period in addition to battling workplace discrimination (Macy has lost her job since starting her transition).

"If you look at the history of how transgender people are portrayed in the media, this gives us a chance to realistically portray transgender people," explains Macy. "Hopefully, folks will see a little bit of themselves in us, whether they're trans or not."

Given reality's reputation for the sensational, there are bound to be skeptics about how New Girls on the Block or TransAmerica can overcome the base tendency toward ratings, but Transparent creator Soloway – who hasn't seen either series  – feels that "it's possible" they can capture America's imagination in a responsible way. "The ideal would be that the reality show was produced, written and directed by trans people," she says, "because the other-izing thing happens so naturally."

While neither Tyra Banks nor New Girls on the Block creators are transgender, NGOTB's co-executive producer Caroline Gibbs does head up the Kansas City, Missouri-based Transgender Institute, which provides therapy and coaching to the trans population. She insists that telling Macy and Sharon's stories this way "is critical, because it's the only medium that gets such a huge audience…[we're] going to be making a show that is going to normalize and un-marginalize this population."
The New Old Normal
Gibbs and Macy's enthusiasm speaks to what CinemAbility director Gold sums up as the "ultimate goal: to accept people with their differences, no matter what that difference is" and help incite a cultural shift where the bigots are the fringe dwellers.

"I believe in the power of television," says OITNB's Euston. "I really do. It's not overnight, and it's never gonna be overnight, but we're doing much better."

"That was one of the things we talked about with Transparent," adds Soloway. "We kind of wanted the trans people to be at the cool kids' table, and if you didn't really understand how to correctly gender somebody, then you were kind of missing out on the edge of the moment."

And far as Fraser's concerned, it's high time to hold the television industry accountable. "TV executives — bless their little, normative, unimaginative cotton socks — they're people that only want to produce something that was last year's hit," he says. "Because they're so scared that if they do anything their boss might not like they'll lose their job. They're wrong. Audiences are ready. They want to see us on TV."

Tuesday, January 6, 2015

Disability history/policy scholars take note, 800 boxes of Tom Harkin's papers arrive at Drake University in Iowa

From the Des Moines Register:

A semi-truck backed up to the loading dock at Cowles Library at Drake University early Monday morning and began unloading 40 years of Iowa and American history.

The Americans with Disabilities Act. Two Farm Bills. A presidential candidacy. Thirty-seven steak frys. Bills, books, reports, constituent letters and emails perhaps beyond counting.

In all, 800 boxes of documents, media and mementos were hauled into the university archives on the library's second floor, representing the bulk of now-retired U.S. Sen. Tom Harkin's papers.

The long-serving Democrat and liberal stalwart left the Senate this month after 30 years in office (and another 10 in the U.S. House before that). Drake University and the Harkin Institute for Public Policy and Citizen Engagement are his papers' final resting place, where they'll be organized, cataloged, digitized and made available to anyone with an appreciation for politics, public policy or history.

"The end goal is access," said Hope Grebner, the Drake University archivist tasked with bringing order to the collection.

She guessed it would take her a week just to get the boxes — now massed in a pile on the concrete floor — properly arranged on the gray steel shelves. Then comes the sorting, arranging, the creation of indices and guides to ease the work of scholars and historians.

Those 800 boxes aren't even the whole story. A few dozen more boxes were already in place on Monday, shipped in from Harkin's offices in Des Moines and across Iowa. Two more pallets are on their way in from Washington, D.C., via FedEx, mostly full of awards and mementos.

Already resting on one shelf was a supersized photo of Harkin in denim and a Deere hat, holding a piglet by its hind legs — apparently about to do something for which his successor, U.S. Sen. Joni Ernst, has more recently become famous.

The archives also will house something called a Drobo — a piece of computer hardware containing six terabytes of data — saving for posterity email from constituents, photos and video and even the Word documents saved on staffers' computers.

There's even a way to archive Harkin's Twitter, Facebook and YouTube postings. And archived they will be.
That the Harkin papers represent an incredible trove of primary source data for researchers interested in the Americans with Disabilities Act, U.S. farm policy or the Affordable Care Act is obvious. Likewise Harkin's 1992 presidential bid and perhaps his South Vietnam "tiger cage" revelations as a young staffer.

But who knows what else the collection might contain? Harkin himself may not remember, Grebner said. Treasures are waiting to be found.

"It's exciting to see everything arrive and to think of the richness of these historical documents," Harkin Institute Director Marsha Ternus said. "They cover so many years, and so much legislation that was groundbreaking and important."

Ternus said she's particularly excited about the vast collection of constituent case work — emails and letters from everyday Iowans that an enterprising social scientist could mine for insights into the daily challenges and concerns of people from the 1970s to the 2010s.

The work of organizing and making Harkin's papers accessible will take many months. But Grebner, Ternus and others are aiming to make at least the documents relating to the Americans with Disabilities Act available this summer — in time for the 25th anniversary of Harkin's signature legislative accomplishment.

The timing is fortuitous: documents generated by Senate committees cannot be made public until 25 years after their creation, meaning the ADA materials will be accessible for the first time just this year.

"It's fortunate that one of the most important pieces of legislation that he worked on will be one of the first things that we can make public," Ternus said.

Eventually, Institute staffers want to build programs and exhibits around the materials found in the collection — perhaps on subjects like the ADA or Harkin's annual steak fry fundraiser.

Wednesday, December 31, 2014

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."

Saturday, December 27, 2014

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.”

Friday, December 26, 2014

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.

Wednesday, December 10, 2014

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.

Monday, December 8, 2014

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: 

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."

Thursday, December 4, 2014

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 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. 

Monday, December 1, 2014

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.

Wednesday, November 26, 2014

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."

Sunday, November 23, 2014

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.

Tuesday, November 18, 2014

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.”