Saturday, March 31, 2012

Kenyan wheelchair athletes find peace, reconciliation on basketball court

from Voice of America:

Many victims of the 2007 Kenyan post-election violence were deaf, blind, or unable to run, making it difficult for them to find safety. As a result, one group of athletes with disabilities decided to take the matter to court - the basketball court. With outside assistance, these players revived the Rift Valley Wheelchair Basketball group, helping to teach peace and reconciliation.

Trash talking the opponent, cries of foul play and good-natured hand slaps after successful free-throws. It seems like a typical game of basketball, but these players compete in wheelchairs, and most suffered from polio as children.

Mercy Corps, with the backing of the United States Agency for International Development, began supporting the Rift Valley Wheelchair Basketball group in 2009 - providing funding for income-generating activities, distributing athletic gear and implementing a peace curriculum into the games.

“If you manage to bring all these people together, people from different backgrounds, different ethnic groups, to come and watch this game, and see, they are disabled, number one, but they also come from different ethnic groups and they are playing together and they are enjoying it. Yeah, and making something out of it,” explained Maurice Amollo, Mercy Corps senior program manager for the Rift Valley.

Although exact numbers are difficult to determine, 2009 census data suggest approximately 1.3 million Kenyans live with disability. And in a country where infrastructure and opportunities are slow to cater to their special needs, daily life can be a challenge.

Basketball player Nixon Oroto, 35, was just a baby when he contracted polio. He knows first-hand the challenges faced by those with disabilities.

“You have to. You have to really to struggle," Oroto said. "You have to struggle with your education. You must struggle, if you are not employed. You must struggle and get something that will bring you some income by the end of the day.”

The Rift Valley Wheelchair Basketball group aims to change the perception about people with disabilities. Too often, others assume they are only looking for a handout.

“In fact, we are even thinking of the best way of getting our people out of the streets," Oroto noted. "Because we do not want ourselves to be beggers in the streets. It gives us a very wrong perception. Sometimes you cannot even greet somebody, because when you go to greet him, he always thinks that you are going to ask for a coin.”

The group started a small milk shop in the slum of Langas as a means to generate income. As a way to give back, members planted trees at local schools. Their efforts did not go unnoticed by the community.

“So it was no longer like, 'Oh, but you know, disabled people are supposed to beg and be given whatever'. No, they are giving something and there are so many able-bodied, physically-well people in the community who are doing nothing," Mercy Corps senior program manager Amollo explained.

These collaborative efforts allow members to take out loans to start their own businesses, which frees up time for basketball practice. As team captain, Pius Asuke is grateful for this benefit, and he sees his work is paying off.

“Actually I like this game and by the time I am going to sleep, I am dreaming that I am playing this game," Asuke said. "So, by the time I am coming to this field, I know the work that is bringing me there, so I must do it. I see that I am becoming the best person on this team.”

For these athletes in Eldoret, it seems the sky really is the limit.

Friday, March 30, 2012

Disabled people needing help feel Maine cutbacks

from The AP:

AUGUSTA, Maine — Ethan Kelly (pictured), who has cerebral palsy, graduated from high school in June to the cheers of his classmates and friends. Since then, the 21-year-old has been living at home, needing the constant care of his parents.

"My wife and I and Ethan, it's 24-7," said Alden Kelly, 55, whose family lives in rural Appleton, near the central Maine coast. "It's continuous care and there's no break from it."

The Kellys are among the nearly 1,000 families on an ever-growing waiting list for state support services and help navigating the complex process of lining up those services, such as those required by the 4-foot-5, 60-pound Ethan, who uses a wheelchair and needs a feeding tube to provide supplemental nutrition.

"There's a lot to deal with," said his father said Wednesday, as legislation to restructure the state Health and Human Services Department won support from a key committee. "We've been saying lately, is there an end to this?"

Under the proposed restructuring, the Office of Advocacy is to be eliminated and its functions transferred to a private agency. The budget cut for advocates, who assess needs and organize services, will result in a net loss of 2.5 positions, leaving five statewide.

Amid the planned cutbacks and changes, 983 families in similar straits as the Kellys were on a waiting list for direct caretaking services as of March 19 — up from 615 a year ago, according to DHHS figures.

Those eligible for services include people with what the state defines as intellectual disabilities and have an IQ of 70 or under and cannot function in their daily lives on their own, or have autism.

Richard Estabrook, the department's chief advocate who will lose his job later this year, says other families on the wait list include many parents who are growing too old to care for their grown special-needs children, and many who lack the technical medical skills needed to do the job properly. He referred to one couple who've had their child at home for 47 years. So far they've coped, but now the parents are in their late 70s, and the father has dementia.

In another case, a 22-year-old with a severe mental disability, and who is blind, deaf and cannot speak or walk, requires parental care at all times, putting a severe financial strain on the family. But a report from Estabrook to state lawmakers says the disabled man is listed as having no unmet needs.

With the cutback in services, the wait list is expected to keep growing, said Estabrook. A core problem is that hundreds of people deserving services will fall between the cracks.

"That's why the system is under so much stress," Estabrook said.

Ricker Hamilton, acting director of Adult Cognitive and Physical Disability Services in DHHS, said restructuring of the department is not going to limit services to disabled in any way. He also noted that the wait list is not new and has been around since 2008.

While acknowledging tight funding, Hamilton said the department has been looking for savings and has set as a priority contacting every person on the wait list to update their needs in hopes of helping those in need.

"We know what these parents are going through," Hamilton said.

Department officials said when restructuring was announced in mid-March that the goal was to eliminate duplication, streamline services, reduce administrative costs and improve the transition of clients from children's to adult services.

There are also fears that the system's ultimate oversight agency, the Legislature, is losing track of people in the Kellys' situation.

State law requires DHHS to annually report to the Legislature's Health and Human Services Committee assessing whether the needs of thousands of people like Ethan are being met and whether, as state policy requires, they are being integrated into their communities.

But because of the loss of government staff, that's not being done, Estabrook said in a March 16 letter to the committee chairs.

Autism Awareness Day on April 2 should spur action to combat discrimination, says UN Secretary-General Ban

from the UN:

The annual observance of World Autism Awareness Day should spur global action to combat the “unacceptable” discrimination, abuse and isolation that people with the disorder and their loved ones face, according to Secretary-General Ban Ki-moon.

“Autism is not limited to a single region or a country; it is a worldwide challenge that requires global action,” states Mr. Ban’s message for the Day, observed annually on 2 April. “People with autism are equal citizens who should enjoy all human rights and fundamental freedoms.”

In December 2007, the United Nations General Assembly adopted a resolution declaring 2 April as World Autism Awareness Day in an effort to draw attention to a pervasive disorder that affects tens of millions around the globe. Autism is characterized by varying degrees of impairment in communication skills and social interactions and in restricted, repetitive patterns of behaviour.

In his message, Mr. Ban notes that although developmental disabilities such as autism begin in childhood, they persist throughout a person’s life.

“Our work with and for people with autism should not be limited to early identification and treatment; it should include therapies, educational plans and other steps that lead us towards sustained, lifelong engagement,” he states. “Reaching out to people with autism spectrum disorders requires global political commitment and better international cooperation, especially in sharing good practices.”

He stresses the need for greater investments in the social, education and labour sectors, since developed and developing countries alike still need to improve their capacities to address the unique needs of people with autism and cultivate their talents.

“We also need to promote further research, train non-specialized care providers, and enable the autism community to more easily navigate care systems to obtain services that can support and mainstream individuals with autism,” the Secretary-General says in his message.

Today in New York, Vienna and Geneva, the UN Postal Administration (UNPA) released six commemorative postage stamps and two collectible envelopes dedicated to autism awareness, with images created by artists who have been diagnosed with autism.

The stamps (pictured) will send a “powerful message to people around the world that talent and creativity live inside all of us,” said Mr. Ban.

The UN is the only organization in the world which is neither a country nor a territory that is permitted to issue postage stamps. It is the only postal authority to issue stamps in three different currencies – the United States dollar, the Swiss franc and the euro.

UNPA’s chief, David Failor, told a news conference in New York that the selection process enabled the agency to discover the many hidden talents that people diagnosed with autism have.

“Probably the best part of the process, that we learned, is the talents that some of these people have and working with their families and their relatives and their supporters, and what a great network of people that there is around the world that are really passionate about the subject and want to help raise awareness about it,” he said.

UNPA originally intended to pick three designs to feature on each of the three denominations that it issues stamps for. However, the artwork received was so good that it decided to feature eight designs from among the 200 different pieces of artwork it received.

The stamps will go on sale in New York, Vienna and Geneva, beginning on Monday.

Thursday, March 29, 2012

Children with autism more likely to be bullied, new survey finds

from Education Week:

The early results from a new survey find that 63 percent of children with autism spectrum disorders have been bullied at some point in their lives, three times as much as their brothers and sisters who don't have the disorders.

The Interactive Autism Network's survey also found that children with autism—many of whom have deficits in social development—are often intentionally "triggered" into meltdowns or aggressive outbursts by ill-intentioned peers.

IAN's community scientific liaison, Dr. Connie Anderson, who worked on the survey of about 1,200 children, said the organization delved into the issue because it was a topic of conversation but hadn't been studied in depth.

"It's never OK for my son to hit, but what happens is kids pick at him until he pops, and often times his target is the teacher," one parent told IAN. "His stress builds up as the kids mess with him, then, if the teacher reprimands him, he turns into a Tasmanian devil, scratching, pulling clothing and hair and trying to bite the teacher."

In a discussion about the results, Dr. Anderson said the survey revealed other details—and more questions to explore—about how bullying affects students with ASD.

"Children with Asperger's syndrome are the most vulnerable, and we hope to find out why. Is this because they are usually in general education settings, display traits that entice bullying (like clumsiness or talking on and on about a favorite topic), or some combination of factors?" she said.

One hypothesis: It's because more children with Asperger's are in typical classrooms in regular public schools—which the study found are settings associated with more bullying than other school settings. But that will require more study, Dr. Anderson said.

In addition, the survey found that children with autism who were homeschooled were bullied at the same rate as students enrolled in school. Homeschooling appeared to be an attempt at putting an end to bullying for some families.

One mother said her son, homeschooled ever since being diagnosed with depression in 3rd grade, "is doing much, much better without the constant name calling and being singled out for his 'weird' behaviors!" (Bullying, or the potential for bullying, isn't grounds to warrant a student being transferred to another school, a federal judge has ruled.)

Other studies have found that in general, children with disabilities are bullied more than other students.

The survey also found that one group frequently bullied was children with autism spectrum disorder who wanted to interact with other children but were having difficulty making friends. Of them, 57 percent were bullied, compared to 25 percent of children who prefer to play alone and 34 percent of kids who will play, but only if approached. One bright spot: Children who had learned to make friends successfully were bullied at a lower rate: 34 percent.

As far as kids triggering aggression or meltdowns? Parents were asked if another child, who knows what bothers or upsets the child with ASD, had ever used that knowledge to trigger a meltdown or aggressive outburst on purpose. Fifty-two percent of parents said "yes."

IAN is preparing several scientific papers that address bullying and children with ASD. But in the meantime, the group said, there's clearly a need to increase awareness, influence school policies, and provide families and children with effective strategies for dealing with bullying, whether a child is a bully, victim, or bully-victim.

"Cruelest of all is the fact that bullying may further impair the ability of a child with ASD, who is already socially disabled, to engage with the social world," the network said.

Deaf rapper Sean Forbes talks about how critics motivated him

From The Kalamazoo Gazette:

KALAMAZOO, Mich. – Sean Forbes went deaf at 1 due to spinal meningitis, but he wouldn’t let his love of music disappear no matter what people told him.

As an adult, Forbes said he was frequently told pursuing a career in music was a dead-end. He still uses those voices to take his motivational message and rapping to others, especially in the deaf and hard of hearing community.

“I took those nos and turn them into yeses. It lights a fire in my stomach. It pisses me off,” he said during a phone interview from Royal Oak.

Forbes is a deaf rapper from Detroit who burst on the music scene in 2010. He signed a record deal with Web Entertainment, the label that discovered Eminem, and released his debut EP and the music video for “I’m Deaf.” It features Forbes rapping and signing the lyrics, while the words also appear in the video. He’s also the co-founder of D-PAN, the Deaf Professional ArtsNetwork, a non-profit organization that translates popular artists' songs into American Sign Language music videos for the deaf and hard-of-hearing communities.

He’s been featured on NPR, BBC, Parade Magazine, the Detroit News and the Detroit Free Press, among other media outlets. He also performed on stage with legend Stevie Wonder, which he called his career highlight.

Forbes, 30, will perform and speak at 7 p.m. Friday at Kalamazoo Valley Community College’s Dale B. Auditorium.

“It’s partially about my life story and growing up around the Detroit music scene and the different things I got to experience being a deaf kid and where it led me,” Forbes said of his talk, which will precede his performance.

Forbes, who also plays drums, can hear deep bass tones as long as they’re turned up.

As a child, his mother would lip-synch songs on the radio while they drove in the car. When he watched MTV’s “Yo MTV Raps” or “Head Bangers Ball,” his brothers, including younger brother Jeffrey, who attended Western Michigan University, would stand beside the TV and lip-synch so he knew what the songs were about.

“All those things I experience growing up, that’s what shaped me. They wanted to make sure that I was involved as well,” Forbes said.

Forbes said he and his friends were bullied. He was mocked for being deaf, but as with most things in his life, Forbes fought back.

“I had a pretty big mouth when I was growing up. … That was my way of defending myself and my friends. They (bullies) would be shocked I could talk.”

Forbes continues on his mission to make music more accessible to the deaf and hard of hearing communities. He’s planning to release his full-length, 13-track album, “Perfect Imperfections,” in June. He raps about the economy, love and his upbringing, among other topics.

“It’s something I’m very proud of. It’s been a long time in the making and something I’m excited to share with people,” he said. “I am the perfect imperfection … I took that imperfection and made it perfect.”

Higher standards in Singapore make new buildings accessible to all ages

from Asia One:

The Building and Construction Authority (BCA) is looking to make buildings in Singapore more accessible to users of all ages, as it reviews the current Accessibility Code.

To be completed by year's end, BCA hopes to incorporate principles of Universal Design (UD), such as the provision of nursing rooms and smaller toilets for children, in the enhanced code.

The Accessibility Code was introduced in 1990 and its mandatory requirements ensure that new buildings are constructed with accessibility features, like wheelchair and elderly-friendly facilities. It has been reviewed and enhanced thrice.

To improve the accessibility of existing buildings built before 1990, BCA has in place a 5-year $40 million Accessibility Fund (AF) to defray upgrading costs for owners of private sector buildings.

BCA announced today that it will extend the fund by another five years to 2016.

The fund co-pays up to 80 per cent of the cost for providing basic accessibility features to existing private buildings (except landed residential properties), subject to a cap of $300,000 per project.

Dr John Keung, CEO of BCA, said, "The ageing issue is very real not only in Singapore but in other cities as well.

"Everyone has a role to play in a community, whether you an architect, developer, building owner, public agency or a member of the public, we have to put ourselves in the shoes of the elderly, persons with mobility challenge, children, etc., as we work towards a 'City for all ages'."

For its current review of the Accessibility Code, BCA will work with various stakeholders, including the Singapore Institute of Architects (SIA), National University of Singapore (NUS) and voluntary welfare associations such as Handicaps Welfare Association (HWA) and Singapore Action Group of Elders (SAGE).

Wednesday, March 28, 2012

Thailand takes first steps on long road to inclusive mainstream education

from The Guardian in the UK. In the picture, Nuey, who has Down syndrome, was due to be sent to a remote boarding school until the Good Child Foundation intervened.

The strict hierarchy of Thai society means the drive for inclusive education needs strong commitment from both politicians and school leaders. In the past decade, there has been significant political progress in moves to implement a system that ensures children with disabilities have access to mainstream schools. However, with cultural barriers and resistance from some headteachers, the journey towards fully inclusive education has only just begun.

"Even when I offered to work for free, they still could not be convinced," explains Paul Lennon, a British ex-pat whose son was born with Down's syndrome. When he started looking for mainstream schools for his son in Chanthaburi province six years ago, headteachers in the local area refused him a place. Yet the National Educational Act, passed in 1999 – and accompanied by posters declaring: "Any disabled person who wishes to go to school can do so" – supposedly guaranteed all disabled children access to state education.

Some headteachers Lennon spoke to were amenable to the concept of inclusive education, but didn't feel they had the resources or training to implement it effectively. Others, with decades of experience of working in special schools, felt this institutional model was more suitable.

The education act did have some success. Between 2000 and 2004, the number of students with disabilities accessing education increased from 145,000 to 187,000. These students were taught at more than 18,000 inclusive schools, defined by the government as those that teach children with and without disabilities. There was further legislative progress with the Education Provision for People with Disabilities Act, passed in 2008, which made it illegal for schools to refuse entry to children with disabilities.

After much perseverance in securing a school place for his son, Lennon turned his attention to helping other children gain access to inclusive education by helping to set up the Good Child Foundation.

Nanthaporn (Nuey) Nanthamongkol, a six-year-old girl with Down's syndrome, was due to be sent to a distant boarding school before he intervened. "Without our work, Nuey would have been separated from her parents, sent to a school 80km away," says Lennon. "For kids with Down's syndrome, this is the worst possible thing you could do."

Nuey's story also highlights the cultural complexities of disability in Thailand. Sermsap Vorapanya, who is the author of A Model for Inclusive Schools in Thailand and has conducted a study on Thai inclusive education practices, explains: "It is critical to understand that most Buddhists [in Thailand] believe in reincarnation. Disability is widely viewed as a deserved failure to lead positive previous lives."

Theravada Buddhist teaching on rebirth led some families to report feeling shame about having a disabled child.

However, many headteachers in Vorapanya's study cited the Buddhist belief in the need for compassion as a reason they support inclusive education. Meanprasat private school in Bangkok, which combines western-style "child-centric" learning with a Buddhist ethos of moral ethics and regular meditation, is recognised as a national leader in integrated educational practices. In total, 130 of its 1,300 students are disabled. The school's philosophy is that children with disabilities "should have the chance to mix with society and be accepted by it". More than 5,000 teachers visit the school annually and attend workshops held to help spread good practice.

State schools, however, which have much less funding, have been described by Vorapanya as having "woefully insufficient resources" to implement inclusive education properly. Headteachers have complained that while schools can now access a minimum of 2,000 baht (approximately £41) funding for each disabled child, this is not enough to cover the required resources or training expenses. Another problem is that this funding can only be given if the child has been officially certified with a disability. Teachers have reported that some parents do not want this social stigma or are fearful that this certification will lead to discrimination.

Despite the significant challenges, Lennon is optimistic. "We are making great strides," he says. "If we keep doing good, the results will surely follow."

Chanthaburi province is moving away from the special schools model, placing students with moderate special needs in mainstream schools. Lennon helps place volunteers in local schools with children with Down's syndrome, and is working with local government to demonstrate how this practice can be replicated across the province.

Inclusive education remains in its early development stages in Thailand. But, as Vorapanya says, the country has "made a great beginning" to a monumental task.

Sunday, March 25, 2012

Enivironmentally friendly North Carolina apparel company staffs factory with blind employees

From The NY Times. In the picture, Anastasia Powell sewed T-shirts at Winston-Salem Industries for the Blind in North Carolina.

When Chris Yura, chief executive of the apparel company SustainU, was looking for a factory to produce 24,000 T-shirts, it was important that it be within 200 miles of where the fabric was made.

SustainU, based in Morgantown, W.Va., uses all-recycled materials to make clothing for colleges and universities. As its name indicates, it is committed to “social, economic and environmental sustainability,” Mr. Yura says. Lighter transportation demands would mean more environmental benefits and a faster turnaround time, not to mention reduced shipping costs.

The company found a factory in Winston-Salem, N.C., that seemed a logical choice. But it was no ordinary factory. Owned and operated by Winston-Salem Industries for the Blind, the factory has a work force that is blind or otherwise visually impaired.

To many, this may have been a deterrent, or at least raised doubts. “Even though you have the Americans With Disabilities Act, it’s still a challenge because people who are not familiar with the blind have misperceptions about what they can or can’t do, and it affects their decision to give people a chance,” said Kevin A. Lynch, chief executive of the nonprofit National Industries for the Blind.

The unemployment rate for blind adults of working age is nearly 70 percent — a number that has been stagnant for 30 years, Mr. Lynch said.

There may be a notion that hiring blind workers — or any disabled worker, for that matter — means spending more time, money and resources on training and equipment. But Mr. Yura said he found that there ultimately was no difference in either cost or quality between working with the Winston-Salem agency, an affiliate of the national group, and any other domestic manufacturer.

When blind people contact the agency, they often have very little work experience. They are trained to complete specific tasks and are set up with adaptive equipment to help them do their jobs. If they are making eyeglass lenses, for example, audio alerts let them know when the lenses have spent enough time in a fining, or polishing, machine. Or if they are assembling parachutes, tactile measurement guides, in the form of long wooden rails, help make sure that the lengths of ropes are all equal.

The training offers practical skills and an opportunity for upward mobility through certification classes. Workers with no experience receive minimum wage, while those with some experience are paid in line with workers doing similar jobs at other area factories, said Jeanne Wilkinson, vice president for business strategies at the Winston-Salem agency.

Anastasia Powell, a mother of three daughters who has been with the agency seven years, works in the factory’s T-shirt unit. Her job is to sew together shoulder seams. She received four months of training, and her sewing machine is specifically designed for her. A four- to six-inch metal strip is attached to the machine’s foot — where the needle contacts the fabric — to help line up the material.

“I gather my material at the corner, under my foot— the foot secures the material — and line up the guide,” Ms. Powell said. “The guide helps me make sure the seam is straight, and helps me cut off an accurate amount of material. After that, I complete the process on the second side of the shirt and send it over to the next operation.”

Ms. Powell, who has been completely blind since the age of 21, called the alteration to her machine “very minor.”

“The only difference between me and a sighted person is just that four- to six-inch strip of metal,” she said. “Nothing else had to be added.”

THE federal government has long known about the effectiveness of a blind work force. The National Industries for the Blind was established in 1938 as a result of a law signed by President Franklin D. Roosevelt that required federal agencies to buy supplies made by blind workers.

Ever since, the group and its agencies have been making products as varied as brooms and mattresses for the government and military. (In addition to clothing, the Winston-Salem agency produces eyeglasses for veterans and parachutes for soldiers in Afghanistan.)

But with the gradual withdrawal of American forces from war zones and the overall downsizing of the military, the national group hoped to do more business with private-sector companies in the future, Mr. Lynch said.

“I think there’s a growing interest out there in the general public for social responsibility, and I think that’s translating over to corporate responsibility,” he said. “There is also a real interest for things made in America.”

Showing that high-quality products can be made in America by people who are blind is a major selling point, he said.

Mr. Yura, who is already lining up another job with the Winston-Salem agency, is happy to endorse this message. And as for how those 24,000 T-shirts turned out? “You would never know whether the person who made the garment had full vision capability or not. It all looks the same. It’s the same product at the end of the day.”

Friday, March 23, 2012

Little people actors pressure Hollywood to abandon degrading images, find some success in new "Mirror, Mirror" film

from the Wall Street Journal. In the picture, the seven dwarves of 'Mirror Mirror': Mark Povinelli is fourth from left, Danny Woodburn is fifth, with the prince (Armie Hammer).

One word almost forced Danny Woodburn, the veteran character actor best known for playing Kramer's buddy Mickey on "Seinfeld," to abandon his job on the set of a possible Hollywood blockbuster. The movie was "Mirror Mirror," the part was one of Snow White's seven dwarves and the word in the script was "midget."

Over 20 years as an actor, Mr. Woodburn has developed certain rules for what he will and won't do in a movie. Like being lifted up as if he were a child. "I'm a 47-year-old man. There's no moment in my life that anybody needs to pick me up," he says. "I've actually literally put in the contract 'there's no biting on my character's part.'" He has no patience for the m-word, a term long displaced in favor of "little people." He sees things like this in almost every script he gets, and when he complains to casting directors, they often just say, "Next."

It is this "I've had it" attitude among Hollywood little people that has made them nervously await not one but two Snow White movies revisiting the iconic seven dwarves. "Mirror Mirror," due March 30, stars Julia Roberts as the evil queen, and "Snow White and the Huntsman" is scheduled for early summer. The 1937 animated Disney film "Snow White and the Seven Dwarves" may be a beloved classic, but it led to Munchkins, Oompa Loompas, Ewoks and Mini-Me, which have provided Hollywood jobs over the years but not exactly fond memories among this acting community.

Little people have long found work in the entertainment field, but in the last decade, from Peter Dinklage on HBO's "Game of Thrones" to TLC's "Little People, Big World," they've been counting on a greater measure of dignity for their characters and humor which isn't predicated on their size.

After passing his audition, Mr. Woodburn showed up at the "Mirror" set in Montreal and read an early draft of the script, which included the offending word and other irritants. "I had some issues with it," he recalls. "I found it played up some stereotypes that I didn't care for and were not the things I would normally do. I immediately made that clear, and they assured me things were going to be different."

And they were, to Mr. Woodburn's pleasant surprise. Not only did the filmmakers not fire him, they rewrote the script per his demand. Even better, it turned out producers Kevin Misher and Bernie Goldmann envisioned fully formed roles for the seven dwarves from the beginning, and they convened a sort of ongoing focus group, asking Mr. Woodburn and his colleagues what they would and wouldn't find funny. The dwarves are "the heart of the movie," Mr. Goldmann says, thieves and outcasts who identify with Snow White (Lily Collins) after the queen orders her toadie Brighton (Nathan Lane) to take her to the forest and kill her. In one scene, Prince Andrew (Armie Hammer) mocks the dwarves: "You can't expect me to fight you—you're minuscule!" Responds one: "That's the best you got?" But "midget" was nowhere in the redone script.

Mr. Misher says the filmmakers took elaborate steps to listen to their little-people actors. They were the first cast members to be flown to Montreal, and weren't told which parts they'd be playing. Instead, the directors let Mr. Woodburn and the others hang out together for weeks, injecting their own personalities into the parts. "We all play not so much on our size as on our distinct personality. We just happen to be smaller," says Mr. Woodburn, who plays Grimm, who mentors Snow White and boosts her confidence.

It took Mr. Dinklage in 2003's critically acclaimed indie film "The Station Agent," in part, to show filmmakers they can cast little people in roles that aren't built around their size. (In Mr. Dinklage's Golden Globes acceptance speech for best supporting actor in January, the "Game of Thrones" star somberly called attention to actor Martin Henderson, a British little person who may be confined to a wheelchair after a stranger picked him up outside a pub and threw him down the street.)

"The roles the last three years seem to be getting better and better," says Mark Povinelli, who acts alongside Mr. Woodburn in "Mirror" and played Kinko in "Water for Elephants." "It's a lot harder for writers to make the pugnacious, randy dwarf who kicks somebody's shins and looks up somebody's skirt when people saw the amazing stuff Peter Dinklage did on TV last night."

No one would think a little person in mobbed-up 1920s Atlantic City would have an easy time of it, but Nic Novicki, the actor and stand-up comic who plays Carl in HBO's "Boardwalk Empire," says his character has depth and humor. "Carl uses his size to his advantage by winning people over with vaudeville-style jokes," he says. "When Steve Buscemi's character asks Carl for a few bucks he says, 'I'd like to, but I'm a little short.' The people around him and the audience viewing at home never laugh at him, but with him, because he's always in on the joke."

Warwick Davis had the satirical idea for HBO's "Life's Too Short," a deadpan, "The Office"-style faux-documentary series. On the show and in reality, he played an Ewok in "Return of the Jedi" and starred in 1988's Val Kilmer flop "Willow." Flashing a million-dollar smile, he must stand on a chair to pose with a fan at a sci-fi convention; ask a belligerent stranger to reach a doorbell that's too high up; and allow an over-the-top, enthusiastically racist Johnny Depp, researching a little-person role, to taunt him and put him in the toilet.

Little people actors also don't like it when filmmakers pre-empt roles meant for them. The "Lord of the Rings" series—and the coming "The Hobbit"—employed regular-size actors as hobbits and dwarves and used special effects to make them appear small. In Tim Burton's 2005 film version of "Charlie and the Chocolate Factory," the director hired just one little person, Deep Roy, then reproduced him numerous times to make him seem like a platoon of Oompa Loompas. (Mr. Burton's agent did not respond to interview requests.) "Snow White and the Huntsman," a more grown-up version of the story, uses computer-generated graphics to shrink Ray Winstone, Ian McShane, Bob Hoskins and others into the seven dwarves on screen.

Veteran actress Kiruna Stamell, who plays Mr. Davis's love interest on "Life's Too Short," has no problem with "Lord of the Rings," since the characters are mythical. She says she objects to directors compacting regular-size actors into body types that approximate achondroplasia, the medical condition that causes dwarfism. On her blog, she wrote, "I think it's terrible and I will feel this way until someone offers me a gig where I film an entire movie as a tall woman. And she'd better be the bloody lead and get to wear all the cool dresses!"

Rupert Sanders, director of "Huntsman," was unavailable to discuss the casting decisions, but the film's executive producer, Palak Patel, says hiring character actors like Messrs. McShane, Winstone and Hoskins in the seven-dwarves roles was a no-brainer. Mr. Sanders "felt they were perfect and he couldn't find anyone else better at the time," says Mr. Patel, also a producer for 2013's "Oz: The Great and Powerful," which employs little-people actors. "The only thing we discuss when we're casting the film is a) who's available right now for our dates; and b) who are the best actors out there to pull off these performances."

Fans of the classic Disney cartoon may be disappointed to learn that nobody in either movie is named Grumpy, Dopey or Doc. (One big reason: Disney owns the rights to those characters.) But it's a relief to little people in Hollywood, who are eager to redefine the 75-year-old archetypes.

"I've never allowed myself to believe, growing up, that an animated character with a long beard who works in a mine and sings songs all day and lives in the forest by choice has anything to do with me," says Mr. Povinelli, whose "Mirror Mirror" character is called Half-Pint. "The fact that they're the same size is a fact of life, but doesn't lead me to think I'm in any way related to them."

Temple University website preserves history of fight for rights for intellectually disabled people

From Temple University:

In the 1950s, Eleanor Elkin adopted a baby boy, Richard, whom -- it soon became clear -- had intellectual disabilities. It was a much different era then and the adoption agency offered to take him back.

“But no, I said, you don't send babies back; you don't turn them in like cars. We had had him then probably about two weeks and by then he was my son … there was no doubt …and no way were they going to get him back,” Elkin recalled.

The story of Elkin, who is 95 and a leader in the Intellectual Disability Movement in Pennsylvania and across the country, is now documented and preserved through Visionary Voices, a new site that was recently launched by Temple’s Institute on Disabilities (IOD).

Visionary Voices came to be about a year ago when Celia Feinstein, co-executive director of the Institute on Disabilities, and a group of colleagues became concerned that the stories and experiences of Elkin and others like her would be lost if they weren’t soon captured. Their field now faces budget cuts that threaten the hard-fought freedoms for people with intellectual disabilities.

“If people don’t know the history of the struggle, we are destined to relive it,” said Feinstein.

The creation of the website came at the perfect time, as the IOD had also just received the personal papers of Dennis Haggerty, a Philadelphia-area attorney, respected disability rights advocate and parent of a child with an intellectual disability. Haggerty’s papers, video interviews with Elkin and others and historical photographs comprise the rich content of the site, which is a work in progress. The Haggerty papers are now housed in the Temple University Libraries’ Urban Archives

Three more individuals are in line to donate their papers, and 50 people will be interviewed for the site, which is designed to give scholars, people with disabilities, students of all ages, the public, legislators and policy makers the history of the movement going back to the 1960s.

It’s fitting that the site, which appears to be the only one of its kind, was created by a Pennsylvania-based university. Pennsylvania played a key role in the creation of public policy that has changed the way people with intellectual disabilities live in the community, said Feinstein.

When Elkin began her work in the 1950s, there were no services, no education and no early intervention for children with intellectual disabilities.

“The expectation was either you institutionalized your child, which most people were advised to do, or did what you could at home,” said Feinstein.

Elkin and other parents fought for access to schools, which led to the Right to Education Case, or PARC v. The Commonwealth of Pennsylvania. The resulting PARC Consent Decree opened Pennsylvania's schools to children with disabilities.

Other hard-won battles that are chronicled on the site include deinstitutionalization and the movement toward self-determination for individuals with disabilities.

“There is much to be learned from a generation of advocates who risked so much to ensure the safety and freedom of people with disabilities,” said Feinstein. "If their memories and stories are not preserved, they will disappear forever."

New York state report faults care for people with disabilities

From The NY Times. Pictured is the Sunmount Developmental Center in New York.

ALBANY, N.Y. — Nearly 300,000 disabled and mentally ill New Yorkers face a “needless risk of harm” because of conflicting regulations, a lack of oversight and even disagreements over what constitutes abuse, according to a draft state report obtained by The New York Times.

In 2010, the number of abuse accusations at large institutions overseen by the State Office for People With Developmental Disabilities outnumbered the beds in those facilities — a sign of trouble in buildings where many of the state’s most vulnerable residents are housed, and where the state has repeatedly had trouble with abusive employees and unexplained injuries and deaths among residents, according to the report.

The report was commissioned by Gov. Andrew M. Cuomo in response to a Times investigation last year into problems of abuse, neglect and fraud in state homes and institutions for the developmentally disabled. A draft of the report began circulating in October, but has not yet been released to the public; people frustrated by the delay separately provided to The Times an executive summary and a bound copy drafted in December.

Problems were found at all six state agencies that provide residential service to children and adults with an array of disabilities, mental illnesses or other issues that qualify them to receive specialized care by the state.

According to the report, a regulatory maze has complicated and in some cases constrained the state’s response to claims of abuse. At one agency, the police are summoned if “there is reason to believe that a crime has been committed,” while another agency does so only if a potential felony has been committed. A third agency turns to law enforcement only if a local district attorney has “indicated a prior interest,” the report said.

The Cuomo administration has expressed concern about issues identified in The Times and addressed by the report. Over the past year, the governor has forced the resignations of the commissioner of the Office for People With Developmental Disabilities and the top official at the State Commission on Quality of Care and Advocacy for Persons With Disabilities, and he has moved to fire 130 employees involved in accusations of serious episodes of abuse or neglect.

The administration has also taken a number of steps to shore up oversight and care of the developmentally disabled, putting in place new rules for drug testing and criminal background checks of staff members who work with the vulnerable.

“The draft report was the subject of a cabinet and press briefing in October, and we are currently working on a transformational reform plan based on the report that will be announced soon,” said Richard Bamberger, the governor’s communications director.

But some advocates and lawmakers have been frustrated with what they see as the slow pace of progress. Michael Carey, an advocate for the developmentally disabled whose son with autism died in state care in 2007, said he was concerned that the governor was waiting to address the issue until after legislative budget negotiations, which could make it more difficult to find money for new programs.

“It’s gross negligence that that report has not come out, and it’s beyond frustrating,” Mr. Carey said, adding, “The reforms to date are baby steps towards monster problems.” And Senator Roy J. McDonald, the chairman of the State Senate’s mental health committee, sent a letter this month to the governor urging him to turn over the report “so that we can begin working towards enacting long overdue protections and safeguards.”

The Times last year identified numerous problems with the state’s care for the developmentally disabled: only 5 percent of abuse accusations were forwarded to law enforcement, and employees who physically or sexually abused the disabled were often transferred among group homes instead of being fired.

Ten percent of deaths of the developmentally disabled in state care were listed in a state database as having occurring from unknown causes, suggesting widespread failures in efforts to determine why people die in state care.

At the same time, executives at some nonprofit organizations hired by the state to care for the disabled have been earning seven-figure annual compensation packages and taking a wide range of Medicaid-financed perks for themselves and their friends and families.

The state report, a 105-page document called “The Measure of a Society: Protection of Vulnerable Persons in Residential Facilities Against Abuse and Neglect,” critiques the practices at six state agencies that oversee residential programs for vulnerable populations, at an annual cost of $17.9 billion. The report’s principal author was Clarence Sundram, who was hired by Mr. Cuomo a year ago as a special adviser on vulnerable people. Mr. Sundram had been named by Gov. Hugh L. Carey to lead the Commission on Quality of Care, and he ran the commission for two decades until he left amid a disagreement with the administration of Gov. George E. Pataki.

In his report, Mr. Sundram found inconsistent data about accusations of abuse and neglect at state-run facilities. Some agencies train their investigators; others do not. Evidentiary standards vary. And definitions of abuse or neglect vary depending upon which agency has oversight.

The report found that residential schools run by the Education Department did not track abuse claims, while the State Health Department had “no reliable data” for accusations at its homes for mentally ill adults. At the large institutions overseen by the Office for People With Developmental Disabilities, the report found 119.68 abuse claims for every 100 beds.

The homes monitored by the Health Department have been a particular concern for a decade, since a series of articles in The Times in 2002 called attention to abuse there. Nonetheless, the report found, the department has few standards for investigating its homes: the agency’s regulations “do not directly address an operator’s responsibility to investigate incidents or allegations of abuse,” the report concluded.

The Office of Children and Family Services also has few standards to determine when and how to investigate abuse accusations at some facilities. And the Education Department does little to oversee its programs for the disabled, which include two residential schools — one for the deaf and one for the blind — with a total of 200 beds, as well as educational programs at nonprofit residential schools serving 2,500 students.

The department does not require schools to have incident-reporting or investigation policies, and does not require abuse and neglect investigations, relying on the Office of Children and Family Services to conduct child-abuse inquiries.

The Education Department, which reports to the State Board of Regents and not to the governor, said the Sundram report highlighted “the need for systemwide reform”

The department “supports change that would enhance protections for vulnerable children and adults in residential settings across New York State and in out-of-state facilities,” said its spokesman, Tom Dunn.

The report recommended several changes to state laws and regulations in an effort to prevent and better respond to abuse of the vulnerable. But it continues to rely to a large extent on self-policing, which could be a point of criticism among advocates.

“These human services systems did not arrive overnight to the point at which they find themselves, nor will they get to a dramatically better level of performance immediately,” the report said. “But there is a need to begin the process of reform with a sense of urgency.”

One proposed law would require the establishment of a 24-hour hot line to report abuse of adults in state care — the state already has a child-abuse hot line — as well as the creation of a single entity to review abuse accusations regardless of the agency involved. Another proposed law would bar people with convictions for violent felonies and sex crimes from jobs with state agencies, or with state-contracted nonprofits groups, that provide care for the vulnerable.

Because the current charge often filed against those accused of abuse — endangering the welfare of an incompetent or physically disabled person — is a misdemeanor, the report also proposes creating new offenses with tougher penalties to prosecute such crimes.

During arbitration proceedings against employees accused of abuse, a representative of the abused vulnerable person should also be present, the report suggests. And, the report says, the state should follow through with a promise to establish specific penalties for offenses by abusive employees, a concept that the Civil Service Employees Association agreed to during labor negotiations months ago.

Wednesday, March 21, 2012

Self advocates with Down syndrome tell of their life experiences at World Down Syndrome Day at United Nations conference

By Beth Haller
Media dis&dat

World Down Syndrome Day at a United Nations conference March 21 created a wonderful venue for people with Down syndrome to tell of their experiences as self advocates.

One self advocate, Shona Robertson of Australia (pictured with her mother, Penny Robertson, Chair of Down Syndrome International), discussed her educational life. She joked that her mother always said she began school at one week old because she participated in an early intervention program.

Robertson attended a mainstream elementary school, where her classroom had a support worker for her once a week.

“I was happy at my school, and my brother spent time trying to look after me,” she said.

“We used to walk home together but I always wanted to stop and swing. I was a swinger,” Robertson said with a laugh.

At age 13, Robertson and her family moved to Indonesia. For the first few months there, she got a taste of home tutoring and said she didn’t like it. “I missed my friends and playing,” she said.

But then her mother established a school that accepted all children.

“It was a fun school because we went on lots of excursions,” she said, giving examples of visits to volcanoes and rides on elephants.

Having completed her education, Robertson works as an administrative assistant for the Gold Coast City Council in Australia. She enjoys working out at the gym and taking care of her dog, Ollie. She is also engaged to be married in October.

New York self advocate Jason Kingsley, author of the book Count Us In: Growing up with Down syndrome, reminded the audience that people with Down syndrome “have the same hopes, dreams, and goals as anyone else.”

Kingsley emphasized that people with Down syndrome can accomplish much in their lives.

“We just need opportunities to learn and grow and experience a lot of things,” he said.

Another book Change the way you speak and I will change the way I listen from Carpe Diem Association, Brazil, was launched at the conference. It is an accessibility book written in English and Portuguese by people with intellectual disabilities.

The conference also had a media panel in which self advocate self-advocate Tathiana Heiderich told how she had inspired a character with Down syndrome in a popular Brazilian comic.

Heiderich hosts a show called Being Different in The Netherlands. Her family helps her create the show, which she says tries to be entertaining and informative. She uses Facebook to publish her work.

“We can work, date, get married, and make our own choices,” she said. “We still need the media’s help because there is still much prejudice.”

The media panel also discussed the attitude change that occurred when a Brazilian soap opera included a character with Down syndrome.

The soap opera "Paginas da Vida" (Pages of Life) added a storyline and character with Down syndrome, Clarinha. She is played by young actor Joana Mocarzel, who has become so popular in Brazil that a doll has been based on her. This child character changed attitudes about Down syndrome in Brazil from negative to positive, according to Patricia Almeida, the organizer of World Down Syndrome Day.

Other panels at the UN conference discussed the UN Convention on the Rights of Persons with Disabilities (CRPD) and Inclusion - The Importance of Global Coordination Efforts to Promote the Convention, Human Rights and Political Participation of Self-Advocates, Changing Society Attitudes - From Neglect to Protagonist and Living in the Community, and Care and Treatment – Improving Quality of Life.

The conference also premiered the video, “Let us in - I want to learn!” Presented by Down Syndrome International, the global video was created in partnership with 68 countries for World Down Syndrome Day 2012.

Saturday, March 17, 2012

WGBH Boston’s MEDAL QUEST follows American athletes as they train for, compete in 2012 LONDON Paralympics games


BOSTON -- Every two years, the world’s best athletes gather to compete in the world’s toughest games: The Paralympics. Called “the Olympics no one knows,” the Paralympics bring together top athletes with physical disabilities in thrilling matches on the field, in the pool, on bicycles, and in wheelchairs. This year the Games will be held in London, August 29 - September 9.

WGBH Boston announced March 7 the launch of MEDAL QUEST: American Athletes and the Paralympic Games (, an original, multi-platform digital project that will offer an unprecedented look into these high-stakes Games. Produced by WGBH Boston and presented under agreement with the United States Olympic Committee and the International Paralympics Committee, MEDAL QUEST will showcase these remarkable competitions at the highest level, while following America’s elite athletes as they train for and compete in the London 2012 Paralympic Games.

“These competitors battle for the same gold, silver, and bronze medals as Olympic athletes, in the same stadiums, in the presence of the same flaming torch,” says WGBH Executive Producer Judith Vecchione. “Some of these athletes race or play tennis and basketball in wheelchairs. Others play goalball, a kind of dodgeball for the blind, or they swim with missing limbs or neurological impairments. They are powerful, highly trained, proud to represent their countries…and they are physically disabled.”

Through a comprehensive website, and a combined presence via multiple social media platforms including Facebook Twitter, PBS’s video player, and blog coverage, MEDAL QUEST will ask its audiences a key question: “What makes a champion?” Is it skill, training, technology? Is it support from family and friends? Or is it something more?

The MEDAL QUEST project will allow audiences to find their own answers as they engage directly with America’s Paralympic athletes, witnessing firsthand the talent, emotions, and drive behind their battles and triumphs, wins and heartbreaks.

Launching today and continuing with new videos through October, this multi-tiered Web series will look at Paralympic history and profile the next generation of champions. It also will present the newest group to join the Paralympic movement: wounded “warrior athletes” from the Iraq and Afghanistan wars. Each month, MEDAL QUEST will spotlight four athletes, featuring bios, photography, and blog entries written by the athletes themselves. Additionally, the project will offer videos that will introduce rival competitors, tools of the trade, and great athletes and moments from past competitions.

While the Games are a highly anticipated and widely followed event in countries abroad, MEDAL QUEST will offer American audiences their first in-depth look at the Games. Fans will learn about the rules and best players in the 19 summer Paralympic sports, including track and field, equestrian, judo, goalball, and much more. Additionally, features such as “Ask the Athlete,” and “Hometown Heroes” will allow users to interact directly with athletes as they train and compete in the 2012 games, kicking off in London on August 29, 2012.

For opportunities to follow and connect with some of the world’s most elite athletes, and for an up-close, in-depth look at the Paralympic Games, visit MEDAL QUEST at

Friday, March 16, 2012

'Ashley treatment' to limit growth of disabled children on rise amid concerns from disability rights groups

From The Guardian:

A controversial procedure to limit the growth of severely disabled children to keep them forever small – which ignited a fiery debate about the limits of medical intervention when it was first revealed five years ago – has begun to spread among families in America, Europe and beyond.

The Guardian has learned that at least 12 other families have carried out or are in the process of undergoing such medical therapies. The total number of children who have been administered with hormones to keep them small may have reached more than 100 and interest among families extended into the thousands.

The Guardian is in contact with two of the new families, both involving severely disabled children who were adopted. They include the world's first known example of a boy who has been given hormone therapy that keep him child-sized for the rest of his life.

Five years ago details first emerged of Ashley, a nine-year-old girl living near Seattle (pictured in 2007, 2011). She was born with developmental disabilities that meant she was unable to talk or walk, and continues to have the cognitive ability of an infant.

Ashley's parents, together with doctors at Seattle children's hospital, devised a cocktail of medical interventions to keep her from growing any further. Dubbed the "Ashley treatment", the procedure was born out of the conviction that Ashley's quality of life would improve as it would spare her physical discomfort and pain.

The core of the treatment was hormone therapy: high estrogen doses to bring forward the closure of the growth plates in her bones, which would in turn stop her growing. In addition, surgical interventions included removal of her nascent breast buds to avoid the discomfort of fully-formed breasts later in life, and a hysterectomy to avoid menstruation.

In an email exchange with the Guardian published today, Ashley's father, who has kept a blog on his daughter's condition, says that five years later he remains convinced that the intervention has improved his daughter's life. Going under the name AD (Ashley's dad) to preserve his family's anonymity, he says "the Ashley treatment has made her far more likely to be comfortable, healthy and happy. Given the limitations imposed by her medical condition, her life is as good as we can possibly make it."

He also reveals that after Ashley's medical treatment was made public – sparking a global media firestorm and prompting outrage from several disability groups – many other families with severely disabled children contacted him for advice on how to follow his example. AD says that a private discussion group, called "pillow angels quality of life support group", was set up between him and six other families who have all by now completed the course of hormone doses – and in some cases surgery – that in effect freeze-frames their children at a small size.

There are "at least as many who are in progress" with the treatment, AD says, adding that in his calculation ten times as many have gone ahead under their own initiative.

Details of the six families who have conducted the medical interventions are sketchy, given the anonymity upon which they insist. It is known that four of the families live in the US, one in Europe and one in Oceania. Two of the six children are boys.

Curt Decker, director of the National Disability Rights Network, says he believed that thousands of families were actively exploring the possibility of practising the Ashley treatment. His group, which provides legal services to disabled people across the US, is preparing a report to be published in April that will call on Congress, states and individual hospitals to introduce new laws to ban growth attenuation treatment for disabled children.

"This is a violation of the civil rights of individuals, and it should be prohibited," Decker said. "Parents have rationalised that this is an OK thing to do, but it treats people as though they have no worth and that's a slippery slope that could end with the idea that people with disabilities don't have to be kept alive or integrated in society."

Silvia Yee, a lawyer with the Disability Rights Education & Defense Fund that is run jointly by disabled people themselves and parents of children with disabilities, said: "This is what we were fearing. It is becoming just one more choice on the menu of possibilities – a medical operation that will change a person's life. Who has the right to decide to change an individual into a different entity?"

The mothers of two of the children who have followed Ashley's example insist that they made the decision out of their child's best interests. Tom, who is now 12, is the first known boy to be given the intervention. He was seven when he had the procedure.

Tom's parents adopted him from Vietnam when he was a baby. They live in a European country, the identity of which the Guardian knows but has agreed not to disclose.

Tom, which is not his real name, has severe cerebral palsy and epilepsy and cannot sit, talk, walk or eat. His mother said she wanted growth attenuation therapy for him because he was becoming too big for her and her husband to give him the care he needs.

She rejects the argument that the therapy was a form of disrespect for her child: "It's the opposite. It will help Tom a lot and I will be grateful for the rest of my life for what [Ashley's family] did."

Tom's mother said that she was unsure whether the hormone therapy he underwent to keep him small was granted any official approval. "Our doctor told me that there is still no official protocol; cases are assessed one by one."

The other family in contact with the Guardian is that of Erica (also not her real name) who lives in the upper midwest of the US. Erica, 14, is also adopted, and was given a hysterectomy and hormone therapy based on the model of the "Ashley treatment" by doctors at the University of Minnesota. She began the treatment when she was 10.

Erica's mother said: "People don't understand we are talking about a small percentage – just one percent of the disabled population with disabilities like Erica's – who would be candidates for this treatment … People think you are playing God or messing with nature. But our loving God wouldn't want Erica to be in pain. She has a right to a happy life."

Both Tom and Erica's stories will be told by the Guardian in full on Friday.

In his email exchange with the Guardian, Ashley's father counters the criticism levelled at him by disability rights campaigners. In his opinion, "the treatment makes Ashley more dignified by providing her with a better quality of life. Depriving her of the treatment's benefits would be taking away from her human rights."

But he says that the controversy aroused around the Ashley treatment has discouraged many hospitals and doctors from becoming involved. Some parents with whom he is in touch have had to cross US state or even international borders to find willing medical participants.

In Washington state, where his family lives, the Washington Protection & Advocacy System investigated the therapy and concluded in a 38-page report published in May 2007 that Ashley's rights had been violated by the hormone doses and removal of her uterus and breast buds. To have gone ahead without a prior court order was a violation of the US constitution and Washington law, it found.

On the back of the report, the hospital that had carried out the procedures promised never to do so again without court permission.

Ashley's father says that he had been given legal advice to the contrary, and adds that the erection of judicial barriers only succeeded in harming the children. "The impact is that many families are not able to provide the treatment, so severely disabled children are deprived and the treatment becomes exclusive to the wealthy and powerful," he says.

With the revelation that many other families have now followed AD's example and gone ahead with the controversial therapy, the ethical and legal debate that surrounds it can only intensify.

Wednesday, March 14, 2012

Tribes Star Russell Harvard on his Deaf heritage, joining new off-Broadway family

From Russell Harvard on

About the Author:
Russell Harvard (pictured) may be making his off-Broadway debut in Tribes at the Barrow Street Theatre, but this talented New York newcomer is no show-biz rookie. On film, Harvard is best known for his portrayal of the adult H.W. Plainview in There Will Be Blood and wrestler Matt Hamill in The Hammer. In Tribes, Harvard stars as Billy, a deaf twenty-something who struggles to be heard in an outspoken hearing family. When Billy learns sign language and finally finds his voice, his relationship with his self-involved parents and siblings is turned on its head. Below, Harvard writes of his experiences as a deaf actor, the limitations of American Sign Language, and his idea for a new way to communicate with (or play pranks on!) his hearing friends.

I first read Nina Raine’s Tribes several months ago and was drawn to the character of Billy for many reasons. We are vastly different people, but we have a common and familiar foundation. Billy was born deaf, and so was I—but unlike Billy, I come from a deaf family. My mother, like Billy, was born deaf and raised by a hearing family. And similarly, my mother didn’t learn American Sign Language (ASL) until the age of six, when my grandmother enrolled her in the Texas School for the Deaf (TSD). It was there that she met my father, who was born to deaf parents. They both graduated from TSD and I’m proud to say I’m the third deaf generation, as well as the third generation of TSD alumni in my family. My mother’s story is a lot like Billy’s—because of her personal history, I understand him, who he is, and who he hopes to become.

This understanding of Billy’s background allowed me to fall into character surprisingly smoothly: I became Billy in an instant on the first day of rehearsal. Those first rehearsals were slightly frustrating because I crave to absorb and understand everything that is happening in the room, but there were so many overlapping conversations that it was hard to pick everything up.

That first rehearsal experience was reminiscent of a surreal obstacle I faced in 2004 when I traveled to Amsterdam with a deaf performing troupe from Washington, D.C. We were invited to a huge deaf international party at a nightclub 40 kilometers away. Two co-workers and I decided to attend the party, while the rest decided to hit the hay—but I didn’t know what I was about to get myself into. When we entered the club, I saw that signing was the mode of communication most people were using, but I couldn’t understand what anyone was saying. There were as many as five different languages in sign happening in front of my eyes. My co-workers disappeared into the crowd and I found myself frustrated that I couldn’t understand what people were saying.

Luckily, I ran into a friend from Gallaudet University, and he translated for me. Later that night, he told me that to communicate more efficiently I should learn International Signs. When I returned to school the following semester, I registered for a Visual Gesture Communication course. The class opened my eyes to the fact that communication is possible through gesture and that a specific language isn’t necessary. Go figure!

The skills I acquired in the visual gesture course have helped me navigate situations in which communication was an obstacle, which came into play throughout the rehearsal process for Tribes. Now, it would be far out if my Android phone had an app that could translate English speaking to English text! That would revolutionize my life. I’d like to eavesdrop on a conversation in the subway or listen in on my fellow cast members in the dressing room next to mine.

Everyone at the Barrow Street Theatre has made me feel very welcome, and life in NYC is rad! My co-stars and stage crew members are learning ASL, and it brings me a great deal of joy to see them simply trying to sign (speak) my language. I am grateful to the writer, director and producers for giving me an opportunity to show my work in this unforgettable production.

World 'split' over Paralympic-Olympic Games merger

from BBC:

People from 19 nations are split on whether the Paralympics should be integrated into the Olympic Games, according to a global poll of 10,294 people for the BBC World Service.

Some 47% of those polled were in favour of merging both Games, while 43% said the Paralympics should stay separate.

It is a controversial issue within the Paralympic movement with some athletes concerned the Games would "disappear".

Eight countries wanted to merge the Games while six wanted them separate.

The remaining five countries were divided on the issue.

Many of the countries with the most impressive medal hauls to date wanted to keep the Games split; they included China (67% separate, 27% integrated), the US (64%, 29%), and Australia (54%, 42%).

However Germany, which also does well at the Olympics, broke away from this with 46% wanting to keep the Games separate while 45% wanted them to merge.

Nations preferring to merge the Games included France (26% separate, 70% integrated), Chile (19%, 75%), Egypt (39%, 57%), and India (26%, 47%).

This year's Olympics host, the UK, was divided over combining the Games, with 50% wanting them separate and 46% keen for a merger.

Polling was conducted for BBC World Service by the international polling firm GlobeScan and its research partners in each country. In five of the 19 countries, the sample was limited to major urban areas.

GlobeScan Chairman Doug Miller said: "The poll results suggest that integrating the Olympics and the Paralympics would be a controversial decision, with most of the nations who have won the lion's share of gold medals over recent years opposed to the change."

Baroness Tanni Grey Thompson said in December she was against a merger between both sets of Games.

The former Paralympic medal winner said the Paralympics would "disappear off the face of the earth" if a merger with the Olympic Games took place.

"That way we wouldn't have an opportunity to showcase the vast majority of sports like we do now," she said.

Grey Thompson, Britain's most successful Paralympian with 11 gold medals, added: "There is not a city in the world that could host a Games the size of the two combined.

"I'd rather invest time and effort in making sure that the Paralympics can be as parallel to the Olympics as possible."

A poll in January suggested that a majority of people in 18 out of 21 countries felt that the way their team performed at the Olympics was important to their national pride.

People in developing and middle-income countries get the greatest lift from Olympic achievements, according to the BBC Global Poll.

U.S. Department of Defense says amputations reached wartime high in 2011

from Military Times:

The number of U.S. troops who lost limbs reached a wartime high in 2011, according to data from the Defense Department, but along with the spike came advances in medicine and technology that have enabled troops with devastating wounds to survive and, in some cases, return to duty.

In 2011, 240 deployed troops had to have at least an arm or a leg amputated, compared with 205 in 2007, the height of the surge in Iraq, according to data published by the Armed Forces Health Surveillance Center.

The increase in 2011 coincides with the surge of troops in Afghanistan, who often dismount on foot patrols in the country’s austere and rugged terrain.

Troops wounded in Afghanistan also have suffered the loss of multiple limbs — of the 187 service members with major limb loss in 2010, 72 of them lost more than one limb, according to the report from the Army’s Dismounted Complex Blast Injury Task Force.

That’s an increase from 2009, when of the 86 troops with major limb loss, 23 had multiple amputations, according to the task force’s report.

The “most dramatic changes” in the wounds coming out of Afghanistan were the increased number of troops with above-the-knee amputation of both legs, triple and quadruple amputations, and the associated genital injuries, the task force reported.

The doctors and specialists who care for wounded warriors back home have seen a spike in amputees, but they also have been capitalizing on the latest research and technology to care for these wounded warriors, said John Shero, director of the Defense Department-Veterans Affairs Extremity Trauma and Amputation Center of Excellence.

The center, which was established by law in the 2009 Defense Authorization Act, is the lead DoD and VA organization for policy, direction and oversight of the care and study of amputations and extremity injuries.

“We want our wounded warriors to have the very best that we can get them,” Shero said. “The very best technology, the very best care, the very best surgeons, to ensure they can get to the very best state of rehabilitation and return that they possibly can.”

Lt. Col. (Dr.) Donald Gajewski, an orthopedic surgeon and director of the Center for the Intrepid at Fort Sam Houston, Texas, agreed.

“With this increase in patients, now we have a population of double and triple amputees, which is catastrophic, and each story is as heartbreaking as you can imagine, but our charge is to drive ourselves to see how we can … make their lives better,” he said. “These guys who have catastrophic injuries, they push us to make them better.”

The Center for the Intrepid is one of three DoD and seven VA amputee centers that fall under Shero’s organization, including the Comprehensive Combat and Complex Casualty Care Center at Naval Medical Center San Diego, and the Military Advanced Training Center at Walter Reed National Military Medical Center in Bethesda, Md.

“We’re providing world-class care to wounded warriors, and they are able to benefit from technology that doesn’t exist elsewhere in the world,” Shero said.
Advanced prosthetics

For example, the Army is testing a cutting-edge prosthetic known as the X3 that is currently not available to anyone else, Shero said. Made by German company Otto Bock, the X3 is the latest generation of the X2, which is a state-of-the-art, military-tailored prosthetic leg and knee that’s powered by a microprocessor and designed for above-the-knee amputees.

“Four or five years ago, when the first microprocessor leg hit, we thought it was just amazing, and it was, and now we’ve developed two generations beyond that with the X2, and now the X3 is even more advanced,” Shero said. “The technology is just phenomenal, and the X3 is not available to anyone else in the world at this point in time other than to our heroes.”

The X2 and X3 evolved from the C-leg, which uses hydraulic cylinders to control the flexing of the knee.

“The C-leg became pretty standard practice for us, … and it allowed you to descend stairs and ramps without fear of the knee buckling under you,” said John Fergason, the chief prosthetist at the Center for the Intrepid.

The C-leg costs the military between $18,000 and $20,000, he said.

The X2 is more rugged than the C-leg, and it was designed to meet certain military criteria, including the ability for the user to increase his activity in various terrains, Fergason said.

The X2 also allows users to walk up and down stairs with a normal gait, he said.

“It’s become my knee of choice for sure,” Fergason said. “In a traditional prosthetic, it’s very difficult to go up stairs in a natural manner. Normally you lead with the good leg and use a nonbending prosthetic to go up the stairs to keep yourself safe. Now with the X2, you can use your body power to extend your knee and push yourself up the stairs like you would an anatomical knee.”

The X2, which costs the military about $32,000 each, also allows the user to traverse obstacles, Fergason said.

The key advantage of the X3 is it is waterproof up to one meter for 10 minutes, he said.

“That’s plenty of time to get you out of a wet situation,” he said. “It doesn’t mean you go float down the river with your knee submerged. It’s meant for incidental water immersion. Up until now, submerging your knee was as absurd as jumping into the pool with your cellphone on your hip.”

As of March 1, the Army is assessing and collecting feedback on the brand-new X3, Fergason said. He expects the prosthetic will go into production soon.

Shero and Gajewski said.

“We have a whole bunch of research initiatives for extremity trauma and limb salvage and amputation care,” Shero said. “We’re not doing research that doesn’t have an application. We’re doing research to improve care for wounded warriors.”

One of the key advancements made in limb salvage is the Intrepid Dynamic Exoskeletal Orthosis, or IDEO, which is a custom-made, custom-fitted carbon fiber device that’s powered by the inert energy of the carbon fiber and the user’s movements.

Designed and created at the CFI, the IDEO helps propel a service member’s damaged leg, enabling him to walk and run, and giving hope to troops who are frustrated by the lack of progress with their damaged leg.

“We have those talks with patients all the time,” Gajewski said. “There are limbs that are salvageable, but it’s hard to have that conversation with the patient. Undergoing limb salvage is a long, long process, and some of the guys, before we had an option like the IDEO, they’d get frustrated and decide to amputate.”

So far, the CFI has fitted more than 200 IDEOs, he said.

The Army and military continue to work hard to give wounded warriors the best possible care, Gajewski said.

“There are very few good things that come out of war, but the advancement of medicine is probably the most important thing,” he said.

Tuesday, March 13, 2012

TASH responds to American Association of School Administrators position supporting restraint , seclusion in schools

The TASH press release. Pictured is a seclusion room in Murrayville, Ga., where a 13-year-old killed himself in 2004.

Last week, the American Association of School Administrators issued an unsubstantiated, ill-informed and reckless report in which it voiced support for restraint and seclusion use on children in our schools.

This report gained much attention through e-mail circulation and national news reports. TASH has responded in order to bring clarity and truth to the conversation.

In the report, AASA frames the decision to use restraint and seclusion this way: "If school districts were unable to occasionally use these techniques with students with severe behavioral or emotional disorders, then these students would have to be institutionalized or sent to private facilities where they may not have the same rights and services available to them."

Either submit to restraint and seclusion or be institutionalized? We know these are not the only options. AASA goes on to suggest restraint and seclusion ensures greater safety for teachers, and that these practices are what allow students to remain in public school settings.

The truth is, restraint and seclusion is dangerous and traumatic for everyone involved, and is used most often for convenience and punishment rather than emergencies. These practices also disproportionately impact students with significant disabilities, particularly those between ages 6 and 10.
You can download a copy of the TASH response letter here.

Monday, March 12, 2012

In Scotland, sign language 'turned into text' by Aberdeen scientists

from BBC news in the UK:

Technology aimed at translating sign language into text is being developed by Aberdeen scientists.

The portable sign language translator (PSLT) would use the camera on devices such as laptops and phones.

An app would then translate the movements into text which can be read by people, who may not understand sign language.

Computing scientists at Technabling, a spin-out company of the University of Aberdeen, are behind the technology.

It is hoped this could transform how sign language users - from the profoundly deaf to those who have lost hearing in later life - communicate.

One of the main focuses is to help young deaf people improve employment opportunities.

Dr Ernesto Compatangelo, a lecturer in computing science at the University of Aberdeen, and founder of Technabling, said: "The aim of the technology is to empower sign language users by enabling them to overcome the communication challenges they can experience, through portable technology.

"Their signs are immediately translated into text which can be read by the person they are conversing with.

"The intent is to develop an application - an app in smart phone terms - that is easily accessible and could be used on different devices."

He added: "One of the most innovative and exciting aspects of the technology is that it allows sign language users to actually develop their own signs for concepts and terms they need to have in their vocabulary."

Sign language users have helped the development and testing of the product since its conception.

Local sign language users interested in becoming involved with the ongoing development can get in touch via  

It is hoped the technology could be available as a product by 2013.

Paralympian, model Aimee Mullins becomes international face of L'Oreal

From ANI:

SYDNEY -- Bilateral amputee Aimee Mullins (pictured) was introduced by L'Oreal as one of its latest "I'm worth it" campaign faces at the Melbourne Fashion Festival March 8.

The 35-year-old model, who had both her legs amputated when she was year old, joined the Australian ambassador Megan Gale at the VIP luncheon that kicked off the Fashion Festival.

"Remember, I'm hauling around an 80 pound bag of legs everywhere I go," the Sydney Morning Herald quoted her as saying.

At the event, Mullins concealed her legs in a sleek black Alexander McQueen slack suit. She was a close friend and muse for the British designer, who stunned the fashion world - including many at the lunch - two years ago by taking his own life.

"I miss him.

"He was beautiful, romantic, a soft, gooey pudding," she said.

Mullins walked for the maverick McQueen in 1999 and is said to have inspired some of his work.

She described an extraordinary life, barely troubled by the amputation of both legs at the age of one because of a condition called hemimelia, or missing fibula bones.

"My parents let me experience the world as it is.

"At eight, I had prosthetic legs so good at being waterproof, they were buoyant. I'd go off the high dive at the community pool and come straight up, legs first!" she said.

L'Oreal closed the unusual lunch with a "taster" of fashions by seven top designers - White Suede, Morrison, Aurelio Costarella, Megan Park, Gorman, Magdalena Velevska and Ginger and Smart.

They represent brands now preparing for the festival's highlight Paris Runway show series beginning tomorrow night. The series' huge Peninsula venue on Central Pier, Docklands, is an exotic setting for almost 80 winter collections, including the silky, glamorous gowns of designer Gwendolynne Burkin.

In case that challenges Britain's definition of murder, judge rules that severely disabled man who wants doctor to kill him will be granted hearing

From The Huffington Post:

LONDON — In a case that challenges Britain's definition of murder, a judge ruled Monday that a severely disabled man who wants a doctor to kill him will be granted a hearing.

It is the first euthanasia case of its kind to be allowed a hearing in a British court.

Tony Nicklinson (pictured), 57, suffered a paralyzing stroke in 2005 that left him unable to speak or move below his neck. The former rugby player and corporate manager requires constant care and communicates largely by blinking, although his mind has remained unaffected. In January, Nicklinson asked the High Court to declare that any doctor who gives him a lethal injection with his consent won't be charged with murder.

"I have no privacy or dignity left," Nicklinson said in a statement. "I am fed up with my life and don't want to spend the next 20 years or so like this."

The ministry of justice argued that granting Nicklinson's request would require changing the law on murder and that such changes must be made by Parliament. The government had applied to have the case dismissed.

In his ruling, Justice William Charles said Nicklinson was "now inviting the court to cross the Rubicon" and that his case had "an arguable base."

Nicklinson argued that British law hindered his right to "private and family life" – guaranteed by the European Convention on Human Rights – on the grounds that being able to choose how to die is a matter of personal autonomy.

"The decision to go to a hearing is quite a small step, but what's tremendously significant is what Tony Nicklinson is asking for," said Emily Jackson, a law professor at the London School of Economics. "Normally, it would be for Parliament to make any change to the law on murder, so it would be a very, very big deal for the court to make a change like this."

Nicklinson's wife, Jane, says the only way to end her husband's suffering was to kill him.

"A life like this is unbearable for him," she said. "We know there are doctors out there that would do this if it is made legal."

A recent British commission headed by a former justice secretary concluded there was a strong case for allowing assisted suicide under strict criteria. The commission was set up and funded by advocates who want the current law changed. The report did not support euthanasia and recommended assisted suicide only be allowed for terminally ill people, which would exclude Nicklinson.

In 2009, the British government's top prosecutor said people who helped terminally ill relatives and friends die were unlikely to be charged if they acted out of compassion.

In Europe, only Belgium, the Netherlands, Luxembourg and Switzerland allow euthanasia.

Penney Lewis, a law professor at King's College London, said the U.K. had become more receptive to allowing assisted suicide in recent years but not euthanasia.

"Granting Nicklinson a hearing does not mean euthanasia will be allowed, but it is a big step," she said.

In 2010, Kay Gilderdale was found not guilty of the attempted murder of her severely disabled daughter. Gilderdale admitted she had tried to kill her daughter, who had repeatedly asked to die.