Tuesday, January 29, 2013

Documentary about filmmaker Jason DaSilva's personal journey with multiple sclerosis premieres at Sundance

The Hollywood Reporter review:

PARK CITY -- It’s hard not to be moved when the strapping 25-year-old filmmaker Jason DaSilva goes down — literally — on the beach during a family vacation. He had been diagnosed with multiple sclerosis the year before, but until he fell and couldn’t get up, it wasn’t a reality for him. When I Walk is the film he made chronicling his steady decline. The arc and uplift of the story might be familiar, but thanks to DaSilva’s magnetism and skillful direction, this is way more than a conventional weeper. For an audience willing to go there, perhaps on PBS or a niche cable network, it’s a satisfying and worthwhile journey.

Before being stricken, DaSilva had directed short documentaries all around the world and had lived something of a charmed life as the son of a seemingly well-to-do family of Indian descent. In order to keep himself going and keep his mind off the inevitable consequences of his illness, he decided to do what he always did -- make a film. The cruel twist of fate that befalls him is by no means a happy story and to his credit, he doesn’t sugarcoat it, but his triumphs and failures are universal. As his no-nonsense mother is fast to remind him, we are all only here for a very short time and must do the best we can. Learning to do that with an unbreakable spirit is DaSilva's victory and the strength of the film.

To keep things lively and not turn morbid, DaSilva came up with a number of clever visual strategies. Playful black-and-white animation, which he uses throughout, dramatizes the war white blood cells are fighting in his body, devouring his once-healthy nerve endings. At first he’s in denial, thinking that a vigorous exercise regimen will buy him time. Unfortunately, it doesn’t, and before long walking becomes an ordeal leading to new challenges. When he gets a scooter to move around the East Village, where he lives before moving to Brooklyn, he adapts and films scurrying low angle shots from that perspective.

Hoping to find some answers, both physical and spiritual, he goes to India and seeks out yoga and meditation instruction. But it doesn’t help. He struggles to dress himself, and his vision becomes blurred. His favorite grandmother finances a trip to Lourdes, but a miracle does not happen, at least not the way he expected.

As things get worse, his ever-realistic mother tells him that we are all ultimately alone in life, and DaSilva despairs that he will end his days like that. And then he meets Alice Cook, who gradually becomes his soulmate. In one of the film’s most moving scenes, they exchange vows in a small ceremony in a city park and put a "Just Married" sign on his scooter. It’s that kind of humor that helps elevate the material.

Alice is a breath of fresh air not only for DaSilva, but for the film as well. Good-natured without being immune to melt-downs, she not only cares for her husband but also picks up some of the filmmaking responsibilities, contributing to the brisk editing and making the project a true partnership.

And then the miracle does happen — Alice becomes pregnant, much to the delight of the parents-to-be. Given the circumstances, it’s a joyous ending. Life goes on, and, as DaSilva so gallantly demonstrates, for that we can all be grateful.

Production Companies: In Face Films
Director: Jason DaSilva
Screenwriter: Jason DaSilva, Alice Cook
Producers: Jason DaSilva, Alice Cook
Executive producers: Stanley Nelson, Yael Melamede, Lydia Dean-Pilcher
Directors of photography: Leigh DaSilva, Karin Hayes, Alice Cook
Music: Jeff Beal
Editor: Jason DaSilva, Alice Cook
No rating, 80 minutes

Sunday, January 27, 2013

Legally blind college student from Missouri preserves disability history by digitizing ADA documents

From Lighthouse for the Blind in St. Louis:

Sierra Gregg of Kirkwood, a senior at Missouri’s Truman State University who is legally blind, proves that hard work, dedication and belief in a cause can overcome all limitations.

Sierra discovered in 2011 that almost all of archived documents about the Americans with Disabilities Act of 1990 (ADA) on the ADA website for the Presidential Libraries & Museums at the National Archives in Washington, D.C., were not digitized. Dismayed, Sierra began a project to convert more than 50 archived ADA documents on the website into digital formats, which are more accessible to readers with limited vision.
Sierra, now age 21, spent the past two summers in Washington, D.C., leading that effort as an intern at the Presidential Libraries. Sierra’s initiative earned White House recognition.

Sierra was born with a rare birth defect that left her legally blind.  Raised in St. Louis, she became involved with the Lighthouse for the Blind – Saint Louis. Sierra attended the Lighthouse Summer Transition Employment program (STEP), and later earned two scholarships through the Lighthouse Continuing Education program.  The scholarships covered housing costs for a summer internship in the nation’s capitol.
Sierra, who is a Computer Science major with a focus in Library Science, in January 2011 applied for a summer internship at the Presidential Libraries & Museums.  Sierra says, “I can’t explain why I decided to apply for an internship.  It was so far outside my comfort zone, but I was taught to overcome my limitations and this internship was calling to me.”

Sierra hoped for an internship where she could further explore her interest in library management.  John Thompson, president of Lighthouse for the Blind-Saint Louis, wrote a letter of recommendation for her.  Sierra was surprised and thrilled to receive an internship requiring her to monitor and write content for the social media pages of the Presidential Libraries.  With no prior social media experience, but a propensity for tackling challenges, Sierra left for Washington in summer, 2011.

Washington D.C. presented major culture shock for Sierra.  She had an hour-long commute every day on crowded buses and congested metro trains, a daunting task for anyone but especially for people who are blind.  Sierra says, “If I had not attended the Lighthouse STEP program and received training in mobility and how to travel independently, I would never have made it in D.C.”

Sierra quickly adapted to her new position of writing and researching content to post on the social media pages for the Presidential Libraries.  Midway through summer, Sierra decided to write a post about a topic near and dear to her: The Americans with Disabilities Act of 1990.

While researching the act, Sierra discovered that only two of the archived documents on the ADA website were digitized (Digitized documents are more accessible to readers with limited vision.)  Sierra also was disappointed to learn that most official records and manuscripts documenting the history of people with disabilities were not accessible to her or others with visual impairments.

She seized the opportunity to make a positive difference. Sierra spent the remainder of her summer developing a proposal to convert archived documents on the ADA website into digital documents.
Sierra left D.C. that first summer hopeful she would have the opportunity to continue her project.  A few months later, she was overjoyed to find out she had been invited to return to D.C. for a second internship in summer, 2012.

“Without scholarships from Lighthouse for the Blind-Saint Louis, I would not have been able to have internships in Washington, D.C.,” she asserts. This past summer, Sierra worked with several special interest groups and representatives at the National Archives to make her proposal a reality.

On July 26, 2012, the 22nd anniversary of the signing of the ADA, the National Archives launched Sierra’s new web page embedded within the ADA website containing 56 newly digitized documents. These records include letters written by Helen Keller to President Herbert Hoover () and a Braille letter written to President Dwight D. Eisenhower by John Beaulieu.

The ADA was signed into law by President George H.W. Bush in 1990.  The ground-breaking law mandated universal accessibility to Americans who are disabled.  The White House wrote about Sierra’s achievement on its blog.

Sierra says, “I was born visually impaired one year after the signing of the ADA.  I have grown up in a world where my visual impairment is not a hindrance to my success, only a characteristic of who I am.  The ADA has made it possible for me to get the help I need to work toward my academic and professional goals.” 
Sierra, who attended Ursuline Academy when she was growing up, plans to attend graduate school upon earning her Computer Science major degree at Truman State University. She dreams of working in a major library where she can continue her work to help make literature and documents more accessible to those who are visually impaired.

In his photo project "Impaired Perceptions," photographer Brian Steel fights ableism

From CNN:

Brian Steel was taught from birth that he was "handicapped." Singled out in school by policies and his peers, he grew up feeling unfairly judged because of the way his body worked.

Steel was diagnosed with congenital fiber-type disproportion when he was 4 months old. People with this rare condition, also called short fiber syndrome, typically experience muscle weakness, particularly in the shoulders, upper arms, hips and thighs, and may have breathing problems, according to the National Institutes of Health. The NIH estimates that about 25% of people born with the disorder die during early childhood.

Tired of the way people made up their minds before getting to know him, Steel decided to photograph other people with disabilities and tell their stories. The result was a photo exhibit called "Impaired Perceptions" that premiered in Atlanta late last year.

"We filter everything that we see through the lens of our perceptions, so it is not until we are able to step outside of our perceptions that we are able to determine what is real and what is not," the 33-year-old wrote. "The portraits are traditional, empowering and show each person's humanity."

CNN asked Steel about his exhibit, the misperceptions he faces and how we can do more to accept others. The following is an edited version of that interview.

CNN: How does this condition affect your daily life?

Steel: It has made me physically weak, so it makes a lot of tasks more difficult. I can't lift or carry anything much over 5 pounds. I have a hard time getting out of low chairs because of my weak leg muscles. My weakened chest muscles have caused me to have sleep apnea and make me susceptible to pneumonia.
Physically, it may have made me weak, but in other ways, it has made me stronger. It has made me more creative because I have had to find alternative ways to accomplish the same tasks that would otherwise come (easily) to my able-bodied counterparts.

I have had short fiber from birth, so I haven't known any other reality. To me, it is just life, and I am very grateful for my life.

CNN: What "impaired perceptions" did you face as a child? As an adult?

Steel: As a child, I mainly remember being seen as different. People would often stare. I remember in my elementary music class, the teacher made us sit on the end separate from the able-bodied children, and we were not allowed to touch any of the instruments.

Once I became fully integrated into the regular classroom, things were a lot better. The great thing about being a kid is that you are mostly around other kids, and children are generally very open about what they think and ask questions when they don't understand. I would have classmates ask me why I appeared different to them, and I would tell them about my condition. After I explained my condition, it was settled.

As an adult, things are much more under the surface. Where children are young and trying to get a sense of their world, adults tend to think that they already have things figured out. Most grown people will not come out and ask me about my condition, so in order to make sense of me they have to either watch and gather information through observation or use their own preconceived notions.

What I usually encounter from adults (is) people asking me who takes care of me or talking to me as though I were mentally challenged. It isn't too unusual for someone to be surprised that I can drive a car. I live a completely independent life.

To be fair, people also tell me that I inspire them simply by living my everyday life, and that is a good feeling.

CNN: What gave you the inspiration for this photo project?

Steel: "Impaired Perceptions" started from something that had been welling up inside of me. Throughout my life, I have experienced many encounters where people doubted my intelligence and abilities because of my appearance.

I was approaching the completion of my graduate education and preparing to enter the professional world. My concerns and frustrations regarding how I often felt perceived by strangers suddenly became more important to me.

I began by writing phrases on my body that represented the misperceptions that I felt from others and photographing myself. (But) I didn't want the project to just be about my story, because I wanted the message to have a bigger impact.

As I began interviewing different people with various physical impairments and hearing their stories, I realized that some individuals seemed to have more confidence and hope than others. I then became just as concerned with empowering others as I am with trying to change people's perceptions.

People form a lot of their identity from how they feel perceived by others, and others often form their opinions ... from what that person thinks of him or herself. Therefore, the most effective way to eliminate negative perceptions of people with impairments is to empower them.

CNN: What do you hope people take away from it?

Steel: The overall message is that you cannot tell what a person is capable of or what their life is like simply by looking at them. That is true regardless of ability, race, religion or orientation.

Some of the people I photographed and interviewed for this project appeared to be perfectly able-bodied but actually have impairments that limited them physically. They are misperceived in a manner that is almost opposite to my experience. They talked about how judged they often felt because people could not understand why they weren't doing certain things that required more physical effort.

On the other hand, I met people who had experiences where people felt compelled to help them because they were in a wheelchair, but those individuals are fully capable and have accomplished more than a lot of their able-bodied peers.

My point is not to say that one group is better than the other but rather that you simply can't know what someone is capable of without getting to know them.

The other part of the message that I hope makes a big impact is that you shouldn't let anyone tell you what you are capable of. There are many different kinds of ability and strength. My prayer is that some people who may have given up and accepted a role that they did not choose will find hope and work towards a life that they want.

CNN: What do you think we need to do as a society to better accept differences in others?

Steel: The best way is simply to teach and encourage people to individualize. Simply learning about different conditions or religions is not enough to know all of the people that have those conditions and/or practice those religions.

In my project, I included interviews along with the portraits so that the viewer could get a real sense of who they were. I recently curated "Inside the Outsider," a photography exhibition for Mason Murer Fine Art. The theme was about how we have all felt like an outsider in some way, and in that way, we are all the same. I think if we took that to heart, we would realize that there isn't anything that we are going through that no one else is and that no one is as different from us as we may think that they are.

We have to teach ourselves to suspend our initial judgments and get to know a person before we form our opinion of them. What makes it difficult is that out of self-defense, we instinctively attempt to categorize people and things to avoid possible dangers.

I am not suggesting that we ignore our gut feelings entirely but rather that we suspend our final judgments until we have more information.

Friday, January 25, 2013

Five who imprisoned disabled adults charged in deadly Philadelphia "dungeon" case

From Reuters:

PHILADELPHIA - Five people are accused of imprisoning disabled adults in a Philadelphia basement to steal their Social Security checks, part of a pattern of terror that stretched over a decade and resulted in two deaths, a prosecutor said on Wednesday.

Each defendant in the so-called Philadelphia dungeon case faces life in prison, U.S. Attorney Zane David Memeger said at a press conference to unveil the 196-count indictment.

The alleged ringleader, Linda Weston, 52, could also face the death penalty because she is charged with two counts of murder in aid of racketeering, Memeger said. At times she chained captives, or put drugs in their food to subdue them, while cashing their government payments.

The malnourished captives were discovered in October 2011 by a landlord during a routine check of the two-story apartment house in a working-class Philadelphia neighborhood.

Authorities said two of those held had been imprisoned for roughly 11 years.

"Shocking does not begin to describe the criminal allegations in this case where the victims were tied up and confined like zoo animals and treated like property akin to slaves," Memeger said in a statement.

The indictment accuses the basement captors of racketeering to steal disability payments from adults with the comparative mental capacity of a 10-year-old child.

It said they met their victims in various ways - one was a niece of Weston; another she met at the home of her sister, while another victim was picked up on a street corner shortly after being released from a mental health facility.

The combined thefts from the scheme amounted to $212,000 over 10 years, Memeger said.

Weston's conduct, in what prosecutors called abusive control and confinement techniques, led to the death, in Virginia in 2008, of a victim identified in the indictment by the initials M.L.

The victim died of bacterial meningitis and starvation, the government said.

Another victim, D.S., was kept in a Philadelphia house in 2005, fed a substandard diet and was not allowed to use the bathroom. That person was eventually found dead in the basement of the house.

In addition to profiting from disability payments, the indictment said, Weston forced two female captives to have sex-for-pay with men, with the money going to Weston.

Four of the defendants, including Weston and her daughter, had been charged with state crimes stemming from the scheme. A fifth, Nicklaus Woodward, of West Palm Beach, Florida, was arrested in Florida on Wednesday, Memeger said.

Assistant U.S. Attorney Faith Taylor, who appeared in court Wednesday afternoon for the initial appearance of the original four defendants, said she expects state charges to be dropped.

British blogger starts newspaper for people with intellectual disabilities

Easy News is a project I am proud of because accessible news is vital to full participation in society, says Kaliya Franklin in The Guardian in the UK:

 As I became more involved in campaigning I realised how difficult it can be to ensure information is accessible to all. Some disabilities were relatively easy to provide accessible information for, by asking people to make transcripts of audio for people with hearing impairment or ensure written information is compatible with speech-reading software used by those with a visual impairment. But it felt unconscionable to be campaigning for all people with disabilities without providing information that could be understood by people with learning disabilities as well.

In September 2011, I challenged the Labour leader, Ed Miliband, at the party conference on why his party wasn't speaking on behalf of disabled people. He apologised and pledged to do more. I wanted every disabled person to know about this promise so that they could hold him to it, but I knew that my blog or Twitter account wouldn't reach many people with learning disabilities, of which there are an estimated 1.5 million.

So, I got in touch with the disability charity United Response, which advocates better access to democracy, to write up an "easy read" report on what had taken place – one which used visual cues and simplified language to get across the important information. To my delight, hundreds of people read it and passed it on. Twitter was buzzing with it.

We worked together again on the first report by disability campaigners Spartacus, which challenged the government's plans to abolish disability living allowance. United Response translated the Responsible Reform report into an easy-read version, helping it to have a bigger impact across traditional and online media.

United Response media team and I agreed it was a shame that there wasn't a more regular source of easy-read news. It was a lightbulb moment. That's when the idea of Easy News was born, the first-ever newspaper aimed specifically at people with learning disabilities. A publication that would keep them informed on key events and political stories in a way that would make sense to them.

The Big Lottery funded a year-long pilot. I stayed in touch, offered encouragement and was thrilled to watch the idea take shape. UR Consultants – an expert team of people with learning disabilities employed by United Response – translated the news stories into an easy-read format.

Research by the charity among 300 people with learning disabilities found that just 16% were interested in politics, largely because of the inaccessible way it is presented. Only one in 10 read newspapers, but an encouraging 58% said they would read an easy-read one.

Of all the campaigning I have done over the past few years, Easy News is the project I am most proud and excited to be involved in. Full participation in society means being able to understand and inform ourselves about the world around us – only then can we choose who to vote for and be part of the democratic process as full citizens. It is also really important that politicians understand people with learning disabilities have the right to vote, because often political decisions are based on how certain groups of voters will react to them. Easy News is a vital part of this process and another step along the road to full rights and participation for all disabled people.

Read an extract from Easy News at guardian.co.uk/social-care-network. • Kaliya Franklin blogs at benefitscroungingscum.blogspot.co.uk and tweets @BendyGirl

Wednesday, January 23, 2013

Comic book writer wants to make epilepsy cool in his time-travel fantasy, Sacrifice

From USA Today. In the picture, "Sacrifice" writer Sam Humphries uses a double-page spread of odd colors and imagery to depict what it's like to feel an epileptic seizure.

According to Sam Humphries, there's absolutely nothing cool about having epilepsy. He's trying to change that with his time-travel fantasy, Sacrifice.
Written by Humphries and drawn by Dalton Rose, the self-published comic-book series takes a modern-day man and Joy Division devotee with the same neurological disorder as Humphries and, by way of epileptic seizure, plunges him into the past more than 700 years to the era of something else that's personal to Humphries: the ancient Aztec civilization.

"What people know about the Aztecs these days is either woefully inaccurate, if they know anything at all, or it's just disparaging," Humphries says. "There are a lot of old preconceptions about the Aztecs that go back to self-serving stories of the Spanish and the colonial Europeans that have survived for centuries. That's the only reason why in the past few decades have we done a broader cultural understanding of the Aztecs than we were.

"The sad part is the old story, the prejudiced story, isn't that interesting. The
 true story is extremely fascinating. So I really wanted to get that across in a popular format."

Nearly a year after the release of the third issue, Sacrifice No. 4 arrives in comic shops and online Wednesday — the hiatus gave Humphries and Rose a chance to finish up the rest of the six-issue miniseries and also get all their other jobs in order. Known in the indie-comics world for his hit Our Love Is Real, Humphries had a huge 2012 in the mainstream, penning Ultimate Comic: Ultimates and John Carter: The Gods of Mars for Marvel Comics as well as Higher Earth for Boom! Studios.

In Sacrifice, Humphries' main character, Hector, has a seizure in the parking lot of a San Diego fast-food restaurant and, courtesy of a visually surreal experience, is transported to 16th-century Mexico and discovers the Aztec world firsthand.

Issue 4 continues Hector's journey as he is caught in the middle of an Aztec war, casts him in a new role as he gets used to his odd surroundings, and brings in the "butterfly effect" a smidge.

Knowing of history and how the Spanish conquistadors conquered the Aztecs, Hector moves to keep that from happening, although certain Aztec figures figure out that he's operating with a different knowledge base from their own and understand the consequences of messing with the future.

"The Aztecs were fascinated with time — a lot of their science is built on time, a lot of the religion and philosophy had to do with the nature of time, in a much more sophisticated way than the whole end of the Mayan calendar," Humphries says.

"To an Aztec, the idea of changing history and playing with time in a way that'd be considered cavalier would be anathema to their culture and beliefs."

Fans often ask him how much research he did on Aztec society and culture for Sacrifice, but it's actually his love and ongoing obsession for them that spawned the book in the first place.

Humphries began his fascination randomly about 10 years ago, he says. His gateway in was the "gradually dawning notion" that the Aztecs were a complete and advanced people that flourished without having any contact with the civilizations of Europe and Asia that influenced our own global culture today.

"When the Spaniards encountered the capital city of Tenochtitlan in Mexico, that city was the third largest city in the world," Humphries explains. "Probably none of those conquistadors had ever seen a city that size in their life. It'd be like if we went to the dark side of the moon today and discovered an alien city the size of Singapore. It'd be so completely foreign to us that we could only barely wrap our minds around their culture and customs and words and what that even meant for us and our civilization.

"When the conquistadors encountered the Aztecs, it's the closest thing we've ever had to an alien encounter in human history. Science fiction taking place right here on Earth."

In addition to collecting stacks of books on the Aztecs, Humphries has also studied their military and poetry and even took an Aztec cooking class.

When the Spanish conquered the Aztecs, they discovered chocolate, taking it back to Europe and protecting the recipe "as if it were an oil reserve," Humphries says. "Other countries in Europe tried to discover this secret of chocolate, which I think could be a whole graphic novel on its own."

As Sacrifice nears its endgame, Humphries teases that readers will see the infamous confrontation between the Spanish and the Aztecs, and maybe some tweaking of the time line, as well.

"We're not just gonna see history as it unfolds in the rest of the book, but we're going to the very edge of history and going outside of it," the writer says. "We'll see the epic scope of one of the biggest moments in history, and we'll go beyond the knowledge of history and mankind and consider the events in Hector's life from that perspective."

Bringing a good representation of Aztecs to comics was one goal for Humphries with Sacrifice, but another was writing a story where being epileptic is actually a plus.

"Pretty much the only cool thing about having epilepsy is that in several disparate cultures around the world and in history, being an epileptic made you a holy person," Humphries says. "It made you someone with a connection to the spirit world or the afterworld, and it immediately made you a person of high regard and power in society.

"When Hector goes back to the Aztec empire, they're about to kill him and they realize that he is a holy person as well, and that transforms it from a story where the main character gets killed off in the first issue to a story that has a much larger epic scope."

The history of epilepsy has long been tied to religious experiences, but for Humphries, who had his first seizure when he was 8, it wasn't that much of a positive in his childhood, he says. "Especially when you're a kid, there's nothing cool about being an epileptic. Nobody wants to be the spaz at school."

Also, he adds, "the kind of seizures I have and I experience come across as a really violent religious epiphany that you would never really want to have."

However, Humphries admits that a seizure is a very strong out-of-body experience. "Being able to take that experience and turn it into something thrilling and visually beautiful but also terrifying at the same time was something I really wanted to do in the comic book."

To depict it in Sacrifice, Humphries wrote Rose a really long description of what a seizure's like from his point of view that was so vivid "I'm sure it came across as the rantings of a crazy person," says the writer. Most people know what a seizure looks like from the outside — "Comical and horrifying, all at the same time" — but it's also terrifying and completely removed from most any other sensory experience he has ever had.

The word "disorienting" doesn't even begin to cover it, Humphries admits.

But he thinks what Rose brings back in the comic every time Hector has a seizure is a great encapsulation of the experience — a double-page phantasmagoria of lights, colors, weird imagery, memories and, in Hector's case, a shadowy figure.

"There is so much of a subjective experience in having a seizure that can never be captured in a drawing or a two-dimensional page," Humphries says. "But Dalton comes really close to giving you an idea of what it feels like in that moment."

Tuesday, January 22, 2013

Hemingway family mental illness explored in new film

From CNN:

Every family, even famous ones, have secrets. The Hemingways are no different.

"We were, sort of, the other American family that had this horrible curse," says Mariel Hemingway (pictured). She compared her family to the Kennedys -- but the Hemingway curse, she said, is mental illness.

Hemingway, granddaughter of acclaimed author Ernest Hemingway, explores the troubled history of her family in "Running from Crazy," a documentary that premiered at the Sundance Film Festival on Sunday. Barbara Kopple is the director; Oprah Winfrey is the executive producer.

"Knowing that there's so much suicide and so much mental illness in my family, I've always kind of been 'running from crazy,' worried that one day I'd wake up and be in the same position," Mariel Hemingway, 51, said at a support group for families of suicide, as shown in the film.

Ernest Hemingway took his own life in 1961. His granddaughter Mariel never knew him. 
Hemingway told CNN last week she wanted this documentary to be an unveiling of her family history, and to give people permission to express their own "stuff," to realize they're "not alone in the world of dysfunction."

The documentary guides the viewer through the turmoil of her parents' marriage and the troubled relationships between her and her siblings. It includes archival footage from when her sister Margaux Hemingway, who took her own life in 1996, had been making a personal family documentary.

"Suicide has no rhyme or reason," Hemingway said. "Some people think about it for years and plan it. Some people, it's 20 dark minutes of their life that they decide to take their life that comes out of the blue. It's very random, it's very frightening."

Whether Hemingway is jumping on a trampoline or submerging herself in a cold stream, with her pointed nose and bouncy blonde hair, her message in the film is one of achieving mental well-being and overcoming one's own problems. These scenes contrast with newspaper clippings, still photos and melancholy video clips from her family's past.

Seven members of Hemingway's family have died by taking their own lives, including Ernest and Mariel Hemingway's older sister Margaux, she said. Mariel Hemingway had denied her sister's death was a suicide until an event hosted by the American Association for the Prevention of Suicide in 2003.

Ernest Hemingway, who won the 1954 Nobel Prize in Literature, struggled with depression and killed himself in 1961, just months before Mariel Hemingway was born. But suicide wasn't something that was talked about when she was growing up.

"Nobody spoke about anything," she said. "It was a different generation." Even her sister's suicide was not talked about, she said.

The film's biggest revelation, which was the most difficult part of her family history for Hemingway to reveal, is that she believes her father, Jack Hemingway, sexually abused her sisters Margaux and Joan, nicknamed "Muffet." Hemingway drops this information bomb only briefly in the film -- the first time she has revealed this publicly. Jack Hemingway died in 2000.

Hemingway told CNN she does not remember her father abusing her, but notes that she did sleep in the same room as her mother, who had cancer, possibly as protection from her father. She is not sure if her mother knew what was going on. It's possible that her father didn't even remember doing it, she says, because he was drunk. Alcohol abuse also runs in the family, she said.

Mariel Hemingway began her screen acting career as the younger sister of a character played by Margaux in the 1976 film "Lipstick." Critics praised Mariel and dissed Margaux, which strained their relationship.

But Mariel Hemingway said she had been in touch with her sister the week before she died. "She was seemingly OK," she said. "But you never really know with suicide what's going on in a person's mind."
Prior to the film, Hemingway only saw her sister Joan Hemingway about once a year. Muffet Hemingway lives in Sun Valley, Idaho; Mariel Hemingway lives in Los Angeles.

Muffet had experimented with LSD when she was young, and received a diagnosis of manic depression. Mariel Hemingway has discussed her sister's struggles in numerous interviews over the years.

"She represented being, you know, 'crazy,' " Mariel Hemingway said last week. "I always feared that I would wake up that way, or that maybe I was that way and I didn't even know it."
But since doing the film, they have seen each other a bit more often, including at Christmas. Making the movie has made Mariel Hemingway get over her fear of seeing her sister, whom she describes as "such a loving, kind person."

"My dream is to be able to have enough money to take care of her myself, and really take over her care," she said.

Attempts by CNN to contact Joan Hemingway were unsuccessful. An April article in the Twin Falls, Idaho, Times-News said her artwork was being featured in a business in Ketchum, the town adjacent to Sun Valley. Business owner Nicola Potts told the newspaper that Joan Hemingway, 61, leads a "very happy, very private life."

Mariel, too, said she has had depression and suicidal thoughts, and recalls suffering insecurity and being fearful and depressed growing up. When she overcame that, "I was like, 'I've spent all my life being that way,' " she said.

To move past these feelings, Hemingway says she has "done everything" -- psychotherapy, gurus, holistic doctors -- and each of the methods she has tried have given her something of value. On her blog, for instance, she recommends that everyone take a few minutes of silence in the morning and before sleeping to be still and silent, which helps her to be more calm and focused.

Practices such as these, in addition to exercise, spending time in nature, and eating right, have all helped her achieve peace, she said. It's only within the last four years that she feels she has completely overcome depression.

"It's amazing to me that I'm not sad anymore, and that I don't worry and that I don't fear," she said.
These days, Hemingway and her boyfriend Bobby Williams have a lifestyle company called TheWillingWay ("He has the 'will,' I have the 'way,' " Hemingway said). Health and wellness are her passion.

She also advocates for suicide and mental illness awareness. She is open and communicative with her two daughters about their own mental health, too.

"I think people need to talk about it a lot," she said of mental illness, "Making it OK that it's in your family." She added, "It doesn't shame anyone, and it doesn't make anybody's family an ugly, bad family."
That is a challenge to which this Sundance film also rises.

Monday, January 21, 2013

Kennedy Center offers ‘sensory-friendly’ concerts for disabled children

From The Washington Post:

The children do not know that the music is about war, yet they stomp along with the fury. A young boy shakes his hands as though they have caught fire, keeping tempo with the violin’s shrieks. A girl in a pink romper, no older than 6, jumps to her feet to conduct from the 12th row. And at the abrupt end, the children wail without inhibition, because this is how one feels after hearing Shostakovich’s Eighth String Quartet; this is how one feels when dropped from its dizzying pull. And when children with autism or special needs feel something inside, they often express themselves with movements and sounds.

Myles Bryant, 8, seemed absorbed in the music during the Kennedy String Quartet’s “NSO Kinderkonzert: Musical Opposites” last Saturday. After hearing pieces by Beethoven, Haydn and Tchaikovsky, he summed up his first concert at the Kennedy Center in just three words:

“It was real,” he said confidently. Somewhere, Shostakovich is smiling.

The Kennedy Center’s “sensory-friendly” performances make special accommodations for children on the autism spectrum, who are sensitive to loud noises, bright lights and sudden movements. The center has offered three sensory-friendly shows since April, and they are proving popular: A sellout crowd of 280 attended “Musical Opposites,” with tickets priced at $18. To accommodate special-needs children, the lights in the theater remain at a low level, and the rows are half-empty so the children can move around. Music is vetted by experts, and ushers are given special training to prepare for the children, many of whom have never before been to a concert hall.

“This is the first time we’ve had the opportunity to do something like this,” Dane Bryant, Myles’s father, said of his family’s outing to the Kennedy Center’s Family Theater. Daughter Nija, 10, plays the piano and the cello but had never been able to attend a children’s concert with her whole family because her brother is on the autism spectrum.

“He can be a little impatient,” Dane Bryant said of Myles, who attends the Ivymount School in Rockville for children with special needs. “But he seemed to be paying attention, which is always a plus.”

Marla Hollander brought her 8-year-old son, Benjamin Katz-Hollander, to the concert. She said he has taken guitar lessons as a form of music therapy but had never been to a classical concert in Washington.
“We are tickled to see the sensory-friendly performance and to try to give him this experience,” she said. “Music is just another way for us to connect.”

Until recently, concerts at performing arts centers around the country were not widely available to special-needs children. The concert hall is arguably one of the most restrictive spaces in American culture, with social codes that dictate dress, behavior and manners. Few children, let alone those with special needs, can sit through a Mahler symphony without squirming.

The program signifies a shift for what was once an excluded community. Those with varying degrees of autism can attend concerts and plays with their parents, a luxury many have never had the chance to experience. Surrounded by others who understand the daily challenges of autism, no one stares if a child cries out during Debussy or darts for the door during Pachelbel’s Canon.

“Children with autism have difficulty picking up on social cues,” said Janet Wintrol, director of the Ivymount School. She works with the Kennedy Center on sensory-friendly concerts to ensure that they meet the needs of children on the autism spectrum, which includes Asperger syndrome and other pervasive developmental disorders that affect how a person perceives sensory input. “It makes it hard for them to attend concerts. . . . But when something interests them, they stay focused.”

Holly Hamilton, a violinist with the National Symphony Orchestra and the Kennedy String Quartet, developed the “Musical Opposites” program with special-needs children in mind. Her son Clark Patterson, 28, has an intellectual disability as well as visual and hearing impairments. Still, he is an opera and classical music enthusiast who often attends his mother’s concerts. Hamilton, who has been an NSO member for 34 years, would take him in the summer to watch the orchestra rehearse at Wolf Trap, where he could applaud and playfully conduct the orchestra from afar without causing a disturbance. Watching him take to concert music convinced her that all children, especially those with special needs, should have the chance to attend concerts.

“Sometimes I think they appreciate music more,” Hamilton said. “They don’t have any inhibitions, so when they really like something, they’ll jump to their feet. They’ll yell, ‘Bravo!’ They’re not afraid to express themselves.”

Hamilton is committed to giving them a place to do just that. In addition to performing at the Kennedy Center, Hamilton takes chamber groups to the Ivymount School and other special-education schools. She also works with Music for Autism, a nonprofit group that stages sensory-friendly performances in cities across the country.

“Our programs create a bridge between the artist and a population that is shut out from the live-performance experience,” said Robert Accordino, a founder of Music for Autism. “In some cases, it wouldn’t be appropriate for a person with autism to attend a concert at the Kennedy Center or Lincoln Center. . . . Our goal is to create a safe space of acceptance that will have a ripple effect later. ”

Theater and performing arts centers around the country are increasingly staging sensory-friendly events for the autism community. To prepare artists and staff, the Kennedy Center worked with Paper Mill Playhouse in New Jersey, Adventure Theater in the D.C. area and the Smithsonian Institution, all of which have sensory-friendly programming.The Smithsonian inaugurated “Morning at the Museum,” a sensory-friendly museum experience, a few years ago and recommended advisers for the Kennedy Center’s program.

“The field of autism is growing,” Betty Siegel, director of the Kennedy Center’s Department of VSA and Accessibility. “We’ve been hearing from patrons and families about the needs of the kids and thought it was time for us to give it a try.”

For the pilot performance in April, demand was so high that the free tickets were gone within 48 hours. The center will host four sensory-friendly performances this season, and given the response, it is anticipating offering more.

Hamilton stresses that all children, not just those with special needs, enjoy the concerts. The musicians teach the children about tempo, dynamics and key changes, all while hamming it up on stage. (The audience howled when cellist David Teie picked up his instrument and played it like a violin.) Children can even play violins and cellos at the instrument “petting zoo” before the concert begins.

“Sometimes it’s hard to engage them,” Hamilton said. “But you know it’s all going in. You just don’t know what’s going to come out.”

Preparing the children for the concert is another consideration. Because children with autism find change difficult, the Kennedy Center posts a pre-visit digital storybook online to help parents familiarize their children with the experience before they arrive. The book illustrates the step-by-step details of concert going, showing ticket machines, ushers, escalators, even the Kennedy Center’s red bus.

Parents such as Hollander appreciate the support.

“Knowing what to expect is always half the battle,” she said.

As for Hamilton, every concert is another opportunity to give children and their families the musical experience that her son had.Having raised a child with a disability, she knows just how much these programs mean to families.

“Many parents have come to us in tears,” Hamilton said. “They say, ‘I can’t take my child to a regular concert. I feel like they’ve missed out.’ Having the sensory-friendly concerts here, they can bring their families to the Kennedy Center and have an outing as a family. It’s fantastic.”

Friday, January 18, 2013

Her disability is advantage on 'The Bachelor,' Sarah Herron says

From USA Today:

Of all the women Bachelor Sean Lowe could have picked for his first one-on-one date, he chose Sarah Herron, 25, an ad exec from Colorado who was born with only one full arm.

Herron, one of 16 women still in the running for Lowe's heart, said in a press call today that, yes, maybe her disability, the result of a birth defect, has given her an advantage.

"It helped me stand out and catch his attention, and I'm grateful for that."

She says, "I think what happened is I introduced myself to Sean and made an impression and he saw me as a unique, strong, courageous individual and that I deserved this opportunity as much as anybody else." It made her feel, she says, "like the most lucky girl in the world."

And their date was no picnic, although they had one afterward. The two jumped off a skyscraper in downtown Los Angeles, doing a free-fall for 300 feet. Although we saw her screaming as it happened, she said today it was "cool" and "adventurous."

The decision to come on the show has been an adventure, too, admits Herron. "I was nervous. I knew I was putting myself out there and I knew America was going to see me in my most vulnerable state."

But she "decided to bite the bullet and apply" after seeing Lowe, 29, on Emily Maynard's season of The Bachelorette. "I was really interested in him. He's incredibly attractive."

When she was accepted for the show, she says, "It was kind of this dream come true. I'm still having trouble wrapping my head around it."

Now, she has become something of a role model. "I've been doing a little reading of comments online and on some message boards. It seems to be incredibly positive and I get overwhelming feedback from women saying I've inspiring them and motivated them." She continues, "I truthfully went on the show to meet Sean, but if I'm a role model for anybody, I'm honored that people perceive me like that."

It wasn't something she had thought about. "I was worried about Sean liking me. I was never was concerned what the public was going to say or people were going to say. I've grown up with it my whole life. I'm not concerned about being talked about."

Lowe, she says, immediately put her at ease about everything. "Here's the thing, I think most women have their insecurities whether it's your weight or your style or the color of your hair. Everybody has something about them that they don't feel awesome about. For me, my barrier is having one arm."

She brought it up with Lowe on the first night they met and, she says, "It was important for me to let him know everything that I could ... and be open and honest." And, she adds, "He made it clear he was comfortable and we could just move on."

Herron says the Bachelor women, who can get pretty catty as they compete, were also "very, very, very sweet. The girls were welcoming and encouraging, and immediately just bonded with me so well. I feel like it's very strange how close I got with the girls and they all just wanted me to succeed and do well."

So far, anyway.

And if she doesn't end up with Sean, who's a good match for him? "I honestly really think Lesley M.," says Herron, referring to the 25-year-old political consultant whose hometown is Fort Smith, Ark. "I think she's a wonderful girl with a great career and she's beautiful and has an amazing body and she's so cool. I really see this great spark happening between them. I think Lesley M. is a possible contender."

But stay tuned, Herron says. "The next episode is going to be a pretty big shocker. There's a lot of drama that happens next Monday night. It's going to be interesting to see how it all unfolds. We're all finally settled into the house and seeing true colors come out, and I think things are going to start to get interesting."

Service dogs to walk in inaugural parade

From Voice of America:

Caroline Elgin in The Plains, Virginia, got her service dog Sajen when she was almost 10 years old. Elgin has cerebral palsy, which has affected her speech and motor skills, but not her intelligence. Now 19, she says Sajen makes her happy.
Sajen knows more than 60 commands and helps Caroline by picking up items and giving them to her, pulling off her socks, and retrieving his leash. He can also shut a door.
Elgin’s mother, Carina, says Sajen has given her daughter more confidence.
“Since Caroline has had Sajen, her personality has really been able to blossom. She was very shy. But once she got the dog she was proud to have him sitting next to her and more comfortable going into public settings, and it’s just really changed her life completely I think," she said.
Caroline Elgin says people are more at ease approaching her when Sajen is next to her.
In nearby Middleburg, Virginia, 11-year-old Bobby Slater is teaching basic commands to Shiloh, in hopes she will become a service dog to help people like Caroline. These dogs are especially bred and trained by Canine Companions for Independence, or CCI, a non-profit group that provides service dogs to people with disabilities for free. When they are two months old, they are sent to live with volunteer puppy raisers, like Slater.
He brings Shiloh to school to teach her socialization skills. “When I tell her to sit, she’ll sit halfway and see if you’ll give her a treat, but I tell her to sit all the way, and then she’ll sit," he said.
His classmate, Sucie Jones, also helps with Shiloh.
“I feel like it’s a good experience to have a dog in our classroom, because we all take some time taking turns to take her outside and telling her words to teach her how to do stuff," she said.
When CCI puppies are a year and a half, they leave the volunteers for advanced training at the organization’s regional centers. Only 40 percent pass and become service dogs. The rest are often adopted by their puppy raisers.
Bobby Slater’s older sister, Meg Ann, has also trained CCI puppies. “It’s really hard knowing you have to give them up, but it’s also great knowing that they’re going to go and change someone’s life and make their life a lot easier," she said.
Her brother and Shiloh will be in the inaugural parade.
It is an experience that will be shared by Caroline Elgin and Sajen, and 135 other people and 50 dogs.
She hopes the thousands of people watching the parade will appreciate Canine Companions for Independence, and some may even be able to get a best friend of their own.

Tuesday, January 15, 2013

Young disabled athletes forge an accessible path to starting lines

From The NY Times. In the picture, Mary Kate Callahan, who because of a neurological disease contracted as an infant does not have use of her legs, was initially denied the opportunity to compete in statewide high school swim meets.

Some young disabled athletes are having their own Oscar Pistorius moments — not by breaking barriers in the Olympics, but by battling sports officials over whether and how they should be accommodated in competitions with able-bodied athletes. 

During his ascent as a world-class runner, Pistorius, a double amputee from South Africa, raised thorny questions about the distinction between disabled and able-bodied athletes. He was allowed to compete in last summer’s London Games after prevailing in a legal dispute that reached the sports world’s highest court.
High schools and youth sports organizations throughout the country are grappling with similarly unusual challenges in finding ways to accommodate students with disabilities. 

Should a starting light be used rather than a starting gun for a deaf athlete? Should a swimmer with one arm be allowed to touch the wall with his head instead of his hand? Should a track athlete in a wheelchair be allowed to use arm strength rather than leg muscles to propel toward the finish line? 

Federal laws have long provided guidance on what students with disabilities are legally entitled to during the school day. But what constitutes reasonable accommodation or equal opportunity under the law has become widely debated when it comes to after-school sports. 

The number of cases involving disabled students in sports is not officially tracked by groups representing the disabled, but lawyers and officials say they are encountering more questions regarding inclusion. The increase in interest has prompted the federal Department of Education’s Office for Civil Rights to prepare additional guidance. 

“The courts have made it a gray area when it comes to the question of what exactly is reasonable accommodation in sports,” said Perry A. Zirkel, an education law professor at Lehigh University. 

A tennis player from Mesa, Ariz., found herself in that gray area when she was a sophomore. The player, Kiara Chapple, began taking tennis lessons when she was in middle school with the goal of making her high school team and qualifying for tournament play. Deaf since birth, she relied on an interpreter who stood on the sideline to sign the score and aid communication with opponents and her doubles partner. 

Chapple said she was surprised when, at a doubles tournament in her sophomore year in 2009, her interpreter was removed after complaints from a coach for the opposing team. Chapple and her teammate, who had been leading, went on to lose. 

Chapple, with the aid of the United States Justice Department, filed a legal complaint against the Arizona Interscholastic Association. 

“I thought it was unfair,” Chapple said. “They were discriminating, and I have rights to an interpreter. I felt sad. We lost the match, and I couldn’t communicate with anyone.” 

Many laws pertaining to Americans with disabilities are federal mandates, but the financial consequences may fall on local school districts, many of which are facing budget strains. Coaches can also feel poorly equipped to adapt sports for disabled athletes and ensure safe conditions for all athletes. 

“This is all new to everybody,” said Douglas Lipscomb, the varsity boys basketball coach at Wheeler High School in Marietta, Ga., who has not had disabled athletes on his team. “As a coach, you’re worried about safety issues for all players, especially with basketball as a contact sport. But in coaching, a lot of situations are dealt with on an individual basis. This is a new area.” 

Bob Ferraro, the founder and chief executive of the National High School Coaches Association, said coaches may need special training in accommodating disabled athletes. 

“It’s got everyone thinking,” Ferraro said. “It’s unfortunate we don’t do more with the rules as far as incorporating the challenges that some athletes have. A coach’s role is to provide opportunities for all athletes. And it does challenge the coach tremendously.” 

In a significant inclusion case in Maryland, Tatyana McFadden, now 23, sued the Howard County Board of Education and won the right to compete in interscholastic competition as a wheelchair athlete during the 2007 track season. 

“I think more schools are understanding this is important,” said McFadden’s mother, Deborah. The McFaddens helped promote a state measure requiring schools to include disabled students in sports and other extracurricular programs. At least 12 other states have enacted measures similar to the Maryland law. 

“We hope the law will pressure people toward inclusion,” Deborah McFadden said. “But without a federal or state law, it’s at the will and pleasure of coaches to include kids. Some coaches are fabulous and say, ‘I have no idea how to do this, but I’m willing to try.’ There are resources out there. But we’re a long way from full inclusion.” 

The extent to which a school or a coach might need to make accommodations depends on the sport and the disability. In 1990, Louisiana was among the first states to start a wheelchair division for track and field, and Minnesota has expanded bowling, softball, floor hockey and soccer to include wheelchair athletes. Other states have followed, creating separate leagues or rules for integrating disabled athletes. 

Mary Kate Callahan, a 17-year-old senior at Fenwick High School in Oak Park, Ill., began swimming when she was 6 and hoped to join her high school team. Because of a rare neurological disease she contracted as an infant, Callahan does not have the use of her legs. 

Callahan was told that she could not compete at a statewide competition and that her points earned in meets would not be added to her team’s totals. 

“I really wanted to have a true swim meet,” Callahan said. “I wanted to compete against the best. Swimming is part of my high school experience.” 

Illinois Attorney General Lisa Madigan took on Callahan’s case as a co-counsel and helped win a settlement in September that allowed her to swim at the state meet, along with at least six other high school girls with disabilities. 

The attorney general’s office is continuing to litigate on behalf of all student-athletes with disabilities for a settlement, and Callahan is seeking to participate on her school’s track team this spring. 

“We didn’t change much,” Renee Miller, Callahan’s swim coach, said of how the team accommodated Callahan in the pool. “We made sure we had a bus to accommodate a wheelchair so she could travel with us and made sure that schools we traveled to could accommodate her. 

“This is a unique area for a lot of coaches, and sometimes you have to make it up as you go. You need to do that for a lot of kids, though.” 

Miller said she was concerned about the way Callahan would be treated at meets at other schools. “We wanted total inclusion, and I knew the issue with the association wasn’t moving quickly enough for Mary Kate,” she said, referring to the Illinois High School Association. “We realized there would be some obstacles to overcome, but we didn’t think it would be as big as it was. It was breaking new ground."
Some athletes have faced arguments that their inclusion may pose a safety risk. 

Rose Hollermann, 17, of Elysian, Minn., wanted to compete in track at her school. Hollermann uses a wheelchair as a result of a car accident in 2001. 

Hollermann, who wrote a 15-page paper on Pistorius for a school assignment, had competed in basketball, sled hockey and track in middle school. She wanted to race against able-bodied track athletes, and she requested that the Minnesota State High School League create a system so her points could count toward the team’s total in competitions. 

Initially, the state association had concerns about safety issues like wheelchair collisions, according to a lawyer who represented the group. 

“They’re big, complex machines,” said Kevin Beck, the lawyer. “Safety is always a big issue.” 

A separate wheelchair division was created, in which Hollermann mostly raced alone, and her points did not count toward the team’s total. 

“I’m a competitive person,” Hollermann said. “And they put me in a place where I wasn’t very competitive, just in a race by myself. I almost hit people because they didn’t even realize there was a race going on.” 

She added: “I just didn’t get the fact that they were saying I had an advantage because I was in a wheelchair. How do I have an advantage because I can’t use half of my body? It didn’t make any sense to me.” 

Hollermann won a legal settlement last year that allowed her to race alongside able-bodied athletes. 

Chapple, the deaf tennis player, also reached an agreement with her state association. The settlement with the Arizona Interscholastic Association allowed her the use of an interpreter. 

“We’ve reinforced our process regarding children with disabilities,” said Charles Schmidt, the associate executive director of the association. “We want every child to have an opportunity to participate.”

Sunday, January 13, 2013

ABC Family's "Switched at Birth" will include an episode done entirely in American Sign Language

From St. Louis Post-Dispatch TV critic

Watching Marlee Matlin speak is enthralling, informative and endlessly entertaining. Matlin's hands fly in American Sign Language, while her face adds emphasis and her interpreter, Jack Jason, speaks her words.

On a set visit to ABC Family's "Switched at Birth," in which Matlin, who is deaf, plays a teacher at a deaf school, visiting TV critics first watched Matlin in a scene, directed by "Growing Pains" veteran Joanna Kerns, and then gathered in the Kennish family's living room. There, Matlin answered questions about everything from her bad habits ("I swear a lot," she said) to what she loves about "Switched at Birth," the ABC Family hit in which two teenage girls discover that were switched in the hospital.

One of those girls, Daphne (Katie Leclerc, pictured), is deaf. The other, Bay (Vanessa Marano), is hearing. In two seasons, with Daphne's single mom (Constance Marie, pictured) and Bay's parents (Lea Thompson and D.W. Moffett) and brother (Lucas Grabeel), the girls have become family to each other.

Producers set out from the beginning to use “Switched at Birth” to open a window to deaf culture for hearing people who might know nothing about it and could see deafness as a handicap. ("Don't say hearing impaired," Sean Berdy (Emmitt) told one interviewer through his interpreter. "Say deaf. Don't worry about it; it's not your fault. I just wanted to clear that up.")

To that end, the second half of Season 2, now ongoing, will include an episode done entirely in American Sign Language (ASL). The episode, which ABC Family calls a first for a scripted series on mainstream television, will air at 7 p.m. Monday, March 4.

"The special episode will be told from the perspective of the series’ multiple deaf characters – with open captions for hearing viewers – in a storyline that puts the audience in the middle of a student uprising in which the very essence of their deaf identity is at stake," the network said in making the announcement, adding that “Switched at Birth” is "the first mainstream television series to have multiple deaf and hard-of-hearing series regulars and scenes shot entirely in ASL."

Creator and executive producer Lizzy Weiss said: "I've been wanting to do an all-ASL episode since the series began, and the story line we've been focusing on this season gave us the perfect opportunity. It's an exciting, visual, empowering story of kids who are different fighting back, and it allows our audience to experience the world as our deaf characters do. We've been building to this for 39 episodes and we're all thrilled to be the first to try this."
The story line finds Bay transferring from her school to Daphne's school, which will now admit a few hearing students in a pilot program. Controversy ensues.

Meanwhile, other "Switched" cast members say they've loved learning ASL. At lunch, Lucas Grabeel, a Missouri native and veteran of "High School Musical," showed some of his favorite signs and explained how people from different regions have ASL "accents" and use slang expressions.

Friday, January 11, 2013

Indianapolis Motor Speedway sets timeline to comply to Americans with Disabilities Act

From Autoweek:

United States attorney Joseph Hogsett announced Thursday the execution of an agreement between Indianapolis Motor Speedway and the United States Department of Justice that sets a definitive timeline for bringing the 104-year-old racing facility into compliance with the Americans with Disabilities Act (ADA).

As noted in the agreement, IMS was built in 1909 and has undergone continuous upgrades since that time. The 345-acre facility includes a corporate headquarters, a museum, garages, the iconic Pagoda tower, as well as numerous seating areas and suites. It is the largest spectator sporting facility in the world with more than 250,000 seats, and is among the oldest. Nearly all of the facility was constructed prior to the enactment of the ADA.

In 1999, an individual with a disability attended a practice session during Indianapolis 500 festivities at the Speedway. According to a complaint received by the United States Attorney's Office at the time, the individual claimed that he was denied access to the pit area even though he had a pit pass, and was told it was due to his use of a wheelchair.

As a result, the U.S. Attorney's Office has worked with IMS officials over the course of multiple visits to the Speedway to identify what reforms and restructuring would be required to bring the facility into full compliance. All told, more than 360 features, elements, and spaces at the Speedway were identified as areas to be modified or improved to meet the requirements of the ADA.

Throughout this thorough investigation process, the leadership of IMS has cooperated with the U.S. Attorney's Office, and many of the identified issues have already been addressed. Examples include a number of substantial projects over the last few years to redesign or refurbish the IMS corporate headquarters, three major parking areas, a number of vista and grandstand areas, most concession stands, as well as many of the public restroom facilities.

Thursday's announced agreement sets out a path to complete compliance that includes modifying areas throughout the Speedway to improve access, altering various paths of travel, and ensuring that the Speedway's policies and training procedures provide equal access to the fullest extent feasible.

As part of the agreement, IMS will submit a report to U.S. Attorney Joe Hogsett every 90 days for the next two years, updating the U.S. Attorney's Office as to the progress that has been made toward completing these remedial measures. The Speedway has also agreed to permit follow-up inspections from DOJ officials, and the agreement stipulates that all future building projects must be in full compliance with the ADA.

FDA meets on school electric shock device used on disabled students, warns of violations

From FOX-TV in Boston:

The devices used by a controversial Canton, Mass., school to administers painful electric shocks to its disabled students for treatment was the subject of a meeting today held by US Food and Drug Administration regulators who say the Judge Rotenberg Center is using unapproved and illegal machines.

The meeting also drew a handful of protestors to the FDA's Maryland campus.

"We started the protest to remind JRC and the public that there are still people who are actively and vocally trying to end the practices that are being condoned at the JRC," said protestor Lydia Brown. "The use of any kind of electric shock device on any person as punishment is torture."

The meeting and protest are just the latest development in a series of actions against JRC since video of former student Andre McCollins being restrained and shocked for hours was played in court.

The video, first aired by FOX Undercover, went viral, prompting petitions and protests to stop the shocks.
Critics call it torture, but the center says the device is only used with court approval to stop destructive behavior like self-mutilation.

Now the latest trouble is coming from the FDA, the agency which originally approved the device known as the Graduated Electronic Decelerator, or GED, in 1995.

Since then, the JRC made the devices stronger. In a warning letter issued this past December, the FDA says the new devices were not approved and so are being used in violation of federal law.

The FDA won't discuss what happened at the meeting, saying the issue is still under investigation. But a spokesperson says continued violation can lead to the FDA seizing the devices, seeking an injunction to stop their use and issuing fines.

JRC's troubles don't end with the FDA.

The center is still being investigated by the Justice Department and has drawn the scrutiny of the United Nations Special Rapporteur on Torture.

And Massachusetts State Sen. Brian A. Joyce, D-Milton, a long-time critic of JRC, has written to the FDA asking them to ban the shocks all together. He is also planning on again filing legislation to ban the use of shocks and other aversive treatments in Massachusetts.

In a statement, JRC does not take a position as to whether the devices are in violation, but says, "The FDA's position is important to JRC. JRC continues to work closely with the FDA to address the issues identified in the warning letter; and JRC will continue to address any and all of the agency's concerns."

The statement goes on to say the GED has been lifesaving for students for whom all other treatments have failed.

Deaf woman's eBay complaint highlights dispute over Web access for disabled people

From CNN:

Melissa Earll (pictured) owns stacks of classic comic books, baseball cards that include a young Hank Aaron and Whitey Ford and other collectibles she wants to sell.

But she can't do so on eBay, she says. According to Earll, the popular auction site can't confirm her as a seller because she's deaf.

"eBay keeps me from taking advantage of opportunities that other people have and it's because I couldn't hear," Earll, of Nevada, Missouri, told CNN affiliate WDAF-TV. "Somebody has to have the courage to stand up and say 'this is not right.'"

At issue, according to Earll, is the way the auction site verifies sellers. eBay says it offered Earll alternative ways of verifying her identity. But the dispute casts a light on a bigger question that some experts say may need to go all the way to the Supreme Court: Just how responsive must the Internet be to the Americans With Disabilities Act?

The Internet has long been seen as an equalizer, granting everyone the same access to information regardless of cultural background or economic status. But for some users with disabilities, it's not so simple.

"The ADA was signed in 1990. The Internet didn't really start going until the 1990s," said William D. Goren, a Decatur, Georgia, attorney who specializes in cases involving the federal law. "This is a topic we're going to have to be watching. This is not going away."

In Earll's case, she says she can't use eBay's verification system, which requires sellers to retrieve and submit a password from a telephone call. She can't hear the password and says eBay doesn't use voice-to-text or other technologies deaf people often rely upon.

"They said, can your mom or dad answer the phone for you," said Earll, who lip-reads and speaks with the assistance of a hearing aid. "And I said, I'm a 47-year-old adult woman. No. I don't live at home. No."
A federal judge didn't agree with her argument, though.

U.S. District Judge Edward Davila dismissed her complaint after finding it lacked enough facts. Specifically, he said Earll didn't prove that she tried to register as a seller after talking to eBay about a possible solution.
"eBay is pleased with the court's decision to dismiss the case," company spokeswoman Kari Ramirez said in a written statement. "eBay strives to provide all users with the best customer experiences possible, including those with special access needs. eBay will continue to stand ready to assist those who are deaf or hard of hearing become eBay sellers."

Earll is appealing that ruling.

Little legal agreement

eBay is the most high-profile website to be involved in a disabilities discrimination case since Netflix, which last year agreed to caption all of its online movies and other shows by 2014.

The move, which the National Association for the Deaf called "a model for the streaming video industry," came after Netlix was hit with a 2010 class-action suit because not all of its films were subtitled. A federal judge in Massachusetts ruled in the plaintiffs' favor, saying any new laws regarding the Internet should "complement, not supplant" the Americans With Disabilities Act.

"The Disability Rights Education & Defense Fund," which handled the case, "hopes that this is the beginning of opening the Internet for deaf and hard-of-hearing individuals in streamed entertainment, education, government benefits, and more," the group said at the time.

Arguments for both sides in those and other cases point out something of a problem: There seems to be no agreement on how disability issues on the Web should be handled.

Goren, the disability law attorney, said judges have ruled both ways in those cases, and that even those who agreed cited different laws in doing so.

Some have stuck close to the original wording of the ADA, which requires that places of business be physically accessible to people with disabilities. Websites that represent brick-and-mortar stores need to comply, courts have ruled, while Web-only businesses do not.

Other courts have opined that ADA regulations should obviously be extended to Web companies, since the widespread popularity of Web commerce didn't exist when the law was written. It all makes for a confusing jumble of opinions that legal experts say needs to be clarified.

Congress hasn't been much help, either. Even when they made some changes to the original ADA language in 2008, they failed to address online concerns.

To the Supreme Court?

That, Goren says, means the Supreme Court will ultimately need to settle the issue once and for all.

"This is going to go all the way to the top," he said. "There are so many different approaches. You're going to see the courts split. Unless Congress steps in and talks about how the ADA applies to the Internet, the court's going to have to figure it out."

Eric Goldman, a professor of law at Santa Clara University and director of the school's High Tech Law Institute, thinks current law is somewhat more settled. The argument that won the day for eBay -- that the ADA doesn't specifically mention websites and, therefore, doesn't apply to them -- has prevailed except for in "quirky rulings," he says.

"We might debate the merits of those laws, many of which were written for a different time, but that's for the legislatures to do, not the courts," he said. " As a result, the lawsuits against websites for discriminating against the disabled are not legally meritorious. In this case, the courts bent over backwards -- more than they should have, in my opinion -- to give Ms. Earll a chance to make a valid legal complaint. She couldn't."
That said, Goldman thinks websites should voluntarily be doing more.

"In this case, for example, it seems reasonable that eBay should have a workaround to their authentication system that works for the hearing-impaired," he said. "They may have a workaround -- the materials I've read in this case haven't been clear about that -- but the workaround should be easy enough that Ms. Earll never needed to go to court.

"Some websites may not have the resources to provide full accommodations for the disabled, but a site like eBay does -- and it should do so," he added.

eBay notes that in her complaint, Earll said company agents told her about alternative methods, including submitting proof of identity and SMS text messages, that she and other hearing-impaired people could use to become sellers.

"eBay offers solutions to help the visually and hearing impaired, individuals with color vision deficiencies, as well as those with limited dexterity access eBay's services," said Ramirez, the eBay spokeswoman. On its website, eBay has a page devoted to accessibility issues, including a profie of Rick Willison, a pastor who became a successful seller despite a degenerative eye disease.

For her part, Earll says she's willing to go all the way to the Supreme Court if that's what it takes for her to use the auction site as a seller just as easily as she's used it as a shopper.

"You know what's funny -- eBay loved me as a buyer," she said. "Oh, sure ... because they made money off of me."