Media dis&dat

ReelAbilities Film Festival: ‘We favor films about the people, not the disability’

2012-02-01T21:34:00.000-05:00

From The Jewish Week. Pictured is the film Ocean Heaven, a Chinese film about an autistic son and his father (played by Jet Li in his first dramatic role), which will open the ReelAbilities NY Film Festival Feb. 9.

What is the largest minority group in the United States? Hint: it is the only minority group to which anyone may belong, a group that many of us will join with the passage of time, but a group that is woefully underrepresented in many elements of American life, including the arts.

As the U.S. Census defines members of this group, they are “persons with a limitation in a functional activity or a social role,” more commonly referred to as people with disabilities, and they make up 20 percent of the population. But, as the fourth annual ReelAbilities: NY Disabilities Film Festival, which runs from Feb. 9-14, reminds us, a frustratingly small percentage of the films made here touch on their lives.

“America is not leading the way, unfortunately,” says Isaac Zablocki, director of film programs at the JCC in Manhattan, which organizes and hosts the event here. “The fewest films in the festival come from American filmmakers because they exist in a commercial system with almost no governmental support. Audiences shy away from the topic.”

The programmers for ReelAbilities have a simple solution.

“We scare the shyness out of them,” Zablocki says, chuckling. “People come away from the festival saying, ‘I want to see more.’”

The connection between the JCC and ReelAbilities is typical of a growing awareness in the Jewish communal world of the neglect of people with disabilities both in the Jewish community and the world at large. As recent stories in this newspaper have underlined, Jewish organizations have been taking a more proactive stance on these issues.

“Minorities frequently find one another,” Zablocki says. “The JCC doesn’t position this as a specifically Jewish event; we try to be as inclusive as possible. But this has been a conscious mission of the Jewish community, and I would hope we would be as active at the forefront as we were in the beginnings of the civil rights movement. We receive generous support from UJA-Federation [of New York], and as we go around the country promoting the festival we find the Jewish community heavily involved.”

The very fact that ReelAbilities is promoted around the country sets it apart from most film events. Quite simply, the festival is promoted around the country because, by design, it is held around the country. It is a national event that will take place in a dozen cities this year, as well as in 23 locations in the New York metropolitan area.

The criteria by which films are judged for selection are unique as well. Of course, the committee that programs films for ReelAbilities is looking for good films. But it is seeking something more.

“We look for great films, but a film’s approach to disability is equally important,” Zablocki explains. “A lot of films take a pity approach or condescend to their characters with disabilities. We take a more progressive approach. We favor films that are about the people, not the disability. We are looking to give viewers access to a world in which some of the characters happen to have a disability.”

The programmers are also looking for a no-holds-barred tone.

“We’re not afraid to be in-your-face, not afraid to show anything,” he continues. “Frankly, we’re more impressed by movies that have it ‘in-your-face.’ They’re often the better films. Any film that needs to dance around the topic is not going to present it realistically. No pity. No shame. The films that really put it ‘out there’ are the most honest pieces.”

The festival also actively seeks out films made by people with disabilities, films that offer “an insider’s look at these stories,” as Zablocki puts it.

The bulk of the films in the festival come from countries where subsidies are available to filmmakers and where — regardless of other political circumstances — there is a strong governmental impetus to support people with disabilities.

“We get a lot of films from China,” Zablocki says. “This year’s opening night film, ‘Ocean Heaven,’ is Chinese. There appears to be a real interest in these issues from their government.”

“Ocean Heaven” is the story of a father trying to teach his autistic son to manage on his own. Interestingly, the father is played by martial-arts star Jet Li, in his first dramatic role. For Li the film was a labor of love, connected to the charitable foundation he heads.

One of the films about which Zablocki is particularly enthusiastic is the Iranian feature “Mourning.”

“This is a fantastic film about a deaf couple trying to find a way to tell their nephew that his parents have been killed in an accident,” he says. “We actually kept the door open a bit [past our deadline] so that we could have the film in the festival.”

The continued success and steady growth of ReelAbilities may be a reflection of a greater global sensitivity to issues of disability both in and outside of the film industry. Zablocki takes hope from the success of “The Surrogate,” a film about real-life poet and journalist Mark O’Brien, who as a child contracted polio, which paralyzed him from the neck down. Written and directed by Ben Lewin, a Jewish polio survivor, the film won the Audience award for dramatic features at this year’s Sundance festival, and was acquired for theatrical distribution by Fox Searchlight.

In the meantime, Zablocki expects the event to grow, with the addition of an on-line presence and more venues in the years to come.

“Hey, we haven’t done an event in California, yet,” he says. “We’re not limiting our growth at all.”

The fourth annual ReelAbilities: NY Disabilities Film Festival runs Feb. 9-14 all over the city. In addition to the film screenings, there are many programs with speakers, Q&A sessions with filmmakers and more. For locations, schedule and information, go to http://newyork.reelabilities.org.

UN welcomes Iraqi ratification of pact on rights of persons with disabilities

2012-02-01T21:24:00.000-05:00

From the United Nations:

The United Nations welcomed Jan. 30 the ratification by Iraq of a convention that protects, promotes, and ensures the full and equal enjoyment of all human rights by persons with disabilities.

The Convention on the Rights of Persons with Disabilities, ratified last week by the Iraqi Government, covers a number of key areas such as accessibility, personal mobility, health, education, employment, habilitation and rehabilitation, participation in political life, and equality and non-discrimination.

“The ratification of this convention by Iraq marks a historic step in ensuring that persons living with disabilities enjoy full participation in the Iraqi society and can contribute to the community to their full potential,” said Francesco Motta, chief of the human rights unit of the UN Assistance Mission for Iraq (UNAMI) and Representative of the UN High Commissioner for Human Rights (OHCHR) in Iraq.

Mr. Motta stressed that the ratification represents the Government’s recognition of the “potential contribution which persons with disabilities can make to society if given the same opportunities enjoyed by other Iraqi citizens.”

UNAMI noted in a news release that the ratification requires Iraq to introduce measures such as anti-discrimination legislation, the elimination of laws and practices that discriminate against persons with disabilities, and considering these persons when adopting new policies and programmes. Other measures include making services, goods and facilities accessible to them.

“The important thing now is for the Government of Iraq to ensure that the provisions of the convention are implemented,” Mr. Motta said. “The best way to do this is in consultation with civil society organizations and representatives of people with disabilities so as to ensure that measures taken to implement the convention promote and protect their right to participate equally in the economic, social and political life of Iraqi society without discrimination.”

Girl with intellectual disability denied transplant by Philadelphia hospital gets second chance

2012-02-01T21:22:00.000-05:00

from UPI:

PHILADELPHIA -- The Philadelphia hospital that initially denied a kidney transplant for a 3-year-old girl is now willing to consider the procedure, the girl's parents said.

Chrissy and Joseph Rivera said they met with medical personnel at Children's Hospital of Philadelphia Friday about the possibility of a transplant for their daughter Amelia, The Philadelphia Inquirer reported Tuesday. The Riveras said they were not told if Amelia would be medically eligible for the transplant.

"As of now, we're taking this as a positive sign," Chrissy Rivera said.

Amelia, who has Wolf-Hirschhorn syndrome, received national attention when Chrissy wrote a blog post accusing the hospital of denying the kidney transplant because of the girl's mental disability. Chrissy said the girl's chart initially listed mental retardation as a reason not to perform the procedure, though those words were later removed.

"If there's a medical reason" a kidney transplant would be a bad idea, Chrissy said, "of course we're not going to do it."

She said Amelia's case will be further reviewed to determine if she's a good candidate for the procedure.

As of Monday, 37,000 people had signed a petition on change.org, asking the hospital to allow the transplant, the Inquirer reported.

Chicago files 15 separate lawsuits against cab owners not in compliance with current wheelchair accessibility requirements

2012-01-30T18:23:00.000-05:00

From Sun-Times Media Wire:

CHICAGO - The city announced Jan. 28 it has filed 15 separate lawsuits against cab owners not in compliance with current wheelchair accessibility requirements.

A city investigation found the owners were not providing the required number of wheelchair accessible cabs, according to a release from Mayor Rahm Emanuel’s office.

Recently adopted ordinances require cab owners with more than 20 medallions to have at least five percent of their fleet as functioning wheelchair accessible vehicles, the release said.

“We are committed to providing better, more accessible taxi service for disabled Chicagoans,” Emanuel said in the release. “Today’s efforts, in conjunction with the taxi reforms passed by City Council this month, mark important steps toward this goal.”

The city is seeking the revocation of the medallion licenses that were required to be wheelchair accessible vehicles, the release said. The cases are up for first status hearings March 2012 in front of the city’s Department of Administrative Hearings.

“Taxicabs are a critical transportation option for people with disabilities living in or visiting Chicago,” city Business Affairs and Consumer Protection Commissioner Rosemary Krimbel said in the release. “Today’s actions reflect our commitment to ensure that the rules we have in place to protect the rights of people with disabilities are enforced.”

The new ordinance also provides incentives for cab owners to place more wheelchair accessible vehicles into service.

In Missouri and Kansas, rural communities have strongest reliance on disability benefits

2012-01-29T23:14:00.000-05:00

Intro to the story in the Kansas City Star. Pictured is Becky Noland, who has muscular dystrophy, has been collecting Social Security disability benefits for years. Her fiance, John Hale, has been trying to get benefits for years, but hasn’t succeeded. They live in Lincoln, Mo.

WARSAW, Mo. -- Around this rural county seat 100 miles southeast of Kansas City, 1 out of every 8 people of working age is home collecting disability checks from the Social Security Administration.

That compares to about 1 in 20 for the Kansas City area — which may sound low, but it’s climbing here, too.

Everywhere, Americans below retirement age are surviving on Social Security disability benefits and, with baby boomers aging in a slow economy, applications are exploding. Each year since the onset of the recession, more than 400,000 have been joining the system’s disability rolls, where they collect a monthly average of about $1,000.

But where are they most apt to collect it? A recent tabulation of data nationwide reveals the highest concentrations of communities subsisting on disability benefits, per capita, to be in historically poor, rural settings.

They’re often places where two-lane highways wind around wooded hills, where mining or manual farm labor once put food on the table, and access to medical care has long been limited.

Poverty begets bad health and greater rates of disability, experts say, and disabilities often lead to deeper poverty.

In Benton County, Mo., where city folk enjoy camping and shopping for antiques around Truman Lake, Becky Noland, 32, lives on little more than the $716 monthly allotment that Social Security provides. Both of her parents collect disability, and a fiancé is trying to after three back operations plus a stroke that weakened his right side.

Noland said she knows people who game the system. One bought a motorcycle with disability benefits awarded on a claim of being legally blind, she said.

“That makes me angry,” Noland said from her wheelchair. Muscular dystrophy has withered her legs and curled her fingers.

The maladies afflicting some of her countryside neighbors are far less visible — back pain, mood disorders, heart issues, the whole range of physical and emotional side effects from serving in Vietnam or the more recent theaters of war.

Not all of this region’s disabled grew up here. Many moved in from the cities because life is more affordable in a mobile home outside Warsaw or at an RV park lakeside.

In four contiguous west-central Missouri counties — Benton, Hickory, St. Clair and Morgan — the unemployment rate ranges between 9 percent and 12 percent. Add to those jobless rolls the 10 percent to 13 percent of residents between ages 15 and 64 collecting Social Security disability checks.

That’s according to an analysis of 2009 data by Mississippi State University researcher Roberto Gallardo and the nonprofit Center for Rural Strategies.

The per-capita rates of disability beneficiaries were higher yet in the Missouri Bootheel and rural parts of Alabama, Arkansas and the Appalachians. The website Daily Yonder reported that Buchanan County, Va., led the nation with 27 percent of working-age people on federal disability benefits in 2009.

The national average for working age but disabled?

It’s calculated at 4.6 percent, up from about 2.5 percent of the nonelderly adult population in the mid-1980s.

“You find higher rates in counties historically reliant on extraction industries — mining, agriculture, forestry,” said Tim Marema of the Center for Rural Strategies.

Where the mining has vanished, as in parts of west-central Missouri, generations of workers have been afflicted by struggling economies, low-paying jobs, poor access to health care and long, hilly drives to the nearest hospital.

Other experts say an array of factors — including the erratic, subjective system for determining who gets benefits and why — might figure into one community’s high reliance on disability income versus another’s low reliance.

In several rural and economically stressed counties in the Kansas outback, for example, the share of beneficiaries was calculated to be well below the national norm.

Blame Photoshop, not diabetes, for this amputation in NY City health department campaign

2012-01-29T18:31:00.000-05:00

From The NY Times:

New York City’s health watchdogs warn that drinking too much sugary soda could cost you a leg. But you also might lose a limb if you appear in one of their ads.

A blunt new poster from the Bloomberg administration shows an overweight man on a stool, his right leg missing below the knee. A pair of crutches leans against a wall beside him. The advertisement, being placed throughout the subway system, warns that ever-growing portions of fast food and sodas could cause diabetes, which could lead to amputations.

But it turns out that the person shown in the advertisement did not need crutches because his legs were intact. The health department confirmed on Tuesday that its advertising agency had removed the lower half of the man’s leg from the picture to make its point: the headline over the image reads “Portions have grown. So has Type 2 diabetes, which can lead to amputations.”

When city officials announced the campaign on Jan. 9, they did not let on that the man shown — whose photo came from a company that supplies stock images to advertising firms and others — was not an amputee and may not have had diabetes. The city did not identify the man, and efforts to reach the agency that supplied the photo were unsuccessful. The photographer who took the picture, Morten Smidt, said he did not know the man’s name.

Mr. Smidt said on Tuesday that he had not seen the advertisement. In response to a description of it, he said, “Well, it is an illustration now, clearly not the picture I did.”

In a news release about the campaign, the health department said that in 2006, nearly 3,000 New Yorkers with diabetes were hospitalized for amputations. The advertisements are the latest in a series of attention-grabbing messages about the dangers of smoking, drinking and consuming too many sweets and fatty foods. Other advertisements that the health department sponsored featured a grizzled smoker who talked through a voice box and a woman named “Marie” from the Bronx who showed off what appeared to be fingers whose tips had been lost to smoking.

City officials said those advertisements were testimonials that showed real people and real consequences. But they said that doing so was not always feasible. “Sometimes we use individuals who are suffering from the particular disease; other times we have to use actors,” said John Kelly, a health department spokesman. “We might stop using actors in our ads if the food industry stops using actors in theirs.”

The American Beverage Association, which opposes the city’s efforts against sodas and fast food, called the advertisement overwrought. “This is another example of the ‘What can we get away with?’ approach that shapes these taxpayer-funded ad campaigns,” Chris Gindlesperger, the association’s director of communications, said in a statement.

Bob Garfield, a commentator for Advertising Age and National Public Radio, said that the misrepresentation “was lazy or cheap or silly, but I wouldn’t lose any sleep over it.” Still, he said, “Why people lie when there’s no penalty for telling the truth is an absolute mystery to me.”

Class action lawsuit in Oregon seeks end to segregated sheltered workshops for people with disabilities

2012-01-27T21:00:00.001-05:00

From United Cerebral Palsy Association of Oregon and Southwest Washington. Pictured is a sheltered workshop in Minnesota. For the complaint, a fact sheet, and press coverage, click here.

PORTLAND, Oregon – – Advocates for individuals with intellectual and developmental disabilities filed a class action lawsuit January 25 challenging Oregon’s failure to provide supported employment services to more than 2,300 state residents who are segregated in sheltered workshops where they perform mundane tasks, such as folding UPS bags.

The lawsuit, filed in U.S. District Court, charges state officials with violating the Americans with Disabilities Act and the Rehabilitation Act by confining individuals with disabilities to segregated settings where they have little – if any – interaction with non-disabled peers. Moreover, they are paid far below the state’s minimum wage of $8.80 for doing rote tasks that offer no training, no skills, and no advancement.

For more than a decade, lead plaintiff Paula Lane, 48, has had the same request: “Find me an outside job.” Instead, she and 137 other people with disabilities package gloves or put parts into boxes on assembly lines in a noisy and crowded sheltered workshop in Beaverton. Despite her request for competitive employment and her high performance scores, her individualized service plan has no goals related to employment. She lives in an apartment with staff support, and would like to go to a country music concert or attend an Upward Bound camp, but her resources are limited. Over a 12-month period in 2010-11, she made a high of 66 cents an hour.

Another plaintiff, Lori Robertson, 51, performs mundane tasks at a sheltered workshop in Gresham. She has been assigned to these segregated settings since 1981. Robertson earned $126.15 for 53.9 hours of work in December 2011 – which works out to $2.34 an hour. She lives in a group home and would like to earn at least minimum wage in an integrated job in the community. She also would like to go bowling or horseback riding, but has little money left after paying her bills.

According to the lawsuit, Oregon currently spends $30 million a year confining individuals with disabilities to sheltered workshops. The plaintiffs contend it would be much cheaper to fund programs that promote integrated, supported employment. They cite a 2010 Call for Action Report issued by the state’s Office of Developmental Disability Services that recognized “cumulative costs generated by sheltered employees may be as much as three times higher than the cumulative costs generated by supported employees – $19,388 versus $6,618.”

The plaintiffs are represented by Disability Rights Oregon, Miller Nash, Perkins Coie, and the Center for Public Representation.

“The Americans with Disabilities Act recognizes that discrimination against individuals with disabilities includes intentional segregation and relegation to lesser service jobs,” said Bruce Rubin, partner at Miller Nash. “This law protects individuals with developmental disabilities, like the named plaintiffs in this lawsuit.”

Ironically, throughout the 1980s, Oregon was at the forefront of a national movement to reduce the number of sheltered workshops and increase opportunities for integrated and supported employment. However, beginning in the mid-1990s, the state changed course and the raw number and percentage of people served in sheltered workshops more than doubled, while the number and percentage served in supported employment has almost halved. This reversal, ascribed to a lack of commitment to expanded supported employment programs and to a drop-off in federal monies for such programs, coincided with the 1999 U.S. Supreme Court ruling in Olmstead v. L.C. that ordered states to develop concrete, measurable plans to integrate disabled persons into the general population.

“Requiring integration in employment is the next natural step for obeying the integration mandate required by the U.S. Supreme Court and the U.S. Department of Justice,” said Steven Schwartz, litigation director at the Center for Public Representation.

“It is time to require that the State of Oregon follow the law,” said Bob Joondeph, executive director of Disability Rights Oregon.

“We want the state to provide supported employment programs in integrated employment settings and to develop measurable plans that describe modifications to the state’s employment service system,” said Lawrence Reichman, partner at Perkins Coie.

Joondeph cited the plaintiffs’ segregation and inequitable wages, and added, “They deserve better.” For example, 28-year-old Sparkle Green wants “a community job,” but no one has discussed integrated employment options with her or offered her supported employment services. She has almost perfect performance scores at the Beaverton sheltered workshop, but earned less than 46 cents an hour in August, 39 cents an hour in September, and 29 cents an hour in October.

Gretchen Cason, 27, was referred to a sheltered workshop that purported to provide employment services, but instead offered only crafts projects, and she spent three years watching television or coloring. If she ever has the chance, she would work in a music store or an ice cream parlor. As she explains, what she wants is “a job that’s not boring.”

Andres Paniagua, 32, works with 66 other individuals with disabilities in a sheltered workshop that cuts steel. Mr. Paniagua has worked in every department from the machine shop to the front office. Despite his demonstrated ability, interest, and repeated requests for outside integrated employment, he has not been afforded any community-based options. Rather, the goal outlined in his “individualized” service plan calls for more segregation: “opportunities in employment in a workshop setting and for activities and socialization with other people with disabilities.”

The other named plaintiffs are Angela Kehler, 48, who has been forced to remain in sheltered workshops since she was laid off from a successful job placement at a drugstore; Elizabeth HarrahZavier Kinville, 27, who is stuck at a sheltered workshop, awaiting an opportunity for integrated community employment. Kinville has volunteered in the community, where his favorite job was reading to children.

United Cerebral Palsy of Oregon and Southwest Washington (UCP), which serves adults, children, and families experiencing cerebral palsy and intellectual and developmental disabilities, is an organizational plaintiff in the lawsuit. UCP executive director Ann Coffey said its efforts to increase supported employment programs have been frustrated by the state's diversion of resources into sheltered workshops. As alleged in the lawsuit, thousands of individuals with disabilities are unable to get supported employment services because the Department of Human Services (DHS) administers and funds an employment system that relies primarily on sheltered workshops.

The plaintiffs are asking the federal court to direct the state to end their needless segregation in sheltered workshops and to provide supported employment services to enable them to participate in competitive employment in integrated settings as mandated by federal law.

The lawsuit, Lane v. Kitzhaber, names as defendants Governor John Kitzhaber; Erinn Kelley-Siel, DHS director; Mary Lee Fay, administrator of the Office of Developmental Disability Services; and Stephanie Parrish Taylor, administrator of the DHS Office of Vocational Rehabilitation Services.

In Maryland, autistic boy beat up at the bus stop while peers watch and cheer; One posts video on Facebook

2012-01-26T21:35:00.000-05:00

From WMAR-TV in Baltimore:

Disturbing video has surfaced of a autistic boy in Cecil County who is punched by another boy while other children watch.

The victim, Kaleb Kula, (pictured) is a sixth-grader at Elkton Middle School.

“I knew I was probably going to get injured,” he told ABC-2 News. “I wasn't really scared because I knew what would happen.”

Kaleb also said he’s been the victim of bullying at school for years. He's been diagnosed with a form of autism, along with attention deficit, hyperactivity disorder.

“At least kids that don't have special needs can defend themselves a little bit more. He's pretty much defenseless,” said his father, James Kula.

During a typical day at school Kaleb says the other kids: “Call me homosexual. They try kicking me, pushing me, punching me, and a lot of other things.”

His parents say they've made dozens of requests for help.

“It’s very stressful I mean you worry all the time, is he going to have a good day, are they going to do anything about when he has trouble with other students,” said Kaleb’s mother, Jessica Kula.

School officials declined to speak about Kaleb's case specifically, but they say offending children can be disciplined. And they also bring parents together to discuss issues between students.

Elkton Police tell ABC-2 News the boy in the video who hits Kaleb Kula has been charged as a juvenile with second-degree assault.

But the Kulas say the school system never did anything until last year, when they were told to fill out a form officially reporting that their son was being bullied.

“We have a policy that we follow, the investigation is conducted and no matter how that report gets to those administrators they will follow through and look into the situation,” said Kelly Keeton, of the Cecil County Public Schools.

The child who took the video posted it on his Facebook page where it was viewed by dozens of students and also Kaleb's parents. “It feels terrible as a parent to watch that happen to your son. And I just can't believe that kids can be so mean,” said Jessica Kula.

Kaleb hasn't been back to school since Tuesday; his parents say he will try to go back again on Friday.

“I'm going to try to put this behind but then it's going to come running back in front of me and confront me again. That's what I think will happen,” Kaleb said. “It's like a groundhog trying to run from its shadow.”

Stories trump sound at upcoming Seattle Deaf Film Festival

2012-01-26T21:31:00.000-05:00

From KOMO-TV:

Some would say that sight AND sound are essential for a truly enjoyable movie experience. So, when the University of Washington unveiled a plan to organize the Seattle Deaf Film Festival- the first of its kind in the Northwest- the challenge was set.

Kicking off March 30 through April 1, the festival hopes to create a truly one-of-a-kind movie experience for people unable to hear the action on screen. UW’s ASL and Deaf Studies Program has partnered with Deaf Spotlight, a nonprofit that focuses on the culture and creativity of the deaf community, to make this festival happen.

“Our program aims to create awareness of deaf culture,” Lance Forshay, lecturer and coordinator of the ASL and Deaf Studies Program, told UW’s Perspectives newsletter this month. “This festival is an opportunity to do that.”

The films are special in that they are created by, for, or about the deaf community. They span genres one might not expect of non-sound films, from documentary to drama, comedy and animation. The films have been submitted from the U.S., England, France, Thailand, South Korea, the Philippines, South Africa, and Mexico.

Deaf listeners will be able to follow the stories with help from subtitles. Non-signing audience members will also have subtitles when the actors sign rather than speak.
“That’s for the sign language impaired,” Forshay told Perspectives.

The Seattle Deaf Film Festival will be held in 120 Kane Hall on the University of Washington campus.

In Canada, disabled Montrealers fight for full access to Metro network

2012-01-26T10:59:00.000-05:00

From The Gazette in Canada. (Thanks to Laurence Parent for sending me this story.):

MONTREAL - Laurence Parent advances her motorized wheelchair to the top of the escalator at Beaubien métro station and gazes down at the platform far below.

The PhD student at Concordia University longs to be able to use the rapid transit system most Montrealers take for granted. But in 90 per cent of the métro system, the closest she can get is here, to the top of an inaccessible escalator or flight of stairs.

“You’re so close but so far from the goal,” says Parent, 26. “You can see the end of the escalator, but it’s really like Mount Everest.”

For disabled Montrealers, full access to public transit is still an unattainable dream. In 2008, Montreal vowed to catch up with cities around the world by making its subway system accessible by 2028.

But the speed of improvements has been slower than expected. Just seven stations out of 68 – 10 per cent – are wheelchair-accessible today. At that rate, it will be 2085 before people in wheelchairs can use the entire network, disabled users say.

In contrast, 43 per cent of Toronto’s 69 subway stations are accessible, with that city on track to make its entire network accessible by 2025.

That’s why Parent, vice-president of the Regroupement des activistes pour l’inclusion au Québec

(RAPLIQ), is among 11 disabled commuters who have lodged complaints with the Quebec Human Rights and Youth Rights Commission, charging the Société de Transport de Montréal with discrimination under the province’s human rights charter.

The case – the first of its kind in Quebec – seeks $20,000 in damages for each complainant.

On Monday, the group will hold a session to explain to other disabled transit users how to join the campaign. An organization representing blind and partially sighted people, the Regroupement des aveugles et amblyopes du Montréal métropolitain (RAAMM), will be on hand to explain obstacles facing visually impaired travellers.

Time was when the complaints over transportation for people with disabilities focused on problems with adapted-transit minibus service.

But in recent years, users like Parent have stepped forward to demand access to regular transit service.

“We have to get back to basics and remember that accessibility to public transit is a right. It is recognized by the Charter of Rights. It is technically recognized by the law on the integration of disabled people,” Parent says.

She knows what she’s talking about. A native of Lemieux, a village of 300 in central Quebec, Parent holds a master’s degree from York University, where her thesis was on lack of accessibility in the Montreal métro. Her doctoral research is on the history of the exclusion of disabled people.

Until moving to Montreal in 2002, Parent, who is wheelchair-bound due to a form of dwarfism, assumed the transit system would be accessible.

On her first day in the city, she discovered the métro was off-limits for wheelchairs. The next day, she tried to take a bus but the ramp didn’t lower properly.

“The big problem is that the STM is not doing the maintenance,” Parent said.

In September, RAPLIQ members surveyed 64 buses across the city and found almost two-thirds were unable to take disabled people on board because of various mechanical problems, like wheelchair ramps that did not deploy properly.

Parent says her local bus, the No. 30 on St. Hubert St., only comes twice an hour. “If it isn’t working, I have to wait another half-hour. It could be cold. It could be nighttime,” she says.

Critics of Montreal’s commitment to accessibility argue the cost of installing elevators – at $15 million per station, according to the city – is prohibitive.

But Parent points out the Montreal métro lags far behind the rest of the world. A 2002 Quebec study said the city ranked last among 30 subway systems internationally, of which 89 per cent were fully or partly accessible. The aging of Montreal’s population means demand for accessible transportation will only rise in the coming years, the study noted.

Montreal had no wheelchair accessible stations until 2007, when three new stations opened in Laval. Since then, Côte Vertu, Lionel Groulx, Berri-UQÀM and Henri Bourassa stations have been retrofitted with elevators.

But Parent said the slow pace of investment to make other stations accessible shows the city isn’t really serious about fulfilling its commitment.

“They want to increase ridership by 40 per cent,” she says. “What we’ve realized is we aren’t part of the 40 per cent.”

STM spokesperson Isabelle Tremblay refused to comment.

DC Council member Mary Cheh wants more wheelchair-accessible taxis in fleet

2012-01-25T18:40:00.000-05:00

from DCist:

Outside the Wilson Building this afternoon, Councilmember Mary Cheh (D-Ward 3) showed off one of the city's relatively new wheelchair-accessible taxicabs ahead of a hearing next Monday at which the D.C. Council will consider a sweeping overhaul to the city's taxicab regulations.

Cheh, who chairs the Environment, Public Works and Transportation Committee, inspected the accessible cab, a 2010 Toyota Sienna minivan converted to incorporate a wheelchair ramp extending from its rear door. The van is one of 10 operated by Yellow Cab Company of D.C.; Royal Cab also operates 10 of the vans.

The accessible taxis were first deployed in May 2010 as a pilot program for wheelchair friendly livery service. The vans, which normally cost $33,000 plus another $12,000 to retrofit for accessibility, were paid for largely by a grant administered by the Federal Transit Administration. The grants, authorized in 2008, paid 80 percent of the cost of each vehicle, with the remainder assumed by the vans' operators.

But 20 cabs is a tiny fraction of the District-wide fleet of about 8,500 cars. Wendy Klancher, a transportation planner with the Metropolitan Washington Council of Governments, which oversees the pilot program, said that in most neighboring jurisdictions wheelchair accessible taxis make up one to three percent of fleets.

At the hearing next week, Cheh will also consider an amendment introduced last month that would mandate taxicab companies in the District make 10 percent of their fleets wheelchair-accessible. Cheh said that target could fluctuate, though. Klancher said three to five percent would be a good number to aim for.

"It may well be we should figure out the need," she said. "What I'm hearing is that five percent of fares may involve disabled [passengers]."

Roy Spooner Jr., Yellow Cab's general manager, said the pilot program has been a success, but he was unsure if there was greater interest among drivers in operating wheelchair accessible cabs. Right now, he said, Yellow Cab and Royal are giving between 400 and 450 rides a month to customers with wheelchairs.

One of the reasons the deployment of the vans has worked out so far is that in addition to the subsidized cost of the vehicles, drivers who ferry wheelchair-bound riders receive a $2 surcharge, paid for by the cab company and the grant program, to compensate for the fact that meters are not permitted to be turned on until the disabled customer is secured.

New Gallaudet University building to be model for deaf architecture

2012-01-25T18:29:00.000-05:00

from WJLA-TV:

It might look like just a regular building under construction. But to Gallaudet University students like Colin Whited, it's a place they can call their own.

“They really handed over the ball,” Whited says. “That had never happened in the past.”

The state-of-the-art building, based on the vision of students and faculty, is designed to make it easier for signers to communicate and understand their surroundings.

“It's incredible because typically those who design buildings don't understand our desires... as deaf people,” says one.

Out of those dreams, deafspace was born.

The new architecture will have sloping sidewalks, wider stairs and hallways and rounded corners - all to make it easier for signers to maintain uninterrupted eye-to-eye communication. To heightened sensory awareness, special lighting and color contrasts are strategically used.

The building is expected to be completed in the summer and will be ready for Gallaudet students by the fall.

Architect Hansel Bauman says vibration awareness is another key component

“You can wrap on a table, instigate you want to communicate, the awareness of the vibration, that's what’s unique,” Bauman says.

One room, dubbed Colab, will remain in its current form to inspire creativity. And then there's the social space - a wide open room to promote more student interaction that is unlike anything Gallaudet has had before.

Deafspace specialist Robert Sirvage, says the building is an expression of his culture.

“We are the only ones who know what we need,” Sirvage says.

Whited says he hopes this "first-of-its-kind" dorm will become the new norm.

"This is groundbreaking,” Whited says. “Sets the tone for deaf architecture."

Technology combined with music enables some people with severe physical and mental disabilities to communicate

2012-01-24T21:41:00.001-05:00

from Mark Swed, Los Angeles Times Music Critic. In the picture, Dan Ellsey, left, works musician Tod Machover.

There is a great deal of music in the world, and no one knows exactly why. But it does have its ready uses. The music business can make you rich and famous. The pianist Christopher O'Riley admitted in The Times last week what a lot of classical musicians won't: He learned the piano, at least in part, to attract the attention of girls.

As I write this, a sparkling new recording of Tod Machover's "Sparkler," an infectious overture for orchestra and live electronics, is playing on my stereo and making itself useful. The CD, "but not simpler…," is drowning out trucks on a nearby home construction site whose backup beeps are loud enough to wake the dead a mile away. "Sparkler" is more effectively fueling my fingers as I type than was my morning double cappuccino. The music is lifting my spirits and making writing almost fun. Even so, I'm not getting the greatest, if least explicable, pleasure "Sparkler" can provide. That's obtained by giving the score undivided attention.

Machover, an intriguing futurologist as well as an inventive composer, runs the departments in hyper-instruments (acoustical instruments given spiffy electronic features) and opera of the future at MIT's ultra-high-tech Media Lab. Last week, he was at UC Santa Barbara to speak on "Music, Mind and Health: Diagnosis, Treatment, and Well-being through Active Sound," one of four lectures he's given recently at the university's Sage Center for the Study of the Mind.

Music, Machover said, touches on just about every aspect of cognition. There are theories that music exists to exercise the mind and to help coordinate its separate functions. Music lovers intuitively know what researchers have verified, that music modulates our moods, helps us move, stimulates our language skills, strengthens our memories and can wondrously bring about emotional responses without their bothersome consequences.

The practical applications of music for healing are irresistible. Cutting-edge music therapy can help Parkinson's patients walk, enables the autistic to rehearse their emotions and provides opportunities for stroke victims to regain speech and motor movement. Music is usually the last thing Alzheimer's sufferers recognize. It is our final way to communicate with them, and now it seems music can play a significant role in forestalling Alzheimer's.

This is terrific news. I'm also looking forward to the optimistic day when we will be reimbursed for the price of symphony and opera tickets by BlueCross BlueShield.

But that's not all. In an inspiring feedback loop, Machover and his MIT minions, which include some of the nation's most forward-looking graduate students, are applying their musical gadgets to therapy. The process of making remarkable restorative advances is changing how they think about and make music. And that could affect how the rest of us might think about and make music in the not-so-distant future.

It all began with Hyperscore, a program Machover developed to enable children to compose by drawing and painting on a monitor. A sophisticated computer program translates their artwork into a musical score.

Machover's team took Hyperscore to Tewksbury Hospital outside of Boston, which serves patients with severe physical and mental disabilities, including the homeless. The residents, many of whom were physically unable to communicate or were otherwise uncommunicative, discovered their inner composer. Through Hyperscore they found they could express themselves in a way that bypassed language.

A few patients with hopeless prognoses and no meaningful life had significant enough changes in their pathology that they could actually think about at least partial recovery. Some found a decrease in auditory and visual hallucinations. There were behavior changes in many that allowed for socialization.

Dan Ellsey became the model patient. Born with cerebral palsy and unable to speak, he was forced to communicate with a clumsy headset that pointed to letters to spell out words. He had little control of his body movements. He was in his early 30s, had never been more than five miles from where he was born and seemed doomed to spend a cocooned life in the hospital.

The Media Lab scientists designed a more refined headset for Ellsey that not only inspired him to compose (he turned out to have interesting musical ideas) but even allowed him to perform by controlling tempo, loudness and articulation. He blossomed, and Ellsey, while still a severely affected cerebral palsy patient, has become an active participant in the Hyperscore program, performing, making CDs and teaching other patients. He was a star at the 2008 TED conference.

What this work with music therapy has shown Machover and other researchers is the potential for what he has dubbed "personal" music. This will be a music tailored to an individual's needs, be it medicinal or simply a matter of taste.

A noted MIT neurologist, Pawan Sinha, for instance, is learning how to analyze brain waves to determine what you are hearing when listening to Beethoven's Fifth Symphony. Machover imagines making a piece of music that is your brain listening to the symphony and then creating a Beethoven Fifth jukebox consisting of pieces based on different people's way of listening to Beethoven. The jukebox might then serves as "an automatic empathy system."

Traditionally what a composer has done, Machover explains, is to create a piece that will reach the largest number of people. But as our knowledge of how music affects our bodies and minds grows, the opportunity will arise when a piece of music can be designed specifically for your life experiences, needs and moods. A piece can even be made to change over time as you change.

Machover

But Machover was a step ahead of me. He said that my personal music could be designed to provide all things that I never could have possibly expected. I felt better already.

French film takes issue with psychoanalytic approach to autism

2012-01-24T21:01:00.001-05:00

From The NY Times:

PARIS — “Le Mur,” or “The Wall,” a small documentary film about autism released online last year, might normally not have attracted much attention.

But an effort by French psychoanalysts to keep it from public eyes has helped to make it into a minor cause and shone a spotlight on the way children in France are treated for mental health problems.

The documentary, the first film by Sophie Robert, follows two autistic boys: Guillaume, who has been treated with the behavioral, or “American,” approach; and Julien, who has been kept in an asylum for six years and treated with psychoanalysis. Guillaume, though challenged, is functioning at a high level in school. Julien is essentially silent, locked out of society.

Since Sept. 8, when the film first became available on the Web, it and Ms. Robert, 44, have been the targets of criticism from both the analysts who appear in the film and from within the country’s psychoanalytic establishment. Three of the psychoanalysts whom Ms. Robert interviewed for the film have sued her, claiming she misrepresented them in the 52-minute documentary, which has not yet been screened in cinemas or on television.

On Jan. 26, a court in the northern city of Lille will decide whether Ms. Robert must remove their interviews from the documentary if she wishes to keep screening it. The plaintiffs are also seeking damages of €300,000, or $384,000. The lawsuit might be futile, since the film is widely available on the Web (with English subtitles), having been viewed on YouTube more than 16,000 times. (Ms. Robert argues that the plaintiffs, all of whom appear in the film, signed detailed releases.)

Ms. Robert is planning to screen the film in Philadelphia at an autism conference on Jan. 27, the day after the court is to rule. If she wins, a local channel in the north of France, Weo, has agreed to screen it, as has Télévision Suisse Romande, a Swiss channel.

The film makes no pretense of objectivity, juxtaposing interviews with psychoanalysts with scathing criticism of the field’s precepts. Ms. Robert, 44, describes herself as an anthropologist and said she once wanted to be a psychoanalyst herself.

“I would have never imagined what I discovered,” she said of her first few interviews for the film. “Then I thought, wow, what I hear is just crazy.”

Christian Charrière-Bournazel, the lawyer for the three plaintiffs — Esthela Solano Suárez, Éric Laurent et Alexandre Stevens — did not respond to requests for comment.

But in court filings, Mr. Charrière-Bournazel said the film had been edited to make his clients look absurd. Ms. Robert, he said, presented the project to the analysts as a documentary, though “it was in reality a polemical enterprise meant to ridicule psychoanalysis in favor of the behavioral treatments that are so fashionable in the United States.”

“The film is unfair,” Élisabeth Roudinesco, a French historian of psychoanalysis at the University of Paris VII, said. “It is fanatically anti-psychoanalysis. But I don’t think she’s manipulated the film to make them look ridiculous; rather, I think she chose to talk with very dogmatic psychoanalysts who come across as ridiculous.”

Professor Roudinesco said the French psychoanalysis community was actually quite divided by the question of autism, with some “fanatics who believe that autism is caused by a frigid, cold mother. But you don’t attack an entire discipline of medicine because of a scandal involving a few practitioners.”

“Even if it is proved someday that autism is a genetic malady,” she asked, “why abandon the idea that the talking cure could help the patient?”

The idea that children with autism spectrum disorder should be treated with the “talking cure” employed in psychoanalysis may sound outdated to some viewers, since many medical scientists believe that underlying physiological problems are at least partly responsible for the disorder. In the United States, the National Institutes of Health recommends that it be treated with behavioral and other therapies.

Ms. Robert said the version of psychoanalysis that is most prevalent in France, particularly the post-Freudian school championed by Jacques Lacan, takes it as a given that autism and other mental health problems are caused by children’s relationship with their mothers, or by “maternal madness.”

“Sometimes, when the mother is depressed, in utero, I mean when she is pregnant or at birth, sometimes the child can be autistic,” an analyst tells the camera in one scene. Another explains that autistic children “are sick of language — autism is a way of defending themselves from language.”

To the question of what an autistic child can expect to gain from psychoanalysis, yet another analyst responds, “The pleasure of taking interest in a soap bubble. I can’t answer anything else.”

“Many mothers here live in fear of the social services,” Ms. Robert said. “If you refuse psychoanalysis for your child, they say: “You’re refusing care,” and they can put the kid in an asylum if they want.”

Whatever the reason, the Council of Europe found in 2004 that France had failed to fulfill its educational obligations to children with autism, and, according to Le Monde, only about one-quarter of children with the disorder attend school in France, compared with three-quarters in Britain.

Critics like Ms. Robert argue that there is also a stigma about “American” diseases. In the United States and many other countries, for example, attention deficit hyperactivity disorder, or A.D.H.D., is treated with medications like Ritalin in combination with behavioral therapy. In the French system, simply getting a diagnosis is difficult, some psychologists and parents say.

Christine Gétin said that she started looking for help for her son when he was 4 years old but that it took 10 years just to learn that there was such a thing as A.D.H.D. and that there was medication to treat it. “I saw that my son was suffering,” Ms. Gétin said, becoming disruptive in class and falling behind. Mental health workers told her there was nothing they could do. It was only nine years later that a doctor finally diagnosed A.D.H.D., and the child got a prescription for Ritalin.

After only one day on the medication, she remembers him saying that he no longer had to write everything down in order to get through the day. “My brain did it for me!” her son exclaimed after arriving home.

Ms. Gétin has since gone on to start up HyperSupers TDAH-France, an organization to support families of hyperactive children. In the French system, she said, A.D.H.D. is seen “as an American disorder, or that it doesn’t exist,” Ms. Gétin said.

Ms. Robert notes that the autism treatment that Guillaume used to learn speech — called picture exchange communication system, or PECS — was developed in the United States, something she said has made it that much harder for the French to adopt.

“If you say it’s American, that’s a very bad thing,” she said.

Michel Lecendreux, a psychiatrist who advocates a medical approach to treating A.D.H.D., said there was a fear “that the U.S. mistakes — especially too much drug prescription — will be repeated. We’re trying to avoid that.”

There are signs of change. Ms. Robert was recently lauded in the National Assembly, after François Fillon, the prime minister, announced that autism would be “the Grand Cause of 2012.” Parents have more options for seeking treatment information than in the past, and doctors are being exposed to the latest treatments at international conferences.

The dominance held by psychoanalysis is also showing signs of eroding: Ms. Robert says that while about 80 percent of those in the mental health field are required today to study psychoanalysis, that compares with 100 percent as recently as the 1980s. “Ideas are penetrating from outside, slowly,” said Ms. Robert, who is hoping to make a second instalment on psychoanalysis and sexuality. “I’m very optimistic.”

Eyes for the world: Sri Lanka among the world's largest cornea providers

2012-01-23T22:04:00.000-05:00

From The AP:

COLOMBO, Sri Lanka -– At 10:25 a.m., a dark brown eye was removed from a man whose lids had closed for the last time. Five hours later, the orb was staring up at the ceiling from a stainless steel tray in an operating room with two blind patients — both waiting to give it a second life.

S.P.D. Siriwardana, 63, remained still under a white sheet as the surgeon delicately replaced the cornea that had gone bad in his right eye following a cataract surgery. Across the room, patient A.K. Premathilake, 32, waited for the sclera, the white of the eye, to provide precious stem cells and restore some vision after acid scalded his sight away on the job.

"The eye from this dead person was transplanted to my son," said A.K. Admon Singho, who guided Premathilake through the hall after the surgery. "He's dead, but he's still alive. His eye can still see the world."

This gift of sight is so common here, it's become an unwritten symbol of pride and culture for Sri Lanka, an island of about 20 million people located off the southern coast of India. Despite recently emerging from a quarter century of civil war, the country is among the world's largest cornea providers.

It donates about 3,000 corneas a year and has provided tissue to 57 countries over nearly a half century, with Pakistan receiving the biggest share, according to the nonprofit Sri Lanka Eye Donation Society. The organization began promoting eye donation decades ago, but has since faced allegations of mismanagement and poor quality standards.

The supply of corneas is so great in Sri Lanka that a new, state-of-the-art government eye bank opened last year, funded by Singapore donors. It has started collecting tissue from patients at one of the country's largest hospitals, hoping to add an additional 2,000 corneas to those already shipped abroad annually. Nearly 900,000 people have also signed up to give their eyes in death through the Eye Donation Society's longstanding eye bank.

"People ask me, 'Can we donate our eyes while we are living? Because we have two eyes, can we donate one?'" said Dr. Sisira Liyanage, director of Sri Lanka's National Eye Hospital in the capital, Colombo, where the new eye bank is based. "They are giving just because of the willingness to help others. They are not accepting anything."

The desire to help transcends social and economic barriers. Prime ministers pass on their corneas here along with the poorest tea farmers. Many Sri Lankans, about 67 percent of whom are Buddhist, believe that surrendering their eyes at death completes an act of "dana," or giving, which helps them be reincarnated into a better life.

It's a concept that was first promoted a half century ago by the late Dr. Hudson Silva, who was frustrated by the massive shortage of corneas in his native Sri Lanka. Most eyes back then were harvested from the handful of prisoners hanged each year, leaving little hope for blind patients in need of transplants.

Silva wrote a newspaper piece in the late 1950s pledging to donate his own corneas and appealing to readers to also give "Life to a Dead Eye." The response was overwhelming.

With no lab facilities or high-tech equipment, he and wife Irangani de Silva began harvesting eyes and storing them in their home refrigerator. They started the Eye Donation Society, and in 1964, the first cornea sent abroad was hand-carried in an ice-packed tea thermos aboard a flight to Singapore. Since then, 60,000 corneas have been donated.

While the Society's eye bank was a pioneer, questions about quality emerged as international eye banking standards improved over the next 20 to 30 years. Concerns have recently been raised about less advanced screening for HIV and other diseases, and the eye bank has also faced allegations of mismanagement.

Many of its corneas are harvested from the homes of the dead in rural areas across the country, making auditing and quality assurance levels harder to maintain, said Dr. Donald Tan, medical director of Singapore National Eye Center, who helped set up the new eye bank. Once, he said, a blade of grass was found packaged with tissue requested for research.

Eye Donation Society manager Janath Matara Arachchi says the organization sends "only the good and healthy eyes" and has not received a complaint in 20 years. Arachchi said the organization checks for HIV, hepatitis and other sexually transmitted diseases by dipping a strip into blood samples and waiting to see if it changes color for a positive result. Sri Lanka's Health Ministry also said it has received no complaints about the eye bank from other countries.

Medical director Dr. M.H.S. Cassim denied that anyone from the organization is making money off donations sent abroad. He said they charge up to $450 per cornea to cover operational costs and the high price of preservatives needed to store the tissue.

The cornea is the dome-shaped transparent part of the eye that covers the iris and pupil. It helps to focus entering light, but can become cloudy from disease or other damage. Corneas must be carefully extracted from donors to avoid damaging the thin layer of cells on the back that pump water away to keep it clear. They must be harvested within eight hours of death, and can today be preserved and stored in refrigeration for up to 14 days.

Sri Lanka

Future donors simply mail in the bottom half of a consent form distributed by Silva's Eye Donation Society. The top portion, which looks like an award certificate with a fancy scroll lacing around it, is also filled out and often proudly displayed on the wall — serving as proof to the living that the pledge comes from a generous spirit.

"Just think if we had that level of organ donation and commitment and belief system in the United States, where we have these long lists of people waiting for hearts, livers and kidneys," said Dr. Alfred Sommer of Johns Hopkins University, who spent more than 40 years fighting blindness in the developing world. "If we had that level of cultural investment, there would be no lists for organ transplants."

The U.S. is the world's biggest cornea provider, sending more than 16,000 corneas to other countries in 2010, according to the Eye Bank Association of America. But Sri Lanka, which is 15 times smaller, actually donates about triple that number of corneas per capita each year.

There is no waiting list for eye tissue in Sri Lanka, and its people get first access to free corneas. About 40,000 have been transplanted locally since the beginning, but that still leaves a surplus each year.

Pakistan, an Islamic country where followers are typically required to be buried with all parts intact, has received some 20,000 corneas since overseas donations began, Cassim said. Egypt and Japan are two other major recipients, receiving 8,000 and 6,000 corneas respectively to date, he said.

But Sri Lanka cannot meet global demand on its own. An estimated 10 million people — 9 out of 10 in poor countries — suffer worldwide from corneal blindness that could be helped by a transplant if tissue and trained surgeons were available, according to U.S.-based SightLife, an eye bank that partners with developing countries. It has been working with Sri Lanka's new government facility.

"Sri Lanka has long been known to be a country with an incredible heart for eye donation and a willingness to share surplus corneas to restore sight around the world," said SightLife president Monty Montoya. "While efforts have been made to share information with other countries, I am not aware of any one location being able to replicate Sri Lanka's success."

Where possible, eye tissue should be transplanted within hours of death. That was done in the Colombo operating room where patients Siriwardana and Premathilake were stitched up with what looked like tiny fishing hooks, then bandaged and helped outside.

For Premathilake — whose sight was lost when an open can of acid spilled onto his face while working at a rubber factory — this is his last hope. His right eye still blinks, but there is nothing but an empty pink cavity inside. The stem cells attached to his left eye should help create a new window of sight that he hopes will allow him to go back to work, or at least carry out daily tasks without depending on his parents.

"I am extremely happy," he said. "I didn't know the man who died in his previous life, but I'm always going to say blessings for him during his next births."

Briitish man with locked-in syndrome begins high court battle for right to die

2012-01-23T22:00:00.000-05:00

From The Guardian in the UK:

A man paralysed from the neck down after suffering a stroke that left him with locked-in syndrome will on Monday begin a high court battle to allow doctors to end his life.

In the most ambitious attempt yet to loosen laws on the right to die, Tony Nicklinson (pictured), 57, wants a declaration that any doctor terminating his life will have a "common law defence of necessity" against any possible murder charge.

The test case raises "difficult legal, moral and ethical questions", said Nicklinson's solicitor Saimo Chahal.

The Guardian understands lawyers for the Ministry of Justice will argue the case should be "struck out" as such a change in law would be for parliament and not the courts.

Nicklinson, a former rugby player who worked as an engineering executive in the Middle East, suffered a stroke in Athens in 2005 that left him paralysed, though he is not in a vegetative state.

He can move his head and eyes, and can communicate through use of an Eye-Blink computer or Perspex alphabet board. The married father of two from Wiltshire cannot speak, is fed liquidised food, and dependant on carers.

His disability means he cannot take his own life other than by slow starvation. He wants the right to die at home surrounded by his family rather than travelling to Switzerland, where medically assisted euthanasia is legal. And in any event, he is physically unable to administer any lethal drugs himself, a requirement by the Swiss Dignitas organisation.

His high court application goes far beyond assisted suicide. The director of public prosecutions guidelines on assisted suicide, which list mitigating factors against individuals being prosecuted for assisting suicide, do not apply as Nicklinson cannot be helped to kill himself; he must be killed.

"We are saying there should be a defence to the law of murder and want a declaration that it would be lawful for a doctor to administer a lethal drug to terminate Mr Nicklinson's life," said Chahal.

Lawyers say the case bearing most similarity in legal and ethical terms is that of the Maltese conjoined twins Rosie and Grace Attard, known as Mary and Jodie. Born in October 2000 and joined at the spine, the twins were separated in Britain after a far-reaching court order against the wishes of their parents because Rosie could not survive independently and the lives of both were at risk. Rosie died on separation.

Nicklinson, who has two daughters, Lauren, 24 and Beth, 23, with his wife Jane, and who lives in Melksham, suffered the stroke while working for a Greek civil engineering firm based in the United Arab Emirate.

He has said in previous statements: "What I have to look forward to is a wretched ending with uncertainty, pain and suffering whilst my family watch on helplessly.

"Why must I suffer these indignities? If I were able-bodied I could put an end to my life when I want to. Why is life so cruel?".

His lawyers say he is mentally competent, can make decisions about life and believes fervently in the right to self determination.

Sundance filmmaker profile: James Redford’s ‘D-Word’ cracks the code of dyslexia

2012-01-21T22:35:00.000-05:00

From The Salt Lake City Tribune in Utah:

James Redford, director of the HBO documentary “Mann vs. Ford,” didn’t have to cultivate an interest in dyslexia for his latest effort, “The D Word.” His son Dylan (pictured) was diagnosed with the learning disability in fourth grade.

Still, that didn’t leave Redford off the hook when it came to research. In a process that took two years to completion, the documentary project originally slated for a 10-minute short grew into something much larger. That’s because, as Redford explains, dyslexia as a condition is far larger and more complicated than many people understand.

An estimated one in five children receive the diagnosis. Most crucial is knowing that dyslexics often have talents that dwarf their disadvantages. As evidence, Redford interviews Virgin Group’s founder Richard Branson and California Lt. Gov. Gavin Newsom, among others. The film has lots of personal touches, too, including his own son Dylan, now 20 and attending Middlebury College.

When you set out to find famous subjects for this film, who were you most surprised to learn was diagnosed with dyslexia?

Probably Charles Schwab. I had a predisposed notion, even though my son had dyslexia, about the financial world and the kind of skills it takes to be successful there. The eye-opener to me in general is that the core to doing anything well is creativity. Thinking originally is the key to anything, whether you’re looking at building a better airline, or founding a financial company.

Aside from learning to read and write, what is the first, most important challenge families with dyslexic children face?

The elementary school years are so important to informing self-esteem. A learning disability can pull children back right at the time they’re forming perceptions of themselves in the world. That just dominates your life as a parent. But it’s important to realize that the child also has gifts. As thinking becomes more important in overall success, you realize there are advantages to having a brain that works differently. Dyslexia is a challenge you wouldn’t wish on anyone, but it does have gifts. That’s a story that hasn’t been told. And that’s what gravitates all filmmakers: Stories that haven’t been told, but that need to be told.

What was most difficult about making this film?

The biggest challenge is how to keep the science involved from boring the audience. The answer was animation that could distill the science in a style that would be engaging and clear. It took a long, long, long time trying to find that artist. I spent hours going to animation festivals, looking for animation online. I spent my life on YouTube. Then it came to me by surprised at an exhibit in San Francisco. The animation team was French, Myrzk and Moriceau. I’ve never met them. I’ve never actually talked to them. I just sent them the film, they produced the art, and it was all exchanged and uploaded through computer files. The fact that the animation team, even from afar, understood it so well shows just how much dyslexia transcends all cultures.

What do you hope parents and kids take away from this film?

For kids, that the challenge of learning to read is not the end of academic potential. They shouldn’t be ashamed about their spelling or reading skills, because when they get into high school other talents will rise to the surface. For parents? Be patient. Just because it may be hard in second grade for your child, that doesn’t mean it will always be hard for your child life. As children get older the ways they learn to cope and adjust will help them later on. Learning is a process. It’s the end-goal of effective and critical thinking that you want to get to. We’re so comparative as Americans. We assess ourselves according to the norms that exist. I hope more people will embrace not being in the norm. It’s not such a terrible thing in the long-run

NJ Senate President Sweeney wants to prevent hospitals from denying organ transplants to people with disabilities

2012-01-21T22:32:00.000-05:00

From The Star-Ledger in NJ:

TRENTON — Outraged over reports about a renowned hospital in Philadelphia declined to perform a kidney transplant on a Camden County child because she is intellectually disabled, Senate President Steve Sweeney said Jan. 19 he planned to introduce a bill making it illegal for a New Jersey hospital from denying life-saving health care to disabled people here.

The parents of 3-year-old Amelia Rivera (pictured) of Stratford said a physician from Children's Hospital of Philadelphia told them last week the child would not be eligible for a kidney transplant because she is "mentally retarded."

"There is no doubt that this story has highlighted a seriously overlooked issue in the country: Hospital policy regarding organ transplants for people with developmental disabilities," said Sweeney, whose daughter has Down syndrome.

"People with developmental disabilities should not be treated as second-class citizens,'' he said."Their disabilities do not make them any less human or worthy of respect and common decency. I will immediately be putting forward legislation that would prevent this kind of treatment from ever happening to someone who seeks care at a hospital in New Jersey."

In a statement, the hospital said it has yet to review the proposed bill.

"Senator Sweeney has been a longtime friend to CHOP and shares our interest in providing children with access to the best medical care available," according to a hospital statement. "Although we have not had an opportunity to review the proposed legislation, we agree with Senator Sweeney that the issue of non-discrimination is an important one and we look forward to working with him on this important matter."

According to the blog post written by Chrissy Rivera, her daughter has Wolf-Hirschhorn syndrome, a rare genetic defect that can cause physical and mental disabilities. Her blog may be found at http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls/

Céline R. Fortin, associate executive director of the Arc of New Jersey, said she's never heard about a New Jersey hospital or doctor refusing to provide an organ transplant to a person with developmental or intellectual disability.

But knowing that discrimination can occur, The Arc has produced a position paper on the topic. "A person with a disability should have an equal opportunity to receive life sustaining treatments including organ transplants,'' according to the Arc's position paper. "People with intellectual and/or developmental disabilities deserve access to health, mental health and dental professionals who have received specialized training to understand and respond to their needs."

"If the facts are as they have been reported" about Children's Hospital, "then it's outrageous,'' Fortin said, adding that she has advised people to be cautious about jumping to conclusions because the hospital has not commented directly on the case. "We only know one side of the story."

"Sins Invalid: An Unshamed Claim to Beauty," a short film project from San Francisco, needs your help to finish production

2012-01-18T23:15:00.000-05:00

from the Sins Invalid Kickstarter page, where you can support the film:

Sins Invalid is a San Francisco/Bay Area based performance project that celebrates artists with disabilities, centralizing artists of color and queer and gender-variant artists. Since 2006, our performances have explored themes of sexuality, embodiment, and the disabled body, impacting thousands through live performance.

We’ve consistently heard from people who can’t make it to the SF/Bay Area that they want to experience Sins Invalid. Enter Sins Invalid – The Film.

We are on the verge of completing a 41-minute film that reflects our groundbreaking performance work, weaving interviews of artists and co-founders alongside unreleased performance footage to serve as an entryway into the absurdly taboo topic of sexuality and disability – and we want YOU to walk through that door with us!

Why Sins Invalid? We know that the world of enforced and embodied norms constricts all of us, regardless of where we identify on the spectrums of sexuality, gender, or ability. In this project, people with disabilities are engaging in the wholeness of our bodies and our sexualities. When people experience our shows they are deeply impacted -- not only do people think differently about disability, they leave thinking differently about themselves:

“I am moved beyond words, moved to an emotional state that I can’t quite explain. Thank you for making this space possible!”

“Poignant, moving, REAL.”

“One of the most powerful shows I have been to ever. The creativity and expression and depth literally took my breath away.”

With this film, we can magnify our message that ALL people and communities are beautiful and valuable. Imagine how many more lives and communities would change if people engaged in that simple message!

What We Have and What We Need

We’re in the final stages of production. We are committed to completing the film – so committed in fact that we are donating personal resources to move it forward. As Kickstarter contributors, you know that artists stretch a dollar to make $100 worth of creativity happen. We’re stretching but we still need you to premiere this film!

Your contribution will help lead us through the end stages of film production:

sound editing and creating music
correcting the color
adjusting the titles
beginning the distribution launch

Our dream is that together we raise beyond our $15,000 goal so that this film is viewed as widely as possible and is accompanied by a educational packets and a speaker in as many venues as possible.

Please share in the truth that beauty always recognizes itself. Be a part of completing a groundbreaking film on disability, sexuality and beauty!!

Below are the bios of a few of Artists working with Sins Invalid:

- Juba Kalamka is most recognized as cofounder of "homohop" group Deep Dickollective (D/DC), development of the micro-label/distributor Sugartruck Recordings, and direction of PeaceOUT World Homohop Festival (2002 - 2007). He received a 2005 Creating Change Award from the National Gay and Lesbian Task Force for his activist work in queer music community. He recently appeared at Life Is LIVE 3 (Berlin, Germany) and is included in the lyric compendium The Anthology of Rap (Yale University Press, 2010).

- Nomy Lamm is a writer, musician, and activist whose work has been featured in magazines, anthologies and onstage across the U.S. She has toured with Sister Spit, the Sex Workers Art Show, and the cabaret showcase Dr. Frockrocket’s Menagerie and Medicine Show. She has released two solo albums (Anthem, 1999, and Effigy, 2002) and co-wrote, co-produced and performed in The Transfused, a post-apocalyptic rock opera about multigendered animal-human hybrids, in 2000. She teaches voice lessons, and is currently working on her first novel, The Best Part Comes After the End. (http://www.nomylamm.com/)

- Leroy F. Moore Jr. is a co-founder and performer for Sins Invalid shows. He is a Black disabled writer, poet, community activist and feminist. Leroy is the author of a spoken word CD and chapbook entitled Black Disabled Man with a Big Mouth & a High IQ, and his poems and articles have appeared in numerous publications. His film-based collaboration with Todd Herman on disability and sexuality resulted in the internationally award-winning work Forbidden Acts. Leroy lectures regularly on the intersection of race and disability and is the founder of the Krip-Hop Project, which produces hip-hop mixtapes featuring disabled hip-hop artists from around the world.

- seeley quest has been actively performing, organizing shows and m.c.'ing around the Bay Area since 2001, and has also featured at the last True Spirit Conference in D.C., at Trans/Giving in L.A., in Vancouver, Toronto, and many U.S. cities and colleges with the Tranny Roadshow.

- Aurora Levins Morales is a nationally known writer whose work has been widely anthologized and taught. She was a contributor to the groundbreaking 1981 collection This Bridge Called My Back: Writings by Radical Women of Color. Her fiction has appeared in Ms and The American Voice and four collections of Latina/o writing. She is also a frequent contributor to the Jewish feminist journal Bridges. Her first book, Getting Home Alive (Firebrand Books, 1986), written with her mother, Rosario Morales, was hailed as "a landmark in Puerto Rican literature" and "the most important book to come out of the diasporas in a generation." Her most recent books are Remedios: Stories of Earth and Iron from the History of Puertorriqueñas (Beacon Press, 1998) a prose poetry retelling of the history of the Atlantic world through the lives of Puerto Rican women and their kin, and Medicine Stories, (South End, 1998) a collection of essays. Her 9/11 poem Shema was broadcast on PacificaFlashpoints news magazine. She is currently working on a novel.

After Children's Hospital of Philadelphia denies it, 'Team Amelia' backs kidney transplant for child with intellectual disability

2012-01-17T19:10:00.000-05:00

From USA Today:

When Chrissy and Joe Rivera walked into a conference room at Children's Hospital of Philadelphia (CHOP) a few days ago, they thought they were going to see a slide show to help them start preparing their 3-year-old daughter Amelia for a kidney transplant.

Instead, a doctor and social worker told the Riveras that Amelia (pictured), who has a rare genetic disorder called Wolf-Hirschhorn syndrome, would not qualify for a transplant because she is "mentally retarded" and has "brain damage," Chrissy Rivera claimed in a blog post Thursday and in phone interviews.

The encounter shocked the New Jersey couple, but so did what happened next: The heavily connected online world of special needs parents kicked into high gear — and put one of the nation's top children's hospitals in a very hot seat. As of late Monday:

•More than 16,000 signatures have been added to an online petition at change.org demanding the hospital allow the transplant.

•Hundreds of complaints — along with some supportive comments for hospital staff — have been left at the CHOP Facebook page.

•More than two dozen bloggers, many of them parents of other children with disabilities, have put up posts supporting the Riveras and criticizing the hospital.

•Tweets using the hashtag #teamamelia continue to spread the story.

"That's the special needs community," says Sunday Stilwell, a Maryland blogger and mother of two boys with autism. She doesn't know the Riveras but started the change.org petition after reading the initial post and thinking "that could be my child," she says.

All the attention appears to have had an impact: Chrissy Rivera said Monday that she and her husband have been invited back to the hospital to discuss a transplant.

Hospital officials also have posted three responses on Facebook. The first, posted Friday, said, in part: "Transplant programs at CHOP have never declined a patient for transplant based solely on their cognitive status and we have performed transplants on many children with disabilities. … We make all decisions regarding eligibility using a non-discriminatory approach, after a multidisciplinary assessment and discussion, which is the standard of practice throughout the country."

The second, put up Monday morning, said: "We hear you. We feel and understand your frustration, but we are unable to comment publicly on individual cases."

In an e-mail, hospital spokeswoman Dana Mortensen did say: "The term 'mental retardation' is not used in any information regarding appropriateness for transplantation. The term 'progressive irreversible brain damage' has been used, and we are currently reevaluating this language given the potential for misunderstanding of our intent."

That appears contrary to one part of Chrissy Rivera's story: She said in her blog post that the doctor who spoke with the family had two pieces of paper, with the words "mentally retarded" and "brain damage" highlighted in "cotton candy pink." Over the phone, Rivera said she and her husband were not allowed to take those papers, but she stood by her story.

The case recalls that of Sandra Jensen, a woman with Down syndrome who fought for, and got, a heart and lung transplant in the mid-1990s. Back then, many transplant centers flatly said people with intellectual disabilities could not handle the self-care regimens required of recipients. Jensen later died of complications, but her case spurred calls for hospitals to consider disabled candidates on a person-by-person basis.

A review published in 2006 found many people with intellectual disabilities fared well after kidney transplants. But 43% of child transplant programs surveyed for a study published in 2008 "always" or "usually" considered developmental delay in transplant decisions. One overriding concern: the scarcity of donated organs and the desire to choose candidates most likely to survive and thrive.

But Chrissy Rivera says the doctor at CHOP said he would not recommend the transplant even if a family member provided the organ, citing Amelia's "quality of life." And the social worker wondered who would give Amelia needed medications 30 years from now, Rivera says.

Donation from a family member or another living volunteer is the option now back on the table, Rivera says — and the only one the family expected to pursue. Citing privacy concerns, hospital officials declined to comment on plans for a new meeting.

The conference-room story Rivera shared is "potentially very disturbing," but probably not uncommon, says David Magnus, director of the Stanford Center for Biomedical Ethics. Without knowing the child's full medical history, it is impossible to know if she's an appropriate transplant candidate, he says.

But "it would be wrong for developmental delay to be the sole basis, morally wrong," and also illegal under the Americans With Disabilities Act, Magnus says. Magnus says he knows of at least one child with Amelia's disorder who had a kidney transplant at Stanford's Packard's Children's Hospital. He does not know how she fared. He points out that kidneys do not last forever in any recipient.

Chrissy Rivera, a 36-year-old high school English teacher, says she hopes Amelia will continue to receive care at CHOP, where she's been a patient since infancy. "We've had many positive experiences at CHOP," she says. "This was one doctor and one social worker."

But she says she and her husband, a real estate agent, understand Amelia could die in six months to a year if she does not get a transplant. Right now, Amelia, who also goes by "Mia," does not talk or walk, but does smile, play, roll around on the floor, interact with people and "love her two brothers to pieces," Chrissy Rivera says. "She's a magnet when people meet her."

The support from so many people who have never met her, she says, "is awesome."

Sundance Channel set to air reality show about four women who use wheelchairs

2012-01-17T16:32:00.000-05:00

From Real Screen:

Sundance Channel has greenlit Push Girls, a 14-episode series from Gay Rosenthal Productions (Little People, Big World) following four dynamic women who, through accident or illness, have become paralyzed from the neck or waist down.

The series, announced during the winter TCA press tour, will follow the four women as they approach different stages of their lives, according to the AMC cable net. Angela is a model recently separated from her husband; multi-talented performer Auti is trying to have a baby with her husband at the age of 42; former competitive swimmer Mia is wanting to try swimming again for the first time since high school; and Tiphany is exploring ways to find her true calling in life.

Push Girls is currently in production and is slated to premiere in April of this year.

“The indomitable spirit of this series will give viewers permission to stare at a world that they may previously have been too polite – or too frightened – to explore,” said Sundance Channel general manager Sarah Barnett. “Sundance Channel allows the ‘Push Girls’ to convey the stark reality of their lives, something our broadminded audience will appreciate. We are remarkably fortunate to get to work with this exceptional group of women.”

“Watching the ‘Push Girls’ tackling life with spirit and confidence is not only inspiring but compelling,” added Rosenthal. “The show challenges perceptions about life in a wheelchair, giving the audience an honest, no-nonsense look into their world. It’s real, it’s outspoken and it’s from the heart.”

Marco Bresaz and Jonathan Grosskopf will serve as executive producers for Sundance Channel

New York City files notice it will appeal federal court decision that requires accessible cabs

2012-01-16T21:42:00.000-05:00

From Capital New York:

On Dec. 30, a little more than a week after Governor Andrew Cuomo and Mayor Michael Bloomberg announced an agreement to bring taxi service to the outer boroughs while making taxis and livery cars more accessible to the disabled, New York City quietly filed notice that it would appeal a federal court decision that imposed an even more stringent requirement for disability access.

On Dec. 23, U.S. District Judge George Daniels ruled that the city, because it regulates the taxi industry and does not require medallion owners to provide "meaningful" access to the wheelchair-bound, violates the Americans with Disabilities Act.

As part of the decision, the judge called for “immediate and full compliance” with the A.D.A.

"The [Taxi and Limousine Commission] must propose a comprehensive plan to provide meaningful access to taxicab service for disabled wheelchair bound passengers," wrote Daniels. "Such a plan must include targeted goals and standards, as well as anticipated measurable results. Until such a plan is proposed and approved by this Court, all new taxi medallions sold or new street-hail livery licenses or permits issued by the TLC must be for wheelchair accessible vehicles."

In other words, New York City cannot sell any non-accessible outer-borough taxi permits until the judge says so.

In a sign that he may not consider the governor's accessibility plan, vague though it is, sufficient, the judge also said, in a footnote: "The recent legislation signed by Governor Cuomo providing for a greater number of wheelchair accessible taxicabs and livery cabs, and the TLC's proposed dispatch system may be steps towards providing meaningful access to the New York City taxicab system to disabled persons who require wheelchairs. However, meaningful access for the disabled to public transportation services is not a utopian goal or political promise, it is a basic civil right. Title II requires immediate and full compliance."

The city has requested a stay of the judge's order. He has yet to rule on its request. So as of now, it's still in effect. That means that even if the state legislature approves the grand compromise announced by Cuomo and Bloomberg last month, which it could do as early as this week, the city still won't be able to move forward with the bulk of its outer-borough taxi plan.

The judge's decision also means the accessibility of New York City's taxi and limousine system is now under two separate forms of oversight: the federal court's and the governor's. Not only must the Bloomberg administration present an accessibility plan to the judge, who must then approve it before the city's outer-borough taxi plans can be put into effect, but the administration must present a similar plan for approval to Governor Andrew Cuomo's department of transportation.

No major city in America has full accessibility.

The compromise announced by Cuomo and Bloomberg on Dec. 20 allows the city to create a new class of 18,000 outer-borough taxis: 14,400 non-accessible outer-borough taxis, and 3,600 accessible ones.

The compromise also allows the city to issue 2,000 regular taxi medallions, which sell for upward of $1 million each and would, theoretically, put more than $1 billion into the city coffers at a time when it is facing a substantial budget deficit.

However, the agreement reached with the governor comes with certain restrictions of its own: in the beginning, the city can sell a mere 400 of those regular yellow-taxi medallions. Only after the Bloomberg administration presents the governor with a plan to improve the overall taxi and limousine fleet's accessible, and the governor approves it, can New York City auction off the bulk of the medallions.

For his part, the judge will approve a plan based on how "meaningful" the access is that it provides. But what "meaningful access" means is kind of up in the air.

The city argues that a dispatch service it wants to set up, one that would allow people in wheelchairs to call 311 and thereby get prompt taxi service, provides meaningful access.

But some disability advocates contend the opposite.

"Meaningful is something that’s not unduly burdensome," said Jim Weisman, general counsel for the United Spinal Association. "So in a hail-a-cab system, where it takes five minutes to get a cab, what’s the equivalence to that? Is it an hour? Is it 20 minutes. I think an hour is burdensome, right? Everyone’s threshold is going to be in a different place, but one thing everyone can agree on is if all taxis are accessible, it would be equivalent."

Golden Globe winner Peter Dinklage dedicates award to injured dwarf tossing victim in Britain

2012-01-16T21:37:00.000-05:00

From The Daily Mail in the UK:

A tribute by a Golden Globe winner has led to a dwarf from Britain Jan. 16 becoming one of the world’s top Twitter trends.

Games Of Thrones star Peter Dinklage (pictured) ended his acceptance speech with a mention of the name Martin Henderson, and the suggestion to 'Google him'.

Millions did. Then within minutes Mr Henderson was a trending topic on Twitter. Those who searched him online found the horrific story.

Mr Henderson is a 37-year-old dwarf and aspiring actor who was left badly injured after being picked up and thrown to the ground by a drunk man.

The attack happened as he stepped outside a pub in Wincanton, in Somerset, to have a cigarette.

Mr Henderson, from nearby Milborne Port, who suffers from achondroplasia dwarfism and spinal stenosis, said his legs went numb after the callous attack.

He said the October 7 attack was inspired by a 'dwarf-tossing' event attended by some members of England's national rugby team.

There was outrage in Britain after the event held on a night out during last year's Rugby World Cup in New Zealand.

England's rugby stars were also seen downing shots as they partied in a Queenstown bar called Altitude, which was hosting a 'Mad Midget Weekend'.

It was also the night that one of them, Mike Tindall, who was newly married into the Royal Family, was captured on CCTV kissing ex-girlfriend Jessica Palmer.

The night out followed a disastrous opening match for the England team, setting the tone for their appalling performance on and off the field during the tournament.

The stars, including Tindall, the husband of Princess Anne's daughter Zara Phillips, were disciplined for attending the event, as well as for other acts of bad behaviour on the tour.

Mr Henderson believes the violence that has put an end to his promising acting career may not have happened it it wasn't for the news about the players' night out last September.

'The England players had been in trouble for going to a dwarf tossing event and this might have given this guy the idea,' he said last week.

But his story was highlighted by Dinklage won best supporting actor in a TV series, miniseries or movie for his performance in the HBO fantasy series Game of Thrones. He earlier won an Emmy for the role.

Games Of Thrones actor Peter Dinklage won best supporting actor, for a TV miniseries drama.

Before signing off with the reference to Mr Henderson, Dinklage revealed how his mother kept him grounded in his acceptance speech.

He said: 'I was talking to my mother in Jersey before I came out, and she said, "Have fun, but have you seen Mildred Pierce? Guy Pearce is so good. He's going to win."

'So I haven't seen Mildred Pierce but I'm sure it's really good, and I just love our moms because they keep us humble.'

Reacting to the name-check, Martin said: 'I could not believe it when I heard I had been mentioned.

'I was totally shocked. It is really odd to think my name was heard by all these actors.

'It is nice to know my message is getting out to people that it is not acceptable to throw dwarves around.

'I have a massive response and it has mostly been really positive.

Martin confirmed he is still awaiting an apology from the England rugby team over the incident - which has left him needing to use a wheelchair for long journeys.

Ten months after becoming the first person to get a full face transplant in USA, Texas man marvels at recovering ability of expression

2012-01-14T22:32:00.000-05:00

From The AP:

FORT WORTH, Texas — Ten months after becoming the first person to get a full face transplant in the United States, a Fort Worth man marvels at recovering the ability of expression.

The progress of 25-year-old Dallas Wiens (pictured) and the handful of other patients that have undergone the procedure is helping to make the case that it should be more widely available.

“The ability to smile and to show emotion on my face, even unintentionally, is such a natural thing,” Wiens told the Dallas Morning News (http://dallasne.ws/xU15Ij ). “Having a new face has changed me dramatically.”

Wiens’ face was burned off in 2008 when his head touched a high-voltage power line while he was standing in an elevated cherry picker. He was also left blind and has not recovered his sight.

He underwent more than two dozen surgeries, but they left him with a featureless face. The transplant changed that.

“I don’t look much different than anybody else,” he said.

Wiens case, and those of two others, were the subject of a study published last month in The New England Journal of Medicine. The procedure can correct “severe deformities in a single operation” rather than years of reconstructive surgery, the study said.

The Department of Defense funded the transplants though a $3.4 million grant with the hope of offering the procedures to wounded soldiers.

Wiens was the only patient of the first three surgeries done in the U.S. who did not suffer an acute rejection of the transplant within the first six months, though all suffered infections.

The first full face transplant was performed in France in 2005. Since then, 18 patients have shown “promising results,” the study said.

The study also weighed in on early concerns that the donor’s facial identity would be transferred to the recipient.

“It is our subjective opinion, as well as that of two of the donor families, that the patients do not look like their donors,” the study concluded. (The third donor family chose to remain anonymous and did not participate in the study.)

Wiens, through physical therapy, can once again do things such as control his lips to drink from a glass. And he regained his sense of smell.

He has had to return to Brigham and Women’s Hospital in Boston a couple times for adjustments to make the face fit more snugly.

“To undergo a face transplant and regain normalcy allows me to do whatever I want to do,” he said. “It’s a journey that I’ve just started.”

Two years later, Haitian amputees still have a long way to go

2012-01-14T09:19:00.000-05:00

From PBS. In the picture, Fymée Diogene and Balnave Ulysee both lost legs in the 2010 earthquake.

Two years ago, a devastating earthquake in Haiti killed more than 200,000 people and caused injuries that required amputations for another 4,000 people. The NewsHour covered the struggle to fit so many with new prosthetic limbs in 2010.

The state of emergency is only now subsiding for Haiti, said Elizabeth MacNairn, executive director of Handicap International. But an ongoing cholera epidemic, widespread poverty, government problems and a hurricane have all held up the recovery process.

Many of those injured by the earthquake are still living in precarious conditions, said MacNairn. Unemployment is still high, and the disabled often live on one meal a day. She said that while Handicap International fitted 1,459 people with orthopedic devices and about 5,600 mobility aids, some disabled Haitians still haven't received needed prosthetics and rehabilitation therapy.

"The emergency is winding down, but it's not over," she said. "There's still a lot of work to be done."

But Kevin Carroll, vice president of prosthetics and orthotics with Hanger Ivan R. Sabel Foundation, says his clinic is performing more maintenance of the prosthetics and orthotics for amputees, rather than seeing busloads of new patients needing aid.

"Six months after the earthquake, we were absolutely packed, inside and outside the facility," he said. "Now we're maintaining new limbs."

Aid organizations are looking at 2012 as a chance to put better infrastructure in place for the amputees in case of future emergencies. Handicap International has constructed more than 1,000 temporary hurricane and earthquake-resistant shelters that are handicap accessible and is working with the Haitian authorities on building more. In addition, the group has prepared stockpiles of emergency equipment such as tents, blankets, walking aids and radios, said MacNairn.

Handicap International also is working with microfinanciers and employment organizations to encourage hiring disabled Haitians, she said.

"Part of our functional rehabilitation is to make them able to complete daily living tasks -- cooking, washing, writing -- which increases their self confidence," she added. And that translates to being able to work outside the home to support their families.

The earthquake left major destruction, but there have been some silver linings, said Carroll. Haitians clinicians and technicians now are better able to treat and serve amputees and the disabled with the help of aid agencies, and those organizations have learned how to better implement training during a crisis, he said. And therapeutic access for all disabled Haitians has improved, he added.

In addition, disability has gained visibility in Haiti, said Carroll. Amputee children have formed soccer teams and George Exantus, who dances with an artificial leg, is getting ready to compete again. He makes a living teaching dance classes.

Carroll said Hanger will stay as long as Haiti, a neighbor to the United States, needs help. "They're 90 minutes away from where I live. It's a shame if we can't help our neighbor," he said.

Religious school can claim “ministerial exception” to discrimination charge under the Americans with Disabilities Act for teacher who also taught secular subjects, U.S. Supreme Court rules

2012-01-13T18:51:00.000-05:00

From Business Insurance:

WASHINGTON — A religious school can claim a “ministerial exception” to a discrimination charge under the Americans with Disabilities Act for a teacher who also taught secular subjects, the U.S. Supreme Court ruled unanimously Wednesday.

However, in its decision in Hosanna-Tabor Evangelical Lutheran Church and School vs. Equal Employment Opportunity Commission et al., the nation's highest court said the ministerial exception bars only employment discrimination lawsuits.

“We express no view on whether the exception bars other types of suits, including actions by employees alleging breach of contract or tortious conduct by their religious employers. There will be time enough to address the applicability of the exception to other circumstances if and when they arise,” Justice John Roberts wrote for the court.

One attorney said the ruling will result in fewer lawsuits by employees of religious institutions, while another lawyer said the Supreme Court's ruling still leaves some questions unanswered.

The ruling concerns Cheryl Perich, who worked as a “called” teacher and was designated a commissioned minister after completing certain academic requirements, including a course of theological study. In addition to teaching secular subjects, she taught a religion class, led her students in daily prayer and devotional exercises, and took her students to a weekly chapel service for the entire school.

Ms. Perich was terminated in 2005 after the school refused to reinstate her after a disability leave, although a doctor said she could return to work with no restrictions. She then filed suit, claiming discrimination and retaliation under the ADA.

A lower court agreed with the school that it was entitled to a “ministerial exception” to the ADA and dismissed the case.

However, in its unanimous opinion in 2010, the 6th U.S. Circuit Court of Appeals in Cincinnati disagreed, stating that “legislative history makes clear that Congress intended the ADA to broadly protect employees of religious entities from retaliation on the job, subject only to narrowly drawn religious exemption.” Ms. Perich's participation in some religious activities “does not make her primary function religious,” the appeals court said.

In overturning the appeals court, the Supreme Court said that while it has not ruled on this issue until now, it agrees with appeals court rulings that there is a ministerial exception grounded in the First Amendment.

“The members of a religious group put their faith in the hands of their ministers. Requiring a church to accept or retain an unwanted minister, or punishing a church for failing to do so, intrudes upon more than a mere employment decision. Such action interferes with the internal governance of the church, depriving the church of control over the selection of those who will personify its beliefs,” the high court ruled.

The ministerial exception applies in this case based on “the formal title give Perich by the church, the substance reflected in that title, her own use of that title and the important religious functions she performed for the Church,” the court ruled. “We conclude that Perich was a minister covered by the ministerial exception.”

“When a minister who has been fired sues her church alleging that her termination was discriminatory, the First Amendment has struck the balance for us. The church must be free to choose those who will guide it on its way,” the court ruled.

Gerald L. Maatman Jr., a partner with Seyfarth Shaw L.L.P. in Chicago, characterized the opinion as a “courthouse door closer”—meaning that the ruling will make it more difficult for church employees to find counsel to litigate their cases—“because the ministerial exception is given a very broad reading. And given the circumstances and facts in its case, it seems difficult for anyone to get around the ministerial exception, practically speaking.”

However, said Jeffrey A. Pasek, a defense attorney with Cozen O'Connor P.C. in Philadelphia, the opinion did leave “open how far religious organizations can go in the future in defining categories of employees who are ‘ministers.'''

In this case, Mr. Pasek said the plaintiff was a “called teacher” who performed the same duties as lay teachers. “It's not clear whether the court's decision would extend to them as well,” he said.

“In recent years, there have been dozens of these ministerial exemption cases that have been working their way through the state and federal courts and have involved positions ranging from bookkeepers at community centers to individuals who performed primarily laboring duties as a precursor to entering into pastoral study, Mr. Pasek said. “The court's decision doesn't address which, if any, of those kinds of positions might be able to qualify for a ministerial exemption in the future.”

In Australia, wheelchair-using passenger loses access case against Jetstar

2012-01-13T14:55:00.001-05:00

From the Sydney Morning Herald in Australia:

A 78-year-old woman has lost her lawsuit against Jetstar over the airline's refusal to allow her on a flight between Adelaide and Brisbane because she was confined to a wheelchair.

Sheila King now faces significant financial hardship after being ordered to pay a substantial part of the airline's legal costs.

Mrs King booked her flight over the internet in August 2008 but was contacted the next day and told she would not be able to fly on that day because there were already two passengers requiring wheelchair assistance booked on the flight.

She was told Jetstar had a policy of only allowing a maximum of two wheelchair-reliant passengers on any flight.

She took the low-budget airline to the Federal Court, claiming it discriminated against her by treating her less favourably than a passenger who did not have a disability.

However, Federal Court Judge Alan Robertson found that Mrs King failed to select "wheelchairs" under a special section on the website.

He also found that the airline offered her another flight on the same route, but Mrs King refused.

"In my view Jetstar did not discriminate against Mrs King, being a person with a disability because of the fact that she ... possessed a wheelchair," Justice Robertson said.

Mrs King has had post-polio syndrome since childhood and has been in a wheelchair since 2008 after a car accident that resulted in three crushed vertebrae and three broken ribs.

She has been ordered to pay the legal costs of the airline, although this figure has been capped at $20,000 because the case was deemed to be in the public interest.

Joanna Shulman, CEO of Redfern Legal Centre, who advised Mrs King during her legal battle, said today's ruling demonstrated that Australia's discrimination laws were not strong enough to protect the rights of people with disabilities.

"The laws do not achieve equality of access to transport for people with a disability," Ms Shulman said.

"Access to transport is vital for people with a disability. Limitations on access to transport can affect a person's ability to work, access health services, spend time with family or enjoy travel. Urgent reform is therefore needed to ensure equal access is achieved."

"The Federal Government is currently reviewing Australia's discrimination laws. Mrs King's experience demonstrates that these laws need to be strengthened in order to ensure that service providers cannot discriminate on the grounds of disability."

Disabled people in Bolivia on the march in quest for equality

2012-01-12T00:43:00.000-05:00

From The Guardian in the UK:

A group of disabled people in Bolivia is walking 1,400km, from Trinidad to La Paz – a route taking in both tropical climates and snow-capped mountains – to demand state benefits and an end to discrimination.

"We are asking for a law that gives us special recognition and a yearly allowance of 3,500 bolivianos [about £325]," says Carlos Mariaca, who is leading the caravan of 120 people – 75 of whom have disabilities, with the remainder being members of local NGOs and wheelchair monitors - to Bolivia's main city.

Mariaca, 42, a quadriplegic who can only move a few fingers and tilt his head, spoke to the Guardian as his group – which is expected to reach La Paz in mid-February – approached the town of Buena Vista in eastern Bolivia.

The participants set off on 15 November from the city of Trinidad, further north, and have already covered more than 500km, counting on support and charity from the residents in the towns along their route.

"They give us rice, pasta, coffee, sugar and bread," says Mariaca, who has been using a wheelchair for more than 30 years. "But sometimes we sleep under a tree or wherever we can find free accommodation."

Living with a disability in Bolivia is not easy, especially if you are poor. Very few buildings and streets are accessible by wheelchair. According to Lucio Álvarez, an expert on disabilities at the medical faculty of La Paz's public university, even this is not the greatest cause for concern.

"Social stigmas are the most serious," says Álvarez. "People suffer serious discrimination. Even teachers, police officers and doctors don't know how to deal with a disabled person."

There is no precise data on how many Bolivians live with a disability. The ministry of health lists approximately 35,000 people nationwide, but human rights groups believe the number to be as high as 600,000, or 6% of Bolivia's population.

Álvarez admits that without exact numbers it is difficult to implement national policies to help people with disabilities. Nonetheless, he says, it is hard to ignore their situation.

He tells the story of a small disabled child who was rescued by the police after being found in a pig barn surrounded by a wall of thorns. The child's mother had placed the thorns around her so she would not move and roll over while she was at work.

"If we look at this from a western point of view," says Álvarez, "this is a barbarity. But in a situation of extreme poverty like this, the mother really had no other option. If she stayed with her baby, they would have both died of hunger."

Javier Salguero, who heads the ministry of justice department that deals with people with disabilities, dismisses accusations that the government of President Evo Morales is not concerned about what, he admits, is a marginalised sector of society.

"It is a priority of our president to attend to their needs," said Salguero, adding that 40m bolivianos ($5.8m) is being spent to train teachers, offer job training and placements to people with disabilities, and help with legal needs. "We have a national plan in place that will guarantee equality in education, health, work and housing."

Salguero insists that offering a state benefit, similar to the incentives provided to poor parents for sending their children to school, would be counterproductive. He believes people with mental disabilities, for example, would find it difficult to manage their money. "What we want to do is offer programmes that improve their situation," he says, "and not give them cash that they would spend in less than a month."

However, the protesters disagree and are determined to make their voices heard. Ahead of them on their journey to La Paz lie the Andes. It is the rainy season in Bolivia now, and the ascent to the city will be treacherous. "Our caravan will not be detained, and we will go on no matter the cost," says Mariaca.

And if the politicians do not listen, he says, they are ready to go not only to all the countries in Latin America, but "all the way to the United States, to denounce our government … [for] ignoring the plight faced by people with disabilities in Bolivia".

A sign language interpreter glove that links to your smartphone

2012-01-12T00:29:00.000-05:00

From The Atlantic:

A team of three developers, Oleg Imanilov, Zvika Markfeld, Saron Paz, and Tomer Daniel, have developed a novel sign language interpreter glove.

The prototype glove, which was demonstrated at a recent Google developers event in Tel Aviv, incorporates a number of sensors to detect hand gestures which are then interpreted via a smartphone app to produce text.

Flex sensors embedded in the fingers of the glove detect finger position while an accelerometer and tilt sensor detect hand movement and orientation as demonstrated in the video below.

It is not clear how many gestures the system can interpret and the device would seem to be an early proof of concept. However, it could offer a simple and cheap interface for people not versed in sign language to easily communicate with the hearing-impaired.

Tampa, Florida ordinance aids disabled drivers at gas pump

2012-01-10T11:30:00.000-05:00

From The Tampa Tribune:

TAMPA -- Kevin Poindexter (pictured) pulled the red 2000 Chrysler Town & Country minivan up to pump 7 at the Mobil gas station on Busch Boulevard and 46th Street and began what for him is an ordeal.

A wheelchair user, he hit a lever in the van that opens the sliding side door and another that lowers a ramp. He moved out of the drivers seat, into the chair and rolled down the ramp, which extends about five feet from the van.

"I hope no one runs over my ramp," he said. "I had that happen before when someone pulled up right behind me, then tried to drive around me instead of waiting."

Poindexter wheeled into the store, up to the attendant and paid for gas.

As he did, a man in a pickup with a long utility trailer pulled up to the pump behind Poindexter. After a few minutes in the store, Poindexter wheeled back and began pumping, all the while, he said, thinking back to last year when an impatient driver destroyed his ramp.

Poindexter, a Navy veteran, survived his service to the country intact. But he has been confined to a wheelchair since 1997 after being shot in the back as someone tried to carjack him in Chicago while he was on leave.

For most people, filling up the gas tank is no big deal. Pull up to the pump, get out, pay, gas up and go.

But for Poindexter and other disabled drivers, a trip to the gas station is inconvenient at best and dangerous at worst.

Some relief arrived Jan. 1 for the more than 63,000 drivers in Hillsborough County who, like Poindexter, have permanent handicap stickers for their vehicles.

Thanks to an effort by Paralyzed Veterans Of America — of which Poindexter is a member — and County Commissioner Sandy Murman, Hillsborough County now requires gas stations to provide a number at the pump that handicapped motorists can call to get an attendant to come out and pump gas for them.

Murman and representatives of other disability groups say the ordinance appears to be the first of its kind in the nation.

Though federal law requires stations with two or more attendants to pump gas for handicapped motorists, the law does not specify how stations should comply.

Some have call buttons. But those are often placed so high that someone in a wheelchair can't reach them, Murman said.

Some stations do nothing at all, she said, and handicapped drivers are often forced to resort to "honking, waiving their handicapped cards trying to get attention."

That often doesn't work.

"The new ordinance fills in a big gap in the federal law," she said.

Murman, whose brother Richard Murman had Down syndrome and passed away a few years ago in a group home at age 56, is a supporter of efforts to help people with disabilities.

She said she opted to back the gas pumping assistance ordinance after hearing from Sandy Sroka, the county's Americans with Disabilities Act coordinator, who told her of the problems handicapped motorists experience.

The ordinance is the brainchild of Ben Ritter, government relations director for the Florida Gulf Coast Chapter of the Paralyzed Veterans of America. He said he wanted an equitable solution, not just for veterans, but for all handicapped drivers. Nearly 7 percent of the county's 940,000 licensed motorists have a permanent handicap sticker, according to the Florida Department of Highway Safety and Motor Vehicles.

A 70-year-old retired Marine sergeant who was paralyzed from the chest down after a post-service surgery went awry, Ritter said the idea came to him about four years ago after being unable to reach a call button at a gas station.

"My background is in sales and marketing, said Ritter, a real estate broker. "Sometimes, the common-sense, easiest solutions work best."

Ritter's solution was to require stations to display placards at the pumps carrying the International Symbol of Accessibility logo — the white wheel chair on a blue background — with a number to call to get an attendant, as federal law requires.

"It is easy and inexpensive," Ritter said.

Mike Aldred, sales manager for J.H. Williams Oil, likes the idea.

"It is easy to implement, not costly, and a simple plan," Aldred said.

About 18 months ago, Ritter contacted the company and they agreed to test the program at their Citgo station at 19th Street and Adamo Drive.

Aldred said the company spent about $100 on the placards and gets about four or five requests a week.

"It was simple. It worked and is really something that needs to be done everywhere," said Aldred.

The Hillsborough ordinance has no penalty provision, said Murman. "If we find there is a problem complying, we may come back and address that later," she said.

After pumping his gas, wheeling back into his van, hopping back into the driver's seat and hitting the levers that roll up the ramp and shut the side door, Kevin Poindexter said he appreciates the new rule.

"The gas pumping ordinance will be very helpful," Poindexter said.

FOX drama 'Alcatraz' adds 'Deadwood' star Geri Jewell

2012-01-10T10:13:00.000-05:00

From Digital Spy:

Geri Jewell (pictured) has joined the cast of upcoming Fox drama Alcatraz.

Jewell - known for her role in NBC sitcom The Facts of Life - will play the sister of deputy prison warden EB Tiller (Jason Butler Harner), according to TVLine.

The character will appear in a series of 1960s-set flashbacks that follow Tiller's early days at the famous island prison.

Jewell, who was born with cerebral palsy, also starred on HBO's Deadwood between 2004 and 2006.

Rookie Blue star Eric Johnson and Caprica actor Michael Eklund have also signed up for roles on Alcatraz.

Sam Neill recently claimed that his own character Emerson Hauser is morally ambiguous, calling the government agent "lethal, bad and dangerous to know".

Alcatraz premieres on Monday, January 16 at 8/7c on Fox. The show will air on Watch in the UK.

Fox announces new series "Touch" will revolve around 9/11 widower, son with autism

2012-01-09T19:41:00.000-05:00

From the FOX network:

"Touch" will have a Series Preview WED 9/8c JAN 25.

We are all interconnected. Our lives are invisibly tied to those whose destinies touch ours.

This is the hopeful premise of the new drama TOUCH from creator and writer Tim Kring ("Heroes," "Crossing Jordan") and executive producers Peter Chernin (NEW GIRL, TERRA NOVA) and Katherine Pope (NEW GIRL, TERRA NOVA).

Blending science, spirituality and emotion, the series will follow seemingly unrelated people all over the world whose lives affect each other in ways seen and unseen, known and unknown. At the story's center is MARTIN BOHM (Kiefer Sutherland), a widower and single father, haunted by an inability to connect to his emotionally challenged 11-year-old son, JAKE (David Mazouz). Caring, intelligent and thoughtful, Martin has tried everything to reach his son. But Jake never speaks, shows little emotion, and never allows himself to be touched by anyone, including Martin. Jake is obsessed with numbers-writing long strings of them in his ever-present notebooks-and with discarded cell phones.

Social worker CLEA HOPKINS (Gugu Mbatha-Raw) believes that Jake's needs are too serious for Martin to handle. She sees a man whose life has become dominated by a child he can no longer control. She believes that it's time for the state to intervene. So Jake is placed in foster care, despite Martin's desperate objections.

But everything changes after Martin meets ARTHUR TELLER (Danny Glover), a professor and an expert on children who possess special gifts when it comes to numbers. Martin learns that Jake possesses an extraordinary gift-the ability to perceive the seemingly hidden patterns that connect every life on the planet. While Martin wants nothing more than to communicate directly with his son, Jake connects to his father through numbers, not words. Martin realizes that it's his job to decipher these numbers and recognize their meaning. As he puts the pieces together, he will help people across the world connect as their lives intersect according to the patterns Jake has foreseen.

Martin's quest to connect with his son will shape humanity's destiny.

TOUCH is a production of Chernin Entertainment and Tailwind Productions, in association with 20th Century Fox Television. Tim Kring created the series and wrote the pilot. Kring, Francis Lawrence ("Water for Elephants"), Peter Chernin, Katherine Pope, Kiefer Sutherland, Suzan Bymel ("The War at Home") and Carol Barbee ("Jericho") are executive producers. Lawrence directed the pilot.

Deaf percussionist Dame Evelyn Glennie bangs the drum in 3D film about science of sound

2012-01-08T23:04:00.000-05:00

From The Scotsman:

As the world’s foremost percussionist she has performed with symphony orchestras and the cast of Sesame Street, but now Dame Evelyn Glennie (pictured) is set to hit the big screen.

The Grammy Award-winning instrumentalist is to star in a 3D film which will be shown in cinemas around the globe.

The Aberdeenshire virtuoso, who is profoundly deaf, will narrate and perform in Just Listen, a production which explores the science of sound.

The Scot has already travelled to Vancouver to begin shooting the film, which is due to be screened in IMAX cinemas worldwide.

The movie will showcase Glennie’s live performances alongside images of bats, bottle-nosed dolphins and whales.

Glennie has expressed her delight at the prospect of becoming a film star at the age of 46. The Royal Academy of Music graduate said: “The moment I learned about the incredible science in this film I knew I had to be involved.

“I am really quite fascinated by echo-locating bats and dolphins and have always wondered how sound affects the unconscious brain.”

Producer Brad Lisle said the manner in which the musician overcame her lack of hearing made her the perfect person to front the project.

The president of US film company Foxfire Interactive said: “This is a story about the science of sound and Evelyn has a unique way of experiencing sound.

“We believe her inspirational personality will have a huge impact on the people who will watch the film globally and show children, in particular, that anything is possible.

“Her role as narrator and performer will transport audiences to places they have never been before and inspire them to listen more closely to the world around them.”

Filming for the Firefox production has already begun in Canada. The film’s promotional website, which is due to be launched later this month, describes the project as “an extraordinary feast for the ears and the eyes.”

It states: “Follow Evelyn Glennie, who happens to be deaf, on a scientific journey into the pulsating sounds of our planet.

“Fly through the echo-location world of bats, swim with singing humpbacks and decipher the language of the bottle-nosed dolphin.

“Discover how sound affects our breathing, heart rate and brain waves and listen to the pulse of our earth with seismologists.”

Glennie, who has been profoundly deaf since the age of 12, grew up on a farm near the town of Ellon, in the north-east. She was initially rejected by the Royal Academy of Music in London on account of her lack of hearing, but successfully appealed and proved herself to be a major talent. Her work was recognised by the Queen in 1993 when she was awarded the OBE, and in 2007 when she became a Dame.

The Ambassador for the Royal National Children’s Foundation made an appearance on the educational US children’s show Sesame Street in 2001, where she played percussion on Oscar the Grouch’s metal bin.

Last year she performed on the CBeebies musical show ZingZillas.

Discredited autism study author Andrew Wakefield sues medical journal for defamation

2012-01-08T20:33:00.000-05:00

from CNN:

A doctor whose research on autism has been discredited by many medical authorities is launching a lawsuit against the British Medical Journal, as well as a freelance journalist and one of the journal's editors.

Dr. Andrew Wakefield is the author of a controversial 1998 autism study and has linked the measles, mumps and rubella (MMR) vaccine to causing autism. In his lawsuit, he alleges that the British Medical Journal (BMJ), and specifically writer Brian Deer and editor Dr. Fiona Godlee, defamed him. They have made "unfair, incorrect, inaccurate and unjust criticisms of findings previously reported by Dr. Wakefield and 12 other co-authors," a petition filed in Travis County, Texas, states.

Wakefield's medical license was taken away in Britain in 2010 after a lengthy investigation into his research on children with autism.

One year ago this week, the British Medical Journal published the first of a series of articles calling Wakefield's controversial research fraudulent. They accused Wakefield of misrepresenting or altering the medical histories of all 12 of the patients involved in the 1998 study. Deer, the author of the articles, said last year he thought Wakefield should face criminal charges.

Wakefield's petition denies that Wakefield fraudulently and intentionally manipulated or falsified data or diagnoses in the study published in the journal Lancet in 1998. Twelve years later, in February 2010, three months before Wakefield lost his licence, the Lancet retracted the 1998 study because they said it became clear parts of the paper were "incorrect."

The petition states that this "malicious publication of the false statements about Dr. Wakefield" continue to cause damages such as "injury to character and reputation, humiliation, injury to feelings, and loss of earning capacity."

CNN's Dr. Sanjay Gupta questioned Wakefield in 2011 - watch here.

Deer told CNN Friday he has not received the petition, although he is aware of its existence. A statement on behalf of Deer and the British Medical Journal defended what had appeared in the journal previously: "While we await formal service, unsurprisingly the BMJ and Mr. Deer stand by the material published in the BMJ and their other statements and confirm that they have instructed lawyers to defend the claim vigorously."

The petition cites interviews Deer did with CNN's Anderson Cooper 360 and CNN's American Morning in 2011 among examples of defamatory statements made by Deer. CNN is not implicated in the petition. It also takes issue with an editorial written by Godlee calling Wakefield's paper "an elaborate fraud."

Wakefield has brought claims and made complaints against Deer, as well as other news outlets, in relation to the Lancet study, but none of these have been successful, the British Medical Journal statement said.

A call to Wakefield's lawyer was not immediately returned.

Wakefield now lives in Austin, Texas, the petition said.

CNN legal analyst Jeffrey Toobin finds it surprising that Wakefield would launch this lawsuit in the United States instead of Great Britain, because with the freedom of the press, it's harder to win a libel suit of this nature in the U.S.

Dad's blog post about Target ad with his son with Down syndrome makes ABC news.

2012-01-08T19:56:00.000-05:00

From ABC News:

A recent Target ad featuring a child model with Down syndrome is helping one dad blogger raise awareness about the chromosomal condition.

This week, Rick Smith praised it on his blog, NoahsDad.com, which tells the story of the Smith’s life with his son Noah, who has Down syndrome.

Smith gratefully described how Target had included someone with a disability without making a big deal about it.

The story of the Target ad as well as Smith’s post has gone viral, spreading through the media and resulting in the post receiving more than 16,000 Facebook likes, more than 3,000 tweets and 261 comments, Smith said.

Spreading along with it is the core message of NoahsDad.com: “Down Syndrome is OK.” Everything is fine with Noah. Advertisers and TV shows like “Glee” are getting it, and — perhaps most important to Smith — so are parents.

In a section on the blog titled “Our Story,” Smith reveals how he himself absorbed that message. After the shock and confused sorrow following the news about Noah, Smith, a self-described “tech guy,” went online to learn what his life would be like.

“The videos were all so weird and sappy,” he said. ”People need to know it’s not this sad thing,” Smith said he told himself.

Smith bought the Apple video-editing program Final Cut Pro and with his iPhone as a camera, started shooting one one-minute video of Noah each day.

Sometime in May, NoahsDad.com was born.

“It took off like crazy, with people all over the world, on pretty much every continent,” Smith said.

In one third-world village, Smith said fans used video of Noah’s physical therapy as a guide for giving therapy to people with Down syndrome, because they didn’t have access to it themselves.

Another blog visitor, who was preparing for the likelihood of having a Down syndrome child, wrote to Smith to say he watched Smith’s videos every night with members of his family to learn and take comfort.

Most of the blog’s content is simply Rick Smith’s accessible, funny descriptions of the one-minute videos showing everyday life with Noah.

“Fear is very crippling,” Rick Smith said. “If we can just show you what life can be like, take away that fear for you, you can have courage.”

Smith said that “90 percent or 92 percent, depending on the study” of parents who learn through prenatal screening that they have a relatively high chance of having a child with Down Syndrome abort the pregnancy.

A new blood test, less invasive and risky than amniocentesis, makes it easier than ever to screen for Down syndrome, he said.

“Unapologetically, one of the main purposes of the blog is to encourage these parents to follow through with the pregnancy,” Smith said.

“I’m not yelling or picketing outside an abortion clinic,” he added. “I’m more creative. I believe in the power of story, of inviting people into our story.”

NoahsDad.com integrates Smith’s life and faith with his strong interest in social media. A self-described “early adopter,” Smith was one of the first people on Twitter, he said.

“God has given us these tools to reach people,” he said. “How can we use them to further good in the world?”

He recently blogged about a couple featured recently on ABC World News who adopted a girl from Ukraine, where Down syndrome children were found living in adult mental institutions.

“They’re treated like outcasts,” Smith said. “Families are embarrassed by them. It’s so heartbreaking.”

Ireland's first arts festival dedicated to promoting mental-health awareness opens in Dublin

2012-01-08T19:53:00.000-05:00

From The Irish Times:

The country's first arts festival dedicated to promoting mental-health awareness has opened in Dublin with a wide range of music, film, theatre and more promised over the next two weeks.

A number of specially commissioned art works have been created to coincide with the start of First Fortnight 2012, which takes place in and around Temple Bar.

The festival is being staged in association with See Change, a Government-backed initiative that seeks to challenge discrimination on mental health issues, and is sponsored by the Ticket .

Among the highlights of the festival programme is a concert with Cashier No 9, Le Galaxie and Royseven, whose single We Should Be Lovers was the most-played Irish single on radio here last year.

Other highlights include a series of new short films from directors such as Hugh O'Connor and Mary Redmond, a number of visual art and photography exhibitions and two performances of 565+ , a play which tells the story of how one woman sought solace in the theatre when struggling with depression.

The two-week festival programme begins tonight with the first of three 'Therapy Sessions’ which feature a mix of poetry and spoken word performances accompanied by live music from acts including the Delorentos and We Cut Corners.

First Fortnight is a volunteer-based project which began with a one-day event in 2010. The project is so named because the first two weeks of the year is a period that is generally perceived to be a particularly difficult time for those suffering from depression or suicidal thoughts.

The project's founder JP Swaine said he was hopeful the festival's programme would entice people to come along and take part.

"We hope people come to First Fortnight because this is a genuinely high-quality programme of arts events. That way we hope they will go into the year ahead touched by a really strong message about reducing the stigma that surrounds mental health and hopefully go forward with some confidence into 2012 to be the change they want to see,” he said.

A showing of the acclaimed documentary The Devil and Daniel Johnston will take place at the IFI on Saturday as part of the festival. Johnson, a musician and artist, who has had an ongoing struggle with manic depression, has shown his support for the event by making one of his artworks available for use as a limited-edition once-off festival T-shirt.

Almost one-quarter of Irish people have personal experience of mental illness or a suicide in their peer group, according to the recently published Global Health Survey 2011. However, many individuals experience widespread prejudice with an Amnesty Ireland survey showing that 95 per cent of people who have mental health problems said they have been treated unfairly because of their condition.

See Change campaign manager Kahlil Thompson-Coyle said she was hopeful the festival would become a regular event.

"We're hoping that we can make the first two weeks of the year synonymous with breaking down the stigma associated with mental health problems and show that it's okay to not be okay sometimes."

CBeebies presenter Cerrie Burnell on breaking down barriers for disabled TV talent in Britain

2012-01-07T21:14:00.000-05:00

From the Manchester Evening News in the UK:

Cerrie Burnell (pictured) doesn’t see herself as a role model. As one of the most high-profile disabled TV presenters in the UK, the term is often attached to her by others. But the 32-year-old says: "Anyone who works at CBeebies is seen as a role model by the children who watch it and their parents.

"It’s such a big word. I don’t see myself as a role model. But I like to think I am a sign it is possible."

And what she has proved is possible is for a disabled person to be accepted, adored even, by a broad television audience. In a world where those with disabilities are often discriminated against, ignored and neglected, Cerrie has thrived by being herself.

Born with her lower arm missing, this hasn’t prevented her from becoming one of the most popular personalities on children’s TV. Given the distinct lack of disabled people in the media, it is a notable achievement. hence the role model tag.

"I’ve been very lucky to have been given this opportunity," she says, modestly. "I’m very grateful for it. I’m very happy to be the person who is breaking down barriers."

And just how big those barriers she is smashing are was demonstrated when Cerrie first appeared on

CBeebies in 2009. The reaction from most viewers was positive but some parents complained their children were upset by the sight of the new, one-armed presenter. There was a flurry of emails objecting to her presence and one viewer left an online rant charmingly stating their child was "freaked out" by her appearance.

In the face of such hostility, Cerrie displayed a calmness and inner strength that perhaps she has developed throughout a lifetime of being subjected to stares and comments from strangers.

Today, three years on from her on-screen début, she plays down the reaction and underlines it was a minority who objected. "The BBC received nine complaints," she says, matter-of-factly. "If people are uncomfortable, it comes from naivety. They haven’t been exposed to someone with a disability before.

"If I’ve ever encountered that kind of reaction in my life I’ve found the best thing is to sit down and explain to the person about my disability and let them ask questions."

Now it is hard to imagine anyone objecting to her. She’s a fixture on CBeebies, and for good reason.

Pretty and petite, with wide eyes, and a warm and gentle manner, Cerrie radiates an innocent charm, making her perhaps the perfect presenter for CBeebies, the most popular channel for kids under six years old.

And the reaction from young viewers has been predictably positive. "I think children are very accepting. When they see me on TV I don’t think they see my arm. Other things catch their attention. They might think, ‘Oh she’s wearing a pink jumper’.

"Whenever I see children all they want to talk about is Mr Tumble or Iggle Piggle (both well known CBeebies characters). Or, at the moment, when I see children they get very excited that I’m in Manchester."

Cerrie, along with her three-year -old daughter, Amelie, has been living in the north west for two months. The moved followed the BBC’s decision to relocate its children’s TV departments north, to Salford.

Unlike some famous talent, and some of the corporation’s executives, Cerrie has rejected the idea of commuting each week, and moved out of the south east and set up home in south Manchester. "I’ve become hardened to rain since I’ve lived here," she laughs.

Having a young child means Cerrie not only works at CBeebies but also spends a considerable amount of time watching it. "I think my daughter is bored by seeing me on telly. She has grown up with it. She’s met everybody at CBeebies. I think she believes everyone works in TV."

Cerrie says working at the channel is "as fun as it looks". "It is a diverse place. All telly should be like it. It’s important to reflect the country."

In conversation, she is reflective, eloquent and polite. The warmth, familiar from her on-screen persona, is present but her sunny disposition can’t conceal a streak of steel. Here is someone who has evidently acquired the toughness to overcome the obstacles life has thrown at her.

An example of that steel is the decision she made, aged just nine, to never wear a prosthetic arm again, having been forced to wear one during her early years.

In later life, warnings from drama tutors that she’d struggle to find roles if she didn’t disguise her arm fell on determinedly deaf ears.

Understandably, she is outspoken when it comes to the visibility of disabled people.

"There aren’t enough disabled presenters or actors. There aren’t enough disabled people in the media. People need to open their doors. It’s better than it used to be, but there is still a lot of room for improvement.

"It’s similar to 25 years ago when there were lots of black and Asian actors struggling to get work.

"Thankfully that situation has improved. Disability is the last diversity to go through that process."

So she’s backing a BBC scheme to uncover new disabled presenting talent.

PresentAble is a training programme for disabled people, designed to develop their on-screen careers.

"I think it is a positive thing," says Cerrie. "And it is necessary."

There are few disabled presenters with her profile. This scheme will seek to address that. Cerrie hopes talent can be judged on merit. But some suggest she herself has benefited from a form of quota-filling.

Does she think she got the job because the BBC wanted to demonstrate its equal opportunities credentials?

"But even if the brief had been to find a disabled person I would have been happy with that. In this industry, casting can be your way in. That’s how it works."

It’s a typically pragmatic approach from a woman determined not to be defined by her disability.

She may not see it herself, but there’s no denying Cerrie is a role model, for all of us.

Florida parents seek help from special-education advocates

2012-01-07T20:54:00.000-05:00

from the Orlando Sentinel. In the picture, Heidi Handley plays with her son Adam, who has Asperger's.

Tavious Diamond, 9, knows he's missing out on events such as Field Day and subjects such as art because he's in special-education classes at his elementary school. His mother, Jennifer, is sure he would do better in reading if he were moved into regular classes.

But she has felt so stymied trying to convince his school that she hired a special-education advocate.

"I'm furious," said the Altamonte Springs mother of three, who has hired Deltona advocate Jamison Jessup. "I thought the school system was going to do everything they could do. They failed my son."

Diamond is one of a growing number of parents in Central Florida and across the country who are paying advocates or lawyers to help them navigate the complex world of special-education services.

Federal law requires public schools to provide a "free, appropriate public education" to disabled children in the least restrictive possible setting. It also requires parents to be involved in placement decisions.

Most parents don't hire outside help. But those who do say they think the schools aren't listening to them.

"Parents are extremely frustrated," said Mark Kamleiter a St. Petersburg-based attorney who has focused on special education statewide since 1996. Kamleiter, a former special-education teacher, said he has seen the number of advocates and attorneys who focus on special education spike in recent years.

"Parents are discovering they have rights," he said.

Advocates, who are not lawyers and do not need special certification, help parents learn what choices they have in their child's education. They sit in on school meetings to develop or change the Individualized Education Program legally required for each disabled child. Some advocates also help parents file due-process claims in state court when they think the law is being violated.

Many, such as Orlando advocate Pam Lindemann started out advocating for their own children.

Lindemann and Jessup, who both advocate full time, charge $75 to $100 an hour, though they also offer a sliding scale. A lawyer can cost three times as much. Many other local advocates are volunteers or work part time, and some don't charge at all.

Exact numbers of advocates are not available, but Kamleiter said they outnumber the about two dozen Florida attorneys who focus exclusively on special-education law.

Lynda Langa, a special-education director with Orange County schools, said she has seen an increase in the number of paid advocates in the past few years, though the district also contracts with three "ambassadors" who help parents work through the special-education process.

"There can honestly be a breakdown between a school and parent," Langa said. "If they feel they are not strong enough by themselves, they have every right to bring someone in who can negotiate or speak education language."

But there can be real disagreement about what placement is best for a child. And Langa said advocates who refuse to compromise, or come in with a litigious mind-set, don't help.

Advocates say most educators want what's best for the children. But they may not know the law or think they can't offer special equipment or individualized help for financial reasons. But each advocate also has stories of hostile principals or school staff who resented their presence.

"I used to believe they're out to screw parents. That's not the case. It's the system," said Lindemann, whose daughter, now 15, has cerebral palsy. She said she wished parents didn't need the help, but "there's a huge need." Lindemann has also trained about 60 people to serve as advocates in the past three years.

One of her clients, Heidi Haines Handley, called Lindemann her "personal hero."

"If you have never been to an IEP meeting, you have no idea how intimidating that they can be, even for a very confident person," Handley said. "Everyone should have an advocate to go with them."

Handley said Lindemann helped her change her son Adam's placement, and ultimately his school. He has Asperger's syndrome, an autism-spectrum disorder.

Jessup, of Deltona, branched out into full-time advocacy after working as a paralegal for a lawyer who took special-education cases. His wife is also a special-education teacher.

He said he often sees schools refusing to evaluate a child for special-education services. Other cases involve a child's placement, the type of help a child gets or difficulties when a parent wants to use a McKay Scholarship, a state program that pays for special-education students to attend private schools.

"You often hear parents aren't as involved as they should be," Jessup said. "My parents are. Just communicate with them."

Diamond, Tavious' mother, detailed years of frustration, starting when her son got in trouble for banging his fists on the desk and hiding under it in first grade. He has a brain malformation and was placed in a class for students with emotional problems.

"It makes me feel really bad because the class is not for normal kids," said Tavious, who no longer acts out, according to his mother. His class doesn't attend art, music and media classes as often as other students, and his mother said they were excluded from Field Day.

When it took summer school to get him reading last year, his mother decided she needed to get him into more-challenging classes in fourth grade.

Diamond said she's finally making headway with Jessup's help. Tavious recently started attending reading class, lunch and classes like art with his peers. His school also agreed to do new tests of his behavior.

"He's enthusiastic about doing the work and the homework," Diamond said of the new classes. "I will definitely never go to another IEP meeting without Mr. Jessup."

California teen uses specialized prosthetic for playing the violin

2012-01-07T20:36:00.000-05:00

From the San Francisco Chronicle:

Make a list of the requirements for playing the violin, and the first few items are pretty obvious. Love of music, a good ear, dedication - check, check, check.

What about two good arms? Now that's where you want to be careful about jumping to conclusions.

Sophia Hummell confounds any glib assumptions about what is and isn't possible on the musical front. The spirited 18-year-old San Francisco native was born without a full right arm, but she's been playing the violin since the fourth grade.

She makes it look easy, too. The key is a specially designed prosthetic - what Hummell calls her "violin arm" - that attaches to the short stub of her arm with a suction device, while a mechanical grip on the other end is attached to the bow.

The result is an apparatus that has allowed Hummell to keep pace with her fiddling peers. She plays in string quartets and in the chamber orchestra of the Villa Sinfonia Foundation, a nonprofit run by violinists Lynn and Roy Oakley. With the orchestra, she's performed at the Kennedy Center in Washington, D.C., and played the national anthem for a Giants game, and just last month she was the soloist in one movement of a Vivaldi concerto at the orchestra's annual concert.

To spend any time with Hummell is to encounter a young woman who seems to simply breeze past whatever obstacles life may throw her way. Though she has a variety of prosthetic arms for different activities, she says she feels most at home without any of them - using one hand, along with the occasional teeth and toes, to negotiate the world.

She took to music as a first-grader at the San Francisco Waldorf School, where music is a required subject for all students. She began with the recorder, using a special English model playable with just one hand.

But by the fourth grade, inspired by a childhood friend, she had set her sights on the violin. So she consulted with James Caywood, an upper-extremity specialist with Hanger Prosthetics who had worked with Hummell since she was an infant.

"I told him what I wanted, and he said, 'Well, let's experiment,' " Hummell recalled. "You can't go to a store and try on a prosthetic like a shoe. Every one is custom made."

The first model was rudimentary, not much more than a long rod to attach to a violin bow. But over the years the two of them, working in conjunction with Hummell's violin teacher, Julie Smolin, have developed an increasingly sophisticated mechanism.

"I've had a number of children who wanted to play the violin," Caywood said. "And of course a lot of children start playing an instrument and then get tired and quit. But Sophia has been a wonderful kid, and she's kept with it.

"Now that she's become more of an aggressive player, we've had to specialize it just for her needs. We had to get the forearm piece to the proper length, and work on the attachment to hold the bow. It's been a long process to get to where she is right now."

Hummell also works with the San Francisco instrument maker and dealer Roland Feller to customize a range of bows for her use.

"At this point I have six bows," she said, "including a viola bow, a cello bow and a heavy violin bow. The cello bow is heavier, and it gives me more sound, so I used that for my solo. But it's harder to control. For orchestra playing I use a violin bow."

A senior at Oakland's Bayhill High School, Hummell is in the throes of the college application process. She's applying to a number of local colleges and universities ("I want to be able to come home on the weekends") and plans to study psychology so she can work counseling amputees.

Each summer she spends a week at Paddy Rossbach Youth Camp, a camp for teenage amputees from around the country.

"It's like any summer camp. We swim, canoe, play soccer and basketball - also wheelchair rugby. But we also have a mutual understanding because we're all amputees."

In many ways, the life of a one-armed violinist is like that of any other - there are scales and arpeggios to be practiced, music to memorize, dynamics and phrasing to settle on and internalize.

But there are unique aspects to it as well. The placement of the bow on the strings is harder to control, and pizzicato passages - the plucked notes that violinists execute with the bow hand - need to be done with the left hand.

On the other hand, Hummell says, she doesn't have to worry about the proper technique for holding the bow. There are screws to take care of that - which can cause problems of their own.

"Last year, right before we played at the Giants game, the bow holder got stripped and one of the metal pieces wouldn't work. I had to run all over the place trying to find a screwdriver.

"Now wherever I go, I carry all my screwdrivers with me, in case anything falls off. That's the bad thing about prosthetics - with your hand, at least you don't have to worry about parts suddenly falling off."

Quadriplegic undocumented immigrant dies In Mexico after being deported from his hospital bed in Chicago

2012-01-07T20:33:00.000-05:00

From UPI:

CHICAGO -- A young man returned to Mexico by a Chicago-area hospital after a construction injury that paralyzed him from the neck down has died, officials say.

Advocates say Quelino Ojeda Jimenez, 21, (pictured) spent months in a small hospital in Mexico that did not have the facilities to care for a quadriplegic, the Chicago Tribune reported. He was transferred to the General Hospital of Juchitan a month before he died on New Year's Day, Jeromino Ramirez Luis, the new hospital's medical director, said.

"He never even made it to his home," said Jesus Vargas, a friend in Chicago. "He was always in the hospital stuck to the machine that helped him breathe."

Ojeda, who was working illegally in the United States, was treated at Advocate Christ Medical Center in Oak Lawn, Ill., after a 20-foot fall paralyzed him. The hospital transferred him to Mexico three days before Christmas in 2010.

He told the Tribune in an interview last year that he did not want the transfer but was unable to speak as he was being wheeled to an air ambulance.

“The Movement: One Man Joins an Uprising,” which focuses on 5 disabled athletes who have regained sense of freedom through skiing, official selection of 2012 Sundance Film Festival

2012-01-05T21:19:00.000-05:00

From The Aspen Times in Colorado:

ASPEN — The 2012 Sundance Film Festival announced a documentary partially shot in Aspen as an official selection.

“The Movement: One Man Joins an Uprising,” which Kurt Miller of Boulder produced and co-directed, focuses on five disabled athletes who have regained a sense of freedom through skiing. Actor-director-producer Robert Redford and Miller's father, Warren — renowned maker of skiing films — provide the narration for the 41-minute movie, which is among 64 entries in this year's Short Film competition.

Redford is the founder and president of the annual Sundance film festival based in Park City, Utah. In all, Park City, Salt Lake City and Sundance Resort will offer five screenings of “The Movement.” The festival runs from Jan. 19 through Jan. 29.

In a trailer, Redford's distinctive voice introduces the film's theme before featuring interviews with Rick Finkelstein, a Hollywood executive paralyzed from the waist down after a skiing accident seven years ago on Aspen Mountain. The trailer is available at www.imdb.com/title/tt2054819/.

“This is the story of movement,” Redford says in the clip. “It's about finding that turning point when physical disability is no longer a limitation but a part of your character. … Like most movements, this one began with a crystallizing event.”

In the movie, Finkelstein discusses his December 2004 accident at Kleenex Corner, an intermediate trail on Ajax. Audio recordings from emergency responders describe the incident as a “skier-versus-tree” event in the movie.

Finkelstein, vice chairman and chief operating officer for Universal Pictures, considered himself a veteran skier when he flew off a precipice at high speed and crashed into some trees. He collapsed both lungs, severed his spine and suffered internal injuries. He was initially hospitalized at St. Mary's Hospital and Regional Medical Center in Grand Junction.

Six years, nine surgeries and countless rehabilitation sessions later, Kurt Miller's cameras captured Finkelstein's dramatic return to Kleenex Corner. There also was an interview at the Sundeck restaurant.

Finkelstein spent four days at Snowmass learning how to monoski with Challenge Aspen instructors Ryan Latham and Nicole Marx. Marx said Wednesday that she plans to attend one or more of the screenings at Sundance. She said Latham has more speaking parts in the movie because he shared an offbeat friendship with Finkelstein.

Finkelstein, who sold his Aspen home after the accident, told The Aspen Times a year ago that he enjoyed skiing again and working with Miller on the documentary. With the monoski, “You get the same sensation of speed,” he said.

The film premiered in Denver in November and made the rounds through a few cities in 2011. It has yet to screen locally, but Challenge Aspen plans to show it in March as part of a benefit. The venue, date and time have yet to be decided.

Miller was not available for comment Wednesday, but said in December 2010 that he planned to donate proceeds from the movie to nonprofit organizations that specialize in recreational opportunities for people with disabilities, including Challenge Aspen.

Miller said Finkelstein's accident and his ability to overcome it would be woven through the documentary.

“It's the feel-good story,” he said. “Rick had not even seen snow for six years. He never thought he'd ski again.”

The documentary features four other disabled athletes:

Chris Waddell — With more than 20 Paralympic and World Cup medals, Waddell is the most decorated male skier in U.S. Paralympic history. Paralyzed in a ski accident at age 20, Waddell was on the snow again within a year, quickly becoming a leader of his new sport of monoskiing. He is the first paraplegic to climb Mount Kilimanjaro. A U.S. Ski and Snowboard Hall of Fame inductee, Waddell has created his own charitable foundation and has worked as a TV personality and motivational speaker.

Mike May — The world-record holder for speed skiing by a completely blind person, May is a successful entrepreneur and family man. Blinded at age 3 in a chemical explosion, May has led a life of adventure, including a stint as the first blind CIA agent. He produced the first accessible GPS device for blind people. He regained partial vision through a series of transplants in 2000 and is the subject of Robert Kurson's book “Crashing Through.”

Jim Martinson — A U.S. Ski Team Paralympic gold medalist, Martinson was the first wheelchair winner of the Boston Marathon, beating all runners. At 63, he still competes successfully in wheelchair and handcycle events. Martinson served in Vietnam, where he lost most of both legs in a land-mine explosion. Upon returning to the United States, the lifelong skier discovered very little support for adaptive sports. He became a pioneer in both the technology and cultural acceptance of wheelchair sports.

Traci Taylor — Born three months premature with the rare congenital disorder sacral agenesis and a life-threatening malformation of her heart, lungs, kidneys and legs, Taylor received the most dire prognoses for several years. She not only survived but became a poster child at a March of Dimes event, where she met Warren Miller. He took her skiing, provided lessons and equipment, and featured her in his next film. She currently works with students with disabilities.

Kurt Miller self-produced “The Movement” through his nonprofit organization, Make a Hero, on a $450,000 budget.

4th annual Reelabilities: NY Disabilities Film Festival, country's largest showcase of films by and about people with disabilities, will be Feb. 9-14, 2012

2012-01-05T20:55:00.000-05:00

From ReelAbilities:

NEW YORK - More than 20 venues, across eight counties, will present the 4th Annual ReelAbilities: NY Disabilities Film Festival, from February 9th through February 14th, 2012.

Presented by various arts, culture, educational and community venues, such as the Solomon R. Guggenheim Museum, NY Public Library branches, Museum of the Moving Image, The Jacob Burns Film Center, and more, the festival will showcase narrative, documentary and short films from across the globe, many in their U.S. or NY premieres, all followed by intimate conversations and in-depth discussions with filmmakers and special guests.

In addition to the selection of ground-breaking international films; live music, dance performances, art exhibitions and other special events are major components of the ReelAbilities experience. The festival partners with over 50 community, arts, government, disability, and educational organizations making it the only film festival to bring stories of disabilities to such a wide-reaching audience. Through film, ReelAbilities brings together the community to explore, discuss, embrace, and celebrate the diversity of our shared human experience.

Festival Co-Director Isaac Zablocki says, “We use film to promote awareness and appreciation of the lives, stories and artistic expressions of people with different abilities. The films we screen not only entertain, but enlighten and capture experiences that are often shied away from.”

Initiated in NY in 2007, the festival recently launched its national presence in partnership with the Saul Schotenstein Foundation B. Premiering in Cincinnati, OH, and Atlanta, GA, earlier this year, the national festival is scheduled to be presented in Boston, MA and Greater DC area this coming February 2012, followed by additional festivals in Chicago, Philadelphia, Houston, Richmond, Fairfax, Baltimore, Columbus, and Rockville. The recently introduced new festival website, www.reelabilities.org , featurs a new homepage that allows festival goers to explore the diversity of programs offered in their communities.

The upcoming edition of the NY festival will open on Thursday, February 9th, with OCEAN HEAVEN (Xiao Lu Xue, China, 2010, 96 min, Narrative) starring Jet Li in his first dramatic role, telling the moving story of a father's tireless love for his autistic son and his attempt to teach his son the life skills necessary to surviving on his own.

The festival's closing night event will feature a screening of Academy Award Nominee Susan Seidelman's (Desperately Seeking Susan, She Devil, and more) recent dance romance MUSICAL CHAIRS (USA, 2011, 100 min, Narrative), followed by a closing night reception and dance party.

The film follows two New Yorkers, Armando from the Bronx, and Mia from the East Side, and their love of ballroom dancing. A tragic accident changes Mia's life. True to his heart, Armando dedicates himself, along with a group of colorful misfits, to help Mia deal with her challenges and dance once more.
Other films to be featured in the festival:

APHASIA
Carl McIntyre, USA, 2010, 40 min, Narrative
Actor Carl McIntyre suffered a massive stroke in 2005 and lost his ability to read, write and speak, but not his drive to act. Through humor and pathos, Aphasia speaks to anyone who has struggled to meet life's challenges.

BODY AND SOUL (DE CORPO E ALMA)
Matthieu Bron, France / Mozambique, 2011, 54 min, Documentary
The amazing story of three young Mozambicans with physical disabilities, who work to help others in their community. Their daily lives reveal how they see themselves, raising questions on self-acceptance and how to find one’s place in
society.

DEFINING BEAUTY: MS. WHEELCHAIR AMERICA
Alexis Ostrander, USA, 2011, 78 min, Documentary (pictured)
The vibrant lives of five women with disabilities on their journey to the Ms. Wheelchair America pageant, where the concept of beauty is defined through the lens of advocacy & perseverance.

GIRLFRIEND
Justin Lerner, USA, 2011, 94 min, Narrative
Evan, a young man with Down Syndrome, lives with his mother in a working-class town hit hard by the recent economic recession. When he unexpectedly comes into a large amount of money, Evan uses it to romantically pursue Candy, a girl he has loved since high school.

MABUL (The Flood)
Guy Nattiv, Israel, 2011, 100 min, Narrative
A coming-of-age drama about a family that struggles to keep up appearances while hiding their sins from one another. When the eldest son, who has autism, returns from an institution, the pressure builds and secrets begin to emerge.

MOURNING (Soog)
Morteza Farshbaf, Iran, 2011, 85 minutes, Narrative
A cinematic road trip follows a deaf couple and their young nephew on their way to Tehran. Before they get there, the couple must break the bad news to the boy that his parents were killed in an accident but the journey proves to be more complex than they had expected.

PRINCESS (Prinsessa)
Arto Halonen, Finland, 2010, 104 min, Narrative
Based on real-life events, the amazing and musical story of Anna Lappalainen who spent 50 years of her life as a patient at a psychiatric hospital, where her lovable personality healed and brought joy to those around her and where she claimed to be a princess.

REEL ENCOUNTERS 2012
A selection of award-winning films from around the globe.
I DON’T WANT TO GO BACK ALONE
Daniel Ribeiro, Brazil, 2010, 17 min, Narrative
A 15 year-old blind teenager and his best friend face issues of jealousy and other new feelings when they befriend a new kid in their class.
AGLAEE
Rudi Rosenberg, France, 2010, 20 min, Narrative
Benoit looses a schoolyard bet and must invite Aglaee, a girl with CP, to go out with him.
10:4 (TEN TO FOUR)
Guy Natanel, UK, 2010, 5 min, Documentary
Blindness through the textures, colors, and sounds of the mundane. Can the sighted fully comprehend what it means to be blind?
SOUND SHADOWS
Julie Engaas, Norway, 2008, 7min, Documentary
Enter a world where sound gives shape to space.
ANYTHING YOU CAN DO
Emma Buckley, Australia, 2009Australia, 7 min, Narrative
Two boys face off. But when the stakes are at their highest will victory be sweet?

RUN IF YOU CAN (Renn Wenn du Kannst)
Dietrich Bruggemann, Germany, 2010, 112 min, Narrative
A gripping story of friendship and a love triangle between frustrated Ben, who is bound to a wheelchair, his playful caretaker, Christian, and Annika the dreamer, musician and object of both men’s desire. When the relationships heat up, Annika cannot decide between the two men. Together they create an adventure filled with imagination and desire. But what starts out as a game soon becomes serious when Ben faces his biggest fear.

THE STRAIGHT LINE (La Ligne Droit)
Régis Wargnier, France, 2011, 98min, Narrative
The story of Yannick, a blind runner, and Leila, a recently released convict. Their relationship develops on and off the racetrack but the couple’s love is met by adversity and family relations create obstacles.

Tickets for the 4th Annual ReelAbilities: NY Disabilities Film Festival go on sale January 9th, 2012.

Full information about the festival, locations, films, special events, and guests is available at www.ReelAbilities.org.

More performances accessible to deaf people at Oregon Shakespeare Festival

2012-01-05T19:47:00.000-05:00

From WTW:

ASHLAND, Ore. — For deaf and hearing-impaired audience members and others with disabilities, the accessibility of a genuine theater experience at Oregon Shakespeare Festival is better than ever.

Since captioning its first play in 2007, OSF has continued to bolster in-theater services for its deaf and hearing-impaired audience members each season, and is discussing the potential of making further adjustments to better those services for upcoming seasons.

"We recognize that there is a need and a desire for these open-captioned and sign-interpreted performances," said OSF Media and Communications Manager Amy Richard. "It's becoming more popular as word gets out that we are doing this."

The festival has been asked to provide readable captions for performances theaterwide by the Oregon Communication Access Project, an advocacy group that focuses on making public venues more accessible to people with hearing loss.

"We've had conversations about that with them, and within the company," said Richard. "The main thing you have to consider is, how do you do that so that it's accessible and viewable by everyone, but not a distraction to those not using it?"

Richard said the theater has discussed the potential of installing a permanent caption board, also known as supertitles, to run above the stage, or installing small screens in the backs of seats. None of OSF's theaters is specifically being considered at this point in the discussions, and the project isn't at the top of OSF's list, she said.

Supertitles appear above the stage for most operas that are staged in Italian, French, German or other languages.

John F. Waldo, a spokesman and attorney for the Oregon Communication Access Project and its branch in Washington state, said purists thought the supertitles would ruin opera performances, but now captions have become the norm.

"Even so, with its current changes, the Shakespeare Festival is now by far the most accessible, for these types of plays, out of any theater in the country," he said.

Waldo, 66, suffers from partial hearing loss himself, and having experienced theater with good and bad hearing, said, "The captions are good for anyone."

"Most of us haven't been able to go to the theater for years, so it's just a delight to see this happening," he said. "And you know what most people say to me when I walk out of a performance with open captions? 'You know, my hearing is fine, but those captions kind of help.' "

The festival plans to caption 24 performances during the 2012 season and is allowing patrons to request captions for any performance, a new addition to its services, said Richard.

Because most of the festival's audience travels to fill its theaters, OSF schedules its captioned performances in weeklong clusters, so that patrons can fully immerse themselves in the festival.

"If folks are coming to town to see an open-captioned performance, and they want to see more than one, they can. As a destination theater that's something we have to do for it to be effective," said Richard.

In 2011, OSF access coordinator Jim Amberg and audience services manager Radawna Wallace captioned 39 performances at the festival, and distributed about 10,000 assistive listening devices for patrons with moderate hearing loss. Additionally, the pair arranged for nine plays to be sign-interpreted, and audio-described about 100 performances for blind and visually impaired patrons.

Although some of the captioned performances weren't attended by any patrons with hearing loss, as many as 14 sat in front of the portable caption board for at least one play, said Richard.

For performances, the festival uses a portable LED board that flashes red captions from a perch below the left of the stage. A section in front of the board is reserved for the deaf or hearing-impaired.

Before a performance can be put into captions at OSF, scripts have to be stripped of stage directions and everything else that is extraneous to what an audience should read in the captions during a play.

Then a computer program breaks scripts into 26-character lines, but it's not able to divide phrases and punctuation in a way that would be logical for readers. For example, it might separate a period from the sentence to which it belongs.

Both Amberg and Wallace were selected to receive a 2011 John F. Kennedy Center for the Performing Arts Leadership Exchange in Arts and Disability Award for Emerging Leaders. They could not be reached for this article.

"Right now we're trying to provide as much as we can for our audiences with the limitations that we have," said Richard.

National Federation of the Blind files complaint against Baltimore City Public Schools for proposed use of Nooks

2012-01-05T18:59:00.000-05:00

From the NFB:

BALTIMORE -- The National Federation of the Blind (NFB), the nation's leading advocate for access to technology by the blind, announced today that it has filed a complaint with the United States Department of Justice, Civil Rights Division, requesting an investigation of the Baltimore City Public Schools' proposed acquisition of NOOK devices.

The NFB filed the complaint because the Baltimore City Public Schools recently announced a partnership with the Harry and Jeanette Weinberg Foundation to overhaul the school libraries in six middle schools in the district. As part of the partnership's plan, the selected school libraries will acquire an unspecified number of NOOK e-reader devices. These devices are inaccessible to blind and other print-disabled students.

The NFB raised its concern with leaders in the Baltimore City Public Schools but has been told that the district is moving forward with its plans to implement these devices while it seeks "alternative emerging technology"-- in other words, a needlessly segregated technology for students with print disabilities. Because the NOOK is inaccessible to blind students, the Baltimore schools' use of the devices violates Title II of the Americans with Disabilities Act (ADA).

Dr. Marc Maurer, President of the National Federation of the Blind, said: "The National Federation of the Blind will not tolerate blind students receiving an unequal education. If e-reading devices are available in school libraries, they must be accessible to all students, not just the sighted.

"Appropriately, the date of this complaint falls on the birthday of Louis Braille, who first brought literacy to the blind and fought for the right of blind students to read independently. He would not stand for this glaring inequity and neither will we. That is why we have asked the United States Department of Justice to act swiftly and decisively to ensure that blind students receive the same education as their sighted peers."

The National Federation of the Blind is represented in this matter by Daniel F. Goldstein and Daniel A. Ross of the Baltimore firm Brown, Goldstein & Levy, LLP.

Blind Briton sets South Pole trek record

2012-01-05T18:14:00.000-05:00

From The Mirror in the UK:

A British adventurer has become the first blind person to trek to the South Pole.

During his 39-day expedition, Alan Lock (pictured), 31, suffered howling winds, temperatures of -35C and whiteout blizzards.

The amateur explorer completed the 600-mile journey to raise money for the Sightsavers charity.

Speaking from the South Pole, Mr Lock said: "It feels amazing to have made it to the South Pole, what an adventure.

"The high point is having the opportunity to make this expedition in the first place. Reaching the pole, having been only one of a handful of people to have ever walked here, is a fantastic experience.

"There have been difficulties with the terrain but this has all been made possible for me by my great team members.

The trip, which started on November 22, has raised £15,000 so far for the Sightsavers charity, which aids blind people in the developing world, and San Francisco-based Guide Dogs for the Blind.

Mr Lock, from Clevedon, Somerset, undertook the Polar Vision trek accompanied by two sighted team mates Andrew Jensen and Richard Smith, whom he met while studying for an MBA in the United States, plus guide Hannah McKean.

Having been forced to halt his naval career after losing all but his peripheral vision, Mr Lock now works in telecommunications.

But since losing his sight, he has completed 10 marathons, including the 151 mile Marathon Des Sables in the Sahara Desert. He has been to a number of mountain summits including the highest mountain in Europe, Mt Elbrus, and in 2008 Alan set a Guinness World Record when he became the first visually impaired person to row across the Atlantic Ocean.

The Polar Vision team underwent intensive training that included a camp in Iqaluit, Canada, where they spent a week traversing the ice pack near the Arctic Circle on skis, and dragging tyres attached to their waists along beaches and parks back home to develop the muscles needed to pull the sleds.

"Trekking for over nine hours each day we have been losing up to 9,000 calories a day," Mr Lock said.

"We've also suffered many falls and bruises whilst trekking across the rough terrain as there are many big drops and jumps which I've relied on my teammates to guide me through."

Caroline Harper, the chief executive of Sightsavers, added: "Sightsavers is incredibly grateful and honoured that Alan has chosen to support our work to eliminate avoidable blindness in the developing world.

"By taking on such a colossal challenge and raising money for Sightsavers' work, they will help to transform the sight and lives of some of the world's poorest people."

Federal judge removes class-action status from a lawsuit that had argued Florida illegally forces people with disabilities into nursing homes when they are capable of living elsewhere

2012-01-05T00:07:00.000-05:00

from The AP:

WEST PALM BEACH, Fla. - A federal judge struck a blow Tuesday to advocates for the elderly and disabled, removing class-action status from a lawsuit that had argued Florida illegally forces people into nursing homes when they are capable of living elsewhere.

U.S. District Judge Robert Hinkle ruled in favor of one of the institutionalized Medicaid patients who sued the state of Florida in 2008, saying they should be allowed to live in other settings. But by removing the suit's class status, the ruling applies to just one person, Clayton Griffin, instead of the 8,500 plaintiffs estimated by attorneys to be in a similar situation.

"It is a limited victory," said David Bruns, a spokesman for AARP, the nonprofit group for those 50 and over which took up the case up on the behalf of the plaintiffs. Southern Legal Counsel also joined AARP in that action.

Filed just shy of four years ago and argued in court early last year, the lawsuit has dragged on so long that of the original seven plaintiffs, five have died. A sixth, according to the judge's written decision, said he no longer wished to leave a nursing home after relatives moved away.

Because of that, Hinkle vacated the class action he previously had granted, also citing changes to the state Medicaid program have ensured people can avoid nursing homes if they wish.

"Not a single Medicaid beneficiary who is in a nursing home," wishes to be released, and could safely do so, "would not be approved for transition" under the current state system, Hinkle wrote.

But in the very same judgment, Hinkle acknowledges "the state apparently has made errors ... in failing to transition a small number of nursing home residents."

Among those mentioned by name is Marguerite Pace, a Sarasota woman who was deposed in the case and had been among the plaintiffs until she was granted a waiver by the state to receive support services outside a nursing home.

That waiver was granted last spring. She still remains institutionalized, waiting on a seemingly unending amount of bureaucratic hurdles.

Pace has no use of her legs and limited use of her arms. She is still hopeful she will be released by the time her 50th birthday comes on Jan. 14, but she called Tuesday's decision disheartening.

"I'm sad. Again it's saying that people with disabilities have no rights, that we are at the mercy of the state," she said.

Americans who qualify for Medicaid and get sick or disabled enough to require substantial care typically have little problem gaining admission to a nursing home. But obtaining Medicaid-supported services at home, such as visits from an aide, is substantially harder and often involves a long waiting list, even though it may cost the government less.

Advocates for the elderly and disabled had hoped a 1999 Supreme Court case would change that. The Olmstead decision, as it is known, involved two Georgia women, both Medicaid beneficiaries with mental retardation who wanted community-based services, but were refused and were treated in institutions.

The high court ruled unjustified isolation of the disabled in institutions amounted to discrimination under the Americans with Disabilities Act. It said states must provide community services if patients want them, if they can be accommodated and if it's appropriate. Medicaid is the state-federal partnership that provides health coverage and nursing home care to the poor.The plaintiffs in the Florida case had sued citing the ADA.

The case was put on hold for a year beginning in 2009, when the defendant, the Florida Agency for Health Care Administration, agreed to spend $27 million toward nursing home diversion programs.

When that ultimately failed to satisfy the plaintiffs, the case went to trial.

A spokeswoman for the Agency for Health Care Administration, said Tuesday night she could not immediately comment.

Inclusion Films opens doors in Hollywood for people with disabilities

2012-01-03T17:34:00.000-05:00

from The LA Times:

Greg Donoghue grew up around film sets. His father worked as a film publicist in Europe and his uncle is Pierre Spengler, a producer of the "Superman" movies.

But the 30-year-old had never seriously considered a career in the movie industry until he got a chance to direct his own short-film called "Sunshine Manor," a love story about relationship between a nursing home patient and her doctor.

"It takes a lot of patience, and time is your worst enemy," Donoghue said of his directorial debut. "I'd rather build sets than be a director, but the experience is going to benefit me when I try to get an interview."

Donoghue, who was diagnosed a few years ago with a form of high-functioning autism, was among nearly two dozen special-needs crew members who worked on "Sunshine Manor." The film was shot over three days in Burbank this summer as a class project for a 20-week-long course offered by Inclusion Films.

Founded by Joey Travolta, older brother of actor John Travolta, Inclusion Films trains adults with developmental disabilities in the nuts and bolts of filmmaking -- from writing the script to building sets and using film and editing equipment -- with the goal of finding them jobs in the entertainment industry or some other field.

Students with autism, cerebral palsy and Down syndrome are trained by working cinematographers, set designers, actors and other professionals who are active in the industry.

"The filmmaking process is a great teaching tool about life," said Travolta, 61. "A lot of our students aren't going to be filmmakers and may never work in the film business, but they are going to be able to go into the workplace and have a sense of what it's like to be on the job. This builds their self-confidence."

Based in Burbank, Inclusion Films works with Easter Seals of Southern California to provide jobs to graduates of the program and is in discussions with various studios to set up internship programs for the students, Travolta said. Many of the participants are referred by the nonprofit regional centers that contract with the California Department of Developmental Services to provide job training and other services for special-needs people.

"We've seen phenomenal things happen with the students in this program," said Mike Clark, executive director of the Kern Regional Center, which in the last three years has referred about 70 students to Inclusion Films' program in Bakersfield. "They see themselves as people who can do something with their lives."

Diane Anand, executive director of the Frank D. Lanterman Regional Center in Los Angeles, acknowledged the difficulty of finding work in the movie industry for special needs adults, but said the film workshops instilled confidence that helps graduates find jobs or pursue further education.

"This really resonates with our clients," she said. "They're learning how to interact in a real-world work environment and how to interact with their peers."

Travolta launched the Burbank business in 2006 after a long career as a singer, actor, director and producer. The Englewood, N.J., native briefly worked as a special education teacher in New York before embarking on a singing career in 1978, performing on such variety shows such as "American Bandstand" and "Donny & Marie," the show starring the two Osmonds.

Travolta went on to act in movies such as "Beverly Hills Cop III" and "Oscar" before shifting his attention to writing and directing his own movies, including "Enemies of Laughter" starring Peter Falk and the comedy "Partners."

The idea for Inclusion Films happened almost by accident. Travolta was helping his daughter organize a film festival at her West Hills high school.

After reading a newspaper article about his involvement in the school film festival and his acting workshops for children, the mother of an autistic teenage boy named Taylor Cross asked if he could help her son make a film about being autistic. Travolta mentored the boy and together they made the 2006 documentary, "Normal People Scare Me."

After his experiences working on the documentary, Travolta began to teach film to other autistic children at camps.

"I found my calling," he said. "This allowed me to merge two things that I really love: filmmaking and working with special-needs children and adults."

With the help of professional instructors, many of whom had worked with Travolta on his earlier films, students take classes in script writing, prop building, editing and cinematography, then apply what they learn by making an actual short film. One 2009 film called "Spud," about a 12-year-old victim of neighborhood bullies who reinvents himself as a superhero, was written and directed by Tyler Norman, a student with Asperger's syndrome.

Using his Hollywood connections, Travolta also brings in high profile speakers, including "Rain Man" writer Ron Bass and "Criminal Minds" star Joe Mantegna, to meet the students.

With the support of Inclusion Films, former student Michael Cooney of Boston launched his own production company, Team Diversity Media, which produces commercials and music videos with students from Inclusion. The company produced a promotional video for Easter Seals and the Chicago School of Professional Psychology.

After receiving a bachelor's degree from the University of Massachusetts in Amherst, Cooney worked at a radio station but had trouble finding permanent work because of his condition, cerebral palsy. He credits the workshops at Inclusion Films with giving him the confidence and the contacts to start his own business.

"I used to think that disability was something to hide," said Cooney, who also teaches at the school. "I learned that having a disability is a gift and that I have abilities I didn't even know I had before I came here."

Deaf actress Marlee Matlin on why ‘Switched at Birth’ is breakthrough TV

2012-01-03T12:01:00.000-05:00

From The Wall Street Journal. (Switched at Birth will return Jan. 3.)

Oscar-winning actress Marlee Matlin is back in the spotlight on ABC Family’s “Switched at Birth,” which will have its winter premiere on Tuesday.

The hour-long drama, about two teenage girls who discover they were accidentally switched at birth, finds Matlin, who is deaf, in good company with a new crop of young and talented deaf actors. Katie Leclerc plays Daphne, one of the teens, who is deaf. Leclerc, who is hard of hearing, can speak and is fluent in American Sign Language. Sean Berdy, a deaf actor, plays Emmett, Daphne’s best friend. Matlin, in a recurring role, plays Emmett’s mom. The show’s other major characters learned sign language, which figures prominently in the story lines.

The show made ABC Family’s No. 1 series debut of all time in June 2011 with over three million in total viewers, according to the network. Matlin, who at age 21 became the youngest actress to win an Oscar for Best Actress when she made her film debut “In “Children of a Lesser God,” isn’t surprised by the show’s popularity. “It adds a great deal of dimension to the public’s perception of what deaf people are like,” says the 46-year-old Matlin. “Because you really understand that there’s more than just a deaf person who happens to move their hands…. there’s a language, there’s a culture, there’s relationships between deaf people, deaf people and hearing people, there are obstacles, there is happiness and joy, and people are watching this all flow into their living rooms.”

How did you get involved in “Switched at Birth”?

My agents had told me that the producers wanted me to see the pilot. They were very thorough. They wanted to see if they got it “right” with the pilot and seeing as I was experienced in playing deaf characters and with story lines involving deaf characters, I, along with my producing partner, Jack Jason, went to see it. I was very impressed with how they wove the elements of the deaf community into the pilot so well, how they were able to subtitle scenes that had sign language. I had tried many times in the past to get deaf characters on screen without having translated/spoken dialogue with no luck, so I was very impressed they were able to do it. By the end of that first meeting, I told them “If you’ll have me, I’d love to be part of the show!”

“Switched” is one of the first TV shows to have deaf and hard-of-hearing actors in lead roles. Why do you think it has taken this long for a show like this to happen?

It’s not exactly true that “Switched at Birth” is the first to have deaf and hard of hearing actors in the lead. I did my first series lead back in 1991 on a show called “Reasonable Doubts” and have done many shows with other actors who are deaf. But “Switched at Birth” is the first TV show where there is more than one actor who is deaf or hard of hearing and who are series regulars. And the show is the first I can recall that allows them to communicate in their language–American Sign Language– much as it’s been done on other shows like “Lost” or “Heroes” where actors who speak in a foreign language are subtitled. I think those shows and the large number of reality shows with subtitling [when it's difficult to hear people on screen] have made the landscape more welcoming to subtitles. I think it’s way overdue and very welcome. It allows deaf actors to stand on equal footing with their hearing peers.

Why do you think studio executives green-lighted the show? Is it a question of them finally being comfortable with it — or thinking viewers would be comfortable with it?

I think it’s just a matter of expanding notions of diversity. There have been so many shows done so many different ways but were basically reinventions of the same wheel. I have tried for a number of years to encourage expanding ideas of what a show could benefit from by having a deaf character, simply because it’s just different and interesting. The producers clearly had the clout to suggest the idea, they made it happen and they did it well. I’ve always said, you can write for any character, any type of character in a teleplay as long as it’s written well, people will watch. That’s what the producers of “Switched at Birth” did; they wrote it well and they did it seamlessly. It’s a simple formula–a teen drama–just done from an entirely new and fresh perspective! And look, people don’t have to always hear characters talk. Look at the new feature film “The Artist” –it’s done entirely without dialogue and is a hit; it might even win the Academy Award for Best Picture. At the end of the day it’s about stories—good stories. Written well and you can show anything!

In one scene, your character questions the wisdom of your TV deaf son, Emmett, becoming involved with a non-deaf girl. Your husband and your four children are all hearing. Would you have similar reservations for your own children?

No, as we all know it’s a TV drama and an exaggerated version of what goes on in real life. In my case, I wouldn’t mind whom my children married as long as they were happy. But the statistics my character quoted are true; the divorce rate between deaf and hearing couples is high. And there are many deaf people who couldn’t imagine living in a marriage without someone who doesn’t speak their language. For me, I believe that hearing or deaf is fine as long as both parties are willing to communicate in each other’s language. But if there’s no communication, then the marriage, I believe, will be difficult if not doomed.

Despite all the technological advances that now make it much easier for deaf people to communicate–via email and text and Twitter and Facebook and video–is there still a feeling of isolation among the deaf?

Oh absolutely. I’m the only one in my family who is deaf and there are still conversations that go around me that I miss out on. And I ask what’s going on and I have to ask to be included. But I’m not going to be sad about it. I don’t live in sad isolation. It’s just a situation I’m used to. I don’t like to be left out in conversations. And yet, the truth is, if I’m with a bunch of deaf friends who are signing I feel 100% at home because everybody’s speaking the same language.

What other projects do you have, on top of your recurring role in “Switched”?

I am currently producing an app for Apple platforms called “Marlee Signs” that teaches sign language. Since “Switched at Birth,” so many young people and adults have asked me to teach them a few signs so I thought, why not do an app? I’m also producing a number of projects, some already in script stage some in development. And my plate is full with motivational appearances, speaking on topics such as diversity in the work place, importance of philanthropy, advocating for children with disabilities as well as working on behalf of my charities. I’m particularly proud of my work with the Starkey Hearing Foundation for whom I raised a million dollars in one day on “Celebrity Apprentice.” They do great work around the world helping deaf children in developing countries get proper attention and free hearing aids. And I’m still working on making sure broadband and Internet content is closed captioned [just as she did with broadcast TV] as well as work on behalf of advocating for expanded Text to 911 capabilities for millions of people who are unable to call into 911.

Advocates for people with disabilities speak out on Detroit transit cuts

2012-01-01T19:42:00.000-05:00

From The World Socialist Web Site, which recently interviewed members of Warriors on Wheels concerning cuts in bus service in Detroit and surrounding suburban areas.

Warriors on Wheels is a Detroit-based organization that advocates for people with disabilities.

In 2004 Lawrence Dilworth and four other persons with disabilities initiated a class action lawsuit under the Americans with Disabilities Act (ADA) against the Detroit Department of Transportation (DDOT) over lack of wheelchair access on city buses. Since that time bus service in the Detroit area has drastically worsened for both individuals with disabilities and able-bodied people alike.

Transit users in Detroit face long waits due to the lack of serviceable buses, while SMART (the suburban Detroit transit system) recently instituted drastic cuts including the elimination of 15 weekday routes, several weekend routes as well as cuts in service during “off peak” hours.

WSWS: Can you tell us about Warriors on Wheels?

Lisa Franklin: I am the founder of the organization. In 1996 I was in an auto accident caused by a drunk driver. I was ejected from the vehicle. I woke up one week after and I had a spinal cord injury. I was classified as a paraplegic. I can stand on a walker, but I use a wheelchair for mobility. After 12 years going through the community and seeing the lack of accessibility and insensitivity I encountered, I realized something had to be done.

Our organization is mostly for persons with physical challenges, but our members have various disabilities. We ensure the city is ADA compliant and, in particular, supplying people with adequate/mandated transportation services. Education is key to change in our community. We talk with the schools and First Responders, and promote awareness. We have been very successful in our approach, which emphasizes communication and other solutions to prevent costly litigation.

We take pride in our independence, which is why these cuts hurt us in a grave way. Most of us don’t have the luxury of driving. We have to depend on public transportation and they are not delivering. The cuts in transportation limit our independence.

Sixteen percent of Detroiters have disabilities, and 70 percent of our homeless population. The underserved in our city continue to be the subject of constraints. It’s awful.

WSWS: What has been the impact of the cuts in bus service?

Marguerite Maddox: These cuts are really affecting my ability to get around, because I have depended on public transportation from day one. My grandmother taught me to use public transport at a very young age. By the age of 12, I was learning how to get buses so I could prepare myself to be able to work. I use SMART and DDOT to travel from city to suburbs. Since there are no major grocery stores in Detroit, I have to use the buses to get groceries in the suburbs, so having the bus stop at the city limits is a real hardship.

I used to take my dog, Jello, to Farmington. That is the only vet in this area who will treat the PAWS assistance dogs for free. The buses I took, the 305 and the 385, are cut out now.

Lisa Franklin: Employers are paying attention to this. They won’t even hire people from Detroit because you can’t make it to work. It is a bad situation. My daughter is a college student and she has problems getting to school on time. She has to leave two, two and a half, three hours early to get to school on time.

What I found out recently with the SMART cutbacks is that Smart Connector has also conformed to only running on peak hours, so they are only transporting people with disabilities during peak hours if they are coming to the city of Detroit. If you have a person sitting in a wheelchair at a bus stop, they have to wait even longer for a bus, because with the cutbacks buses are overcrowded and there is no room to board a wheelchair.

Lawrence Dilworth: It is worse than it’s ever been. When Detroit catches a cold, people with disabilities catch pneumonia and wind up in intensive care.

Lisa Franklin: There have been people left waiting at the bus stop. One of our members was going down Eight Mile Road and he saw a gentleman waiting for the bus. He came back an hour and a half later, and the guy was still sitting there. So he pulled over to see what the problem was. He said, “One bus passed me by and the lift wasn’t working.” We’ve had that issue since 2004 when the lawsuit came into play. They were supposed to fix that issue. The buses aren’t supposed to leave the yard if the lifts aren’t working.

We feel if the transit system is better for us, it will be better for everybody.

Lawrence Dilworth: It is worse than when we initiated the lawsuit. Look at the news, you have 400 buses and only 100 are working. That has got to stop.

The main problem we had was with what we call rear loaders. The newer buses and all the SMART buses are front loaders. But the DDOT buses still have a lot of the rear loaders. I refuse to ride on those. I will let a rear loader go by and wait for a front loader because if there is a fire in the back, you just can't get out.

Once I was on one of those old buses. The bus broke down. They did not even have one of those hand cranks to get me out of there. Now suppose the hand crank is missing in the buses on fire? How do I get out of there?

WSWS: Are you a locally based organization?

Lisa Franklin: Yes, we started right here. We actually started in 2006 as Women on Wheels and we changed it to Warriors on Wheels in 2008. It started because of the lack of accessibility around the community. It was across the board wherever we went. This is the first chapter.

WSWS What has the response been?

Lisa Franklin: Everybody talks. The ball is starting to roll. My husband used to be a truck driver and he met a couple in Tennessee with cerebral palsy, and they were interested in starting a chapter there.

Lawrence Dilworth: Lisa is an inspiration for everybody in Detroit who is physically challenged, or even seniors. I got involved because I saw what she was doing. She is the biggest advocate for people with disabilities in the city, bar none.

WSWS: What does the Americans with Disabilities Act require?

Lisa Franklin: The ADA sets out the conditional and unconditional. If you can ride the line-haul buses, but maybe it’s too cold outside, then you can use the para transit line. [Para transit buses pick up those too disabled to use regular service. They are confined to the general area served by regular buses.] Unconditional means you can’t use the line-haul, you have to have para transit. But DDOT doesn’t go by that rule and neither does SMART. If you can ride the line-haul, flat out you are not qualified to ride the para transit line.

Lisa Franklin: The ADA says there are two types of situations that would allow someone to use the para transit buses, conditional and unconditional. For example, heavy snowfall may affect the ability of a wheelchair to get to a bus stop. If it is too hot or too cold outside, then some people start to qualify for the para transit buses. But DDOT does not go by the rules and neither does SMART.

WSWS: So they don’t transport disabled people in the winter.

Lisa Franklin: Right, so people with disabilities are stuck.

Marguerite Maddox: They don’t train the drivers on the different kinds of service.

Lisa Franklin: They are supposed to include a person with disabilities when they train the drivers. And they stopped doing that about two years ago.

Lawrence Dilworth: The training is terrible.

Marguerite: Many of my friends have been denied access to the para transit buses. They denied them for the different kinds of services. Those who are blind, have epilepsy, use a wheelchair, have PTSD, or other health problems find getting certified to use the para transit service is difficult.

New federal study criticizes DOJ for failing to enforce laws that provide disabled students with SAT, bar exam accommodations

2011-12-29T20:48:00.000-05:00

From USA Today:

A new federal study criticizes the Justice Department for failing to enforce laws that provide disabled students with special accommodations for taking the SAT, bar exam and other high-stakes tests.

Testing companies say they don't have to provide accommodations if they think the requests are unreasonable or if they think the applicant hasn't proved they need the accommodation.

People with disabilities such as visual impairment, dyslexia or attention-deficit hyperactivity disorder say they are entitled to extra time, special software or other accommodations that will best ensure that the test reflects their aptitude rather than their disability.

Testing companies say they don't have to provide accommodations if they think the requests are unreasonable, or if they think the applicant hasn't proved they need the accommodation.

The Government Accountability Office (GAO) found that "almost all" of the nine testing companies it studied did not change any practices in response to regulations issued this spring designed to broaden the definition of disability and reduce burdensome documentation. It also found that the Justice Department's hasn't updated training manuals for the law since 1993, nor has it initiated compliance reviews to ensure testing companies meet the standards.

"The testing companies don't want to comply with the law … (and the) Department of Justice hasn't been enforcing the law," said Rep. Pete Stark, D-Calif., one of three House lawmakers to request the GAO study. They are urging Attorney General Eric Holder to conduct periodic compliance reviews of testing companies in addition to strengthening the Justice Department's review of citizen complaints.

The report is the latest wrinkle in a long-festering battle between disability-rights groups and testing companies. Private testing companies say they must guard against applicants who may seek an unfair advantage by requesting accommodations they don't need, and that the use of software increases the potential for security breaches.

"There are many interests at stake. Testing organizations have a legitimate interest in protecting the integrity of the test. … The kids who take the exam who aren't disabled have a right to compete with everyone else on a level playing field," said Washington lawyer Bob Burgoyne, who represents the National Conference of Bar Examiners, which has been the target of several recent lawsuits.

A Maryland judge last year ruled in favor of the bar examiners, but courts this year in California, the District of Columbia and Vermont have sided with visually impaired people who were denied the use of software they requested but allowed to have someone read test questions to them. Disability-rights advocates say inflexible company policies often force them to delay careers.

"Only because I sued was I able to take the test when I wanted to," said Deanna Jones, 45, of Middlesex, Vt., who passed a standardized test required to practice law after a judge ruled she could have access to computer software — the same software she has used throughout law school — to accommodate a visual impairment and learning disability.

Virginia father creates app to navigate autism

2011-12-28T21:29:00.000-05:00

From The Virginian-Pilot:

Joe Hill watched his son press a finger against the screen of an iPhone, pull back an animated slingshot, and fire a bird through the virtual air.

He was amazed at how quickly Deacon, 3 at the time, mastered the game Angry Birds. A year earlier, Deacon had been diagnosed with autism, a developmental disorder that impairs the ability to socialize and communicate.

As Hill watched Deacon play the popular game, an idea bubbled in his mind for a computer application to help children with autism learn to communicate. Hill's startup company launched Aeir Talk for the Apple iPad tablet on Nov. 30.

"I just really wanted something that was affordable and was also quality work," he said. "There were a lot of apps that did a lot of different things, but I really wanted a one-stop shop for people who had kids with autism."

The application essentially allows children to create simple sentences by selecting from a row of virtual flashcards that represent nouns and verbs.

What makes the app unique, Hill said, is that it allows parents to customize the flashcards, uploading their own photos, typing in their own text and recording their own voices. That allows the flashcards to be personalized for the child.

"The familiarity of things around them really helps in the learning," Hill said.

So far, the $40 app has been downloaded more than 100 times, and Hill's website has received thousands of hits.

And Aeir Talk is a hit with Deacon, 4, and Hill's younger son, Gunnar, 3, who also has been diagnosed with autism. Since they've been using the app, Hill said, his sons are getting better at recognizing facial expressions, and Deacon can now call his brother and grandparents by name.

Until that moment when Deacon played Angry Birds, Hill had struggled to interact with his son and find something to hold the boy's interest. As he played the game for the first time, Deacon giggled and kicked his feet with excitement as the birds squawked and flew across the iPhone's screen, Hill recalled.

"It actually brought me to tears," said Hill, who lives in Chesapeake. "That day was the first time we had actually sat down together and interacted for a long time."

Deacon would play the game for hours or until the phone's battery died. After a day or two, Hill's son even learned how to tell his parents he wanted to play.

"He was saying, 'birds, birds,' and asking for it by name, which is a big deal because he doesn't say much," Hill said. "I hadn't seen him interact with toys like that at all. So I knew there was hope. I knew there's something in his mind that could be unlocked."

The wheels began to turn in Hill's head, too. He began searching the Web for smartphone or tablet computer programs designed for autism. The ones he found were expensive and lacked the features he wanted.

So Hill toyed with the idea of trying to develop an app himself.

Around last December, Hill bounced the idea off two doctors at Children's Hospital of The King's Daughters in Norfolk. The doctors, who had treated Deacon and Gunnar, were enthused.

"Language is one thing that makes a huge difference with autistic children," said Dr. John Harrington, one of the pediatricians with whom Hill met. "Most kids, if they're speaking by age 5, often have a better outcome than if they're not."

Early this year, Hill searched for investors to fund the app's development. He also visited parents who were raising autistic children to determine what features they wanted.

By February, he had found investors, and Hill quit his job selling insurance to focus on developing the application. He approached We Are Titans, a Norfolk-based Web and mobile software development company, to build the program.

But his funding fell through the next month. Facing grocery bills and a mortgage payment, Hill told the developers at We Are Titans to put plans for the app on hold, and he took a job scrubbing toilets at a Chesapeake hotel.

Rather than let the project stall, We Are Titans offered to go ahead and develop the program.

"The type of company that we have, people call us every day with ideas - they have something they call the next Facebook, or something revolutionary," said Zack Miller, a project director at the company. "But not every day do we hear something like this."

Miller's company formed a partnership with Hill, and the company began work on Aeir Talk in May.

Since the app launched, Hill said he's hearing good things, including from Harrington at CHKD.

"Kids with autism can process things fairly well if it's visual and it makes sense to them," Harrington said. Hill "has set it up to take pictures of their natural environment and set up sentence structure so they can communicate."

Children with autism like repetition, Harrington said.

"It allows them to use it over and over again but make changes quickly," he said of the app. "And that's the benefit it of it. It puts educational stuff on its ear."

One early user of the application is Chesapeake resident Donna Hillard. Her son Willy, 14, has been diagnosed with autism.

"When I heard about this device, I knew that he wouldn't outgrow it, because you can make it harder and harder," said Hillard, 60. "So first of all, we put my voice on it. He immediately loved the idea that my voice was on it, and I was asking him questions, and he was pointing to the answers."

Hillard said that in the short time her son has been using the program, he's already improving his communication skills.

Hill wants to share that experience with as many parents and autistic children as possible.

He and We Are Titans are getting feedback from early adopters and plan to continue to improve the application. They also want to launch it on other platforms. Recently, they temporarily dropped the price of the app to $10 to encourage more downloads.

Most of all, though, he wants Aeir Talk to foster his relationship with his sons.

"I hope that my sons will be able to follow directions," he said, "or that they'll be able to look at me and say 'I love you,' and grasp 'I love you.' "

American families saving children with Down syndrome abandoned in Ukranian mental health institutions

2011-12-28T21:27:00.000-05:00

From The Daily Mail in the UK:

Her beaming smile and the giant hug from her new sister is a world away from the lonely, uncertain life little Mia had been destined to face.

At just four years old, she was due to be transferred from her orphanage in the Ukrainian city of Donetsk to an adult mental health institution simply because she has Down syndrome.

There, she would have no hope of a family or an education - only the prospect of growing up in an environment of neglect.

But she now has a new, loving home, complete with adoring parents and siblings after her picture was spotted on the internet by American couple Kris and Kecia Cox.

'Her eyes were really what spoke to us first,' Mrs Cox told ABC World News. 'They just grabbed us, and we just knew that she was saying: "You're my mom and you're my dad, and you're supposed to come get me."

Her photograph was posted on the website for Reece's Rainbow, a nonprofit organisation that helps match disabled children - most of them with Down syndrome in eastern Europe - with families in the United States.

In the Ukraine, where society praises appearances, children with the condition are often abandoned at birth. Placing them in grotty institutions alongside adults with severe mental illness is quite common.

Mia (pictured), as she has been renamed by the Coxs, was born Kareen in Donetsk on Jaunary 15, 2007, but when she diagnosed with Down syndrome, her parents terminated their parental rights.

Just a month after Kareen was born, Mrs Cox received the same heartbreaking news Kareen's birth mother was told - her third daughter named Bree also had the condition. Kecia and Kris were devastated.

But their experience made them determined to bring some love into the life of someone in their daughter's position who was far less fortunate. So they started trawling Reece's Rainbow.

'We would come home at night and, you know, get up, get on our laptop and sit in bed and look through all these pictures of the babies and nothing stood out,' Mrs Cox said.

And then one day, when Kris was at work and Kecia was on the computer at home, she clicked on Kareen's picture. It was one she had seen before, but this time something pulled at her.

'When I came in and we sat down and started talking, she, I mean she just burst into tears,' Kris said. 'Basically just said: "I think I found our daughter."'

From then on, it was a family effort to raise money through yard sales and fundraisers to pay for the $30,000 adoption.

'I think we found our daughter': The couple spotted Mia through Reece's Rainbow, a non-profit organisation that helps match disabled children in eastern Europe with families in the United States

'I think we found our daughter': The couple spotted Mia through Reece's Rainbow, a non-profit organisation that helps match disabled children in eastern Europe with families in the United States

The girls - Kyra, nine, Adrie, six, and Bree - made bookmarks and manned lemonade stands. And perhaps the biggest sacrifice for three children, they dumped out their jar of coins they'd been saving for a family trip to Disneyland.

Kecia and Kris then embarked on a month-long trip to the Ukraine to complete the complex process of adopting.

When the couple walked into the orphanage for the first time, they were ushered into a large room with toys on a table and a large mural on the wall.

And then Kareen was brought in, carried by a nurse, her shortly hair carefully styled with tiny white rosettes.

'Priviet,' Kecia said to the little girl – 'Hello' in Russian. She reached out to touch her daughter for the first time.

When asked if they wanted to adopt her, they signed the papers on the spot.
Big hug: Mia welcomes Mr Cox as he arrives at the orphanage to start the adoption process

They returned to the orphanage the next day to start a routine that would last them the next 3½ weeks, taking Kareen to a small playground on a lot of unmowed grass outside the orphanage.

'She smiled a little when we first met her,' Kecia said. 'But after only a couple of days she had a sparkle in her eyes that she did not have before.'

As Kris carried her around the playground - she was a Daddy's girl from the very start - Kecia touched Kris' chest and told Kareen: 'Papa'

At the end of the 32-day stay, Kris and Kecia walked with her through the orphanage gates for the final time. Mia stopped to look behind her, but never looked back again.

In the weeks that followed, Mia changed a little bit more every day. Her pale skin became rosy from spending time in the summer sun, ABC News reported.

Doctors say her weak legs are much stronger and she will eventually walk normally. Her hair grew in thicker and she gained weight, benefiting from a new diet that included fruits, vegetables and protein.

She began learning sign language and now signs words like 'shoes'. She says 'bye-bye' and 'Papa' or 'Daddy' and knows what it means to 'give loves'.

Her sisters have taught her how to play on the swingset, how to terrorize the backyard in a motorized Barbie jeep, how to put on dance parties in the playroom.

'We haven't even touched on her capabilities. She has so much to give and that the world gets to see that now,' Kecia said. 'She doesn't have to be in a little white room hidden away because of an extra chromosome.'

Needs of amputees disabled by military service will continue long after wars

2011-12-26T21:45:00.000-05:00

The beginning of a series in the San Diego Union-Tribune:

The current generation of young war-wounded amputees like Sgt. Collin Raaz (pictured), a 25-year-old Marine scout sniper, will likely live 50 to 60 more years.

Vietnam War veterans demonstrated that, absent other medical complications, the life expectancy of amputees can be as long as their peers if they take care of their health.

But much remains unknown about the physical recovery of troops severely wounded in Iraq and Afghanistan, says Jennifer Town, director of C5, the combat casualty care program at San Diego Naval Medical Center in Balboa Park.

“Forward deployed medical assets are giving massive transfusions to these kids, and they are surviving. The lance corporal is putting tourniquets on his buddy,” Town says. Before modern products and measures to control blood loss, “the Raazes of the world would not have made it out of theater in wars past.”

Environmental contaminants are another wild card in their long-term health. “They’ve had exposures to many things. Afghanistan is a very dirty country. Infections and all those things that were taken care of initially with their acute care, is there a long term in any of that?” she wonders.

Federal finances are another unknown. There is little interest, so far, in slashing military health care funding to balance the budget, but “we have to be willing to go to bat and say there is an ongoing requirement for this population,” Town says. “We’ve got to keep the public aware.”
Improved care

Ryan Pavlu, an executive vice president of Wounded Warrior Project, an advocacy and support organization for post 9/11 combat veterans, said “early on when we started receiving heavy casualties, let’s be honest, we weren’t ready. (The Defense Department) wasn’t ready for the amount of casualties they were seeing and the seriousness of the casualties.”

Since then military medical care for the war wounded has improved significantly, Pavlu said, with increased staffing and better treatments.

Wounded service members continue to report shortcomings with care at some smaller regional health care facilities, an over reliance on medication instead of rehabilitative care, bureaucratic red tape, and the effectiveness of cognitive treatments for so-called invisible wounds such as traumatic brain injury and post traumatic stress.

But when it comes to health care for catastrophic physical injuries such as amputations, “especially at the major military facilities,” Pavlu says, “warriors are really getting top-notch care.”

The draw down of troops from the war zone, however, is going to produce another surge in demand for military health services. “They’re going to have physical injuries, mental health injuries,” Pavlu says. “We’ve got to have the health care system in place to take care of those needs. For a time, the health care system is going to be flooded.”

China restaurateur finds retention of employees in overlooked corner: intellectually disabled people

2011-12-26T21:12:00.000-05:00

From The China Realtime Report:

While businesses in China’s service sector often struggle to retain employees, Li Ping says he has had no turnover problems with his staff.

The Shanghai-based franchisee, who runs 500 Dairy Queen and Papa John’s Pizza outlets in China, hires many of his employees from a special training school in the city, called Ji Xun. It’s a school for the intellectually disabled.

Around 80 employees who have learning disabilities have been selling pizzas at 22 of Mr. Li’s Papa John’s stores or are crafting ice cream cakes at one of the Dairy Queen factories in Shanghai. They wear pins that say, “Please help me serve you better.” It encourages customers to give feedback on the service, which may be a little slower than at other stores, Mr. Li said.

Most of the workers have been on staff for three years now, some since 2007, when Mr. Li first started hiring the disabled for several Papa Johns outlets. The average turnover rate for other employees is a year or less, Mr. Li said.

The retention rate has been an unexpected reward for Mr. Li’s hiring decision, which he first made five years ago after meeting Special Olympics Chairman Timothy Shriver on a China visit. “I decided that I wanted to change the culture through enterprise, through action,” Mr. Li said.

The culture Mr. Li is referring to is the one in which the mentally disabled have been shunned and shuttered from Chinese society. When Mr. Li was young, he discovered that one of his neighbors had an intellectual disability and was “treated like a prisoner,” he said. Parents of the disabled boy physically locked him up.

Disabilities within China, as with many other countries of the world, are largely seen as social stigmas. Instances in which intellectually disabled children live in isolation or do not have proper care can still be found here, said Mr. Shriver recently in an interview with China Real Time.

But China has come a very long way in recognizing the rights of the disabled, Mr. Shriver said. “A decade ago, leaders were still discussing euthanizing this subset of the population, and now there are examples of integration and inclusion into society,” he said.

In some ways, China has surpassed the U.S. in its recognition of the intellectually disabled, Mr. Shriver said, recalling a recent conversation he had with the mayor of Shanghai, Han Zheng. Mr. Han mentioned that he’d consider creating a separate civil servants exam to enable government hiring of disabled persons.

“You don’t see this kind of progress in the U.S.,” Mr. Shriver said, adding that it’s also scarce to see an entire retail outlet run by intellectually disabled staff.

Over the past decade, the creation of wealth has catapulted the quality of life for most people in China, including those with disabilities, Mr. Shriver said. The government has allocated more funding toward special education, building more schools and opening community centers across the country.

Leaders have also been eager to demonstrate that their attitudes toward the disabled are modernizing. Shanghai hosted the Special Olympics World Summer Games in 2007. The nation’s largest television network, China Central Television, broadcast the events.

Government funding has helped the movement grow from having no participants a decade ago to more than 625,000 today.

There are two Papa John’s outlets in Shanghai that are fully operated by disabled employees.

Mr. Li said he’ll continue to hire more stores like this. He hopes to encourage other businesses to do the same.

In Minnesota, deaf man settles suit against Ramsey County jail for $230K

2011-12-26T21:07:00.000-05:00

From The St. Paul Pioneer-Press:

A deaf St. Paul man agreed Tuesday to a $230,000 settlement with Ramsey County over his jailing after a 2006 traffic stop.

Douglas Bahl (pictured), who claimed his rights were violated in the incident, and the county reached the agreement in federal court in St. Paul.

Under the deal, the county also agreed to change its jail procedures.

Bahl, a longtime sign-language trainer at St. Paul College, said police pepper-sprayed and beat him after refusing communication with him during the traffic stop. He was then jailed for three days.

In a lawsuit filed against the county in 2008, he said he was denied an interpreter to explain the charges against him, jail procedures and how he could be released.

According to the suit, Bahl also was given no special aids or devices to help him communicate with his family or attorney. His wife, who also is deaf, was in the hospital recovering from surgery at the time.

Police contended Bahl would not speak with the officers during the stop, grabbed an officer's jacket and punched and bit him.

Bahl was convicted in 2007 of misdemeanor obstructing legal process but acquitted of the more serious charge of obstructing legal process with force.

Jail officials said they offered Bahl use of a text-telephone device for the hearing-impaired, but he declined.

Tuesday's settlement stated that jail officials continued to deny Bahl's allegations.

Bahl's attorney, Roderick Macpherson III, could not be reached for comment Tuesday.

The settlement requires Ramsey County to ensure that deaf and hard-of-hearing inmates have means of communication that is "equally as effective as that provided for arrestees who are not deaf or hard-of-hearing" and provide such "auxiliary aids and services...without charge."

The settlement also requires the county to contract with or hire qualified sign-language interpreters and guarantee their availability at all times - within an hour of the county's taking custody of an arrestee.

But the lawsuit adds that the jail's "Deaf and Hard-of-Hearing Coordinator" - a new position - could determine "in writing that there is an equally effective means of communication or that the individual's request poses an undue financial or administrative burden." Such a statement would "include...the reason(s) for not providing the auxiliary aid the deaf or hard-of-hearing person requests."

The settlement also requires the jail to have a videophone, text-only cell phone and teletypewriter for inmates.

The Ramsey County Board of Commissioners signed off on the settlement Tuesday.

Randy Gustafson, Ramsey County sheriff's spokesman, said he would meet with jail officials today to determine what services the jail already offers and what changes need to be made.

Since the suit was filed, Gustafson said, changes have been made at the jail relating to talks with advocates for the hearing-impaired.

As for the new coordinator position, "It could be an existing staff member....We're trying to sort that one out," Gustafson said.

In 2008, then-Ramsey County sheriff Bob Fletcher said changes already had been made at the jail, including video conferencing for those with sign-language skills, email and text messaging services for deaf inmates. Fletcher said his department had secured contracts to make sure sign-language interpreters are available within four hours of the time someone is taken into custody.

The settlement gives Bahl and his wife, Susan Kovacs-Bahl, who joined him in the lawsuit, $57,500. Their attorneys, the Minnesota Disability Law Center, will receive $172,000.

The Bahls also have sued the St. Paul police department for officers' actions during the traffic stop; that suit is ongoing.

Deafness shaped Beethoven's music

2011-12-26T20:39:00.000-05:00

from AFP:

PARIS — Progressive deafness profoundly influenced Beethoven's compositions, prompting him to choose lower-frequency notes as his condition worsened, scientists said on Tuesday.

Beethoven first mentioned his hearing loss in 1801 at the age of 30, complaining that he was having problems hearing the high notes of instruments and voices.

By 1812, people had to shout to make themselves understood and in 1818, he started to communicate through notebooks. In his last few years before his death in 1827, his deafness was apparently total.

Writing in the latest issue of the British Medical Journal (BMJ), a trio of scientists in the Netherlands dissected Beethoven's string quartets.

They grouped these works into four ages, ranging from early (1798-1800) to late (1824-26).

The experts looked at the first violin part in the first movement of each quartet, counting the number of notes above G6, which corresponds to 1,568 Hertz.

Use of higher notes decreased as the deafness progressed, they found.

To compensate, Beethoven used more middle- and low-frequency notes, which he could hear better when music was performed.

But in the late quartets -- written by the time he was totally deaf -- the higher notes returned.

"When he came to rely completely on his inner ear, he was no longer compelled to produce music he could actually hear when performed, and slowly returned to his inner musical world and early composing experiences," says the paper.

The study is authored by Edoardo Saccenti, Age Smilde and Wim Saris of the Netherlands Metabolomics Centre in Leiden.

A video of the research can be seen on (http://www.youtube.com/watch?v=dLYhIwT5A5c&feature=youtu.be).

Blind music pioneer fires up Nigeria's modern sound

2011-12-24T21:12:00.000-05:00

From CNN:

LAGOS, Nigeria -- Like his long-time hero Stevie Wonder, Nigerian music pioneer Cobhams Asuquo (pictured) was born visually-impaired. And again, like the American R&B legend, the lack of sight was never enough to stop Asuquo from realizing his ambitions.

Instead, it only fueled his optimism and desire to achieve success.

"Being blind has played an integral role in forming who I am and I think to some extent is responsible for my optimism," says Asuquo, an award-winning music producer, song-writer and musician.

"When you feel there's nothing more to lose -- if you want to work towards anything, you probably will want to work towards gaining and I think that's what being blind has done for me."

A versatile musical talent, Asuquo has been pushing the boundaries of Nigeria's contemporary sound. His fresh mixture of different styles and beats has helped the west African country become one the continent's modern music hotspots.
Listening for Nigeria's next music star

"I fuse a lot of stuff to create my music" he says. "It varies -- it's jazz, it's classical, it's Afro, it's whatever, it depends on what best interprets the music."

'Ghana's Bob Marley' spreads message of brotherhood

Possessed of natural talent, the self-taught musician started honing his skills from an early age while growing up in a barracks.

As a young boy, he used to organize concerts in his neighborhood, drumming on his mother's barrels of water.

"All the kids from the neighboring block would come and we'd hang out and we'd make so much noise. I didn't realize at the time that I was preparing myself for what would be my life, my career path, my destiny," Asuquo remembers.

His musical journey, however, seemed to come to a halt a few years later when he entered university to pursue studies in law.

But Asuquo soon realized that he had to follow his musical passion, leaving university to embark on a path that, for a young blind musician in Nigeria, was far from easy to tread.

"(I had to) sleep on studio floors all across Lagos, worked at different studios, worked without pay, I've been out on the road, out on the streets, doing my thing," Asuquo recalls.

I feel there is a lot I've learned in my journey as far as music is concerned and I'm in a position to share that knowledge.
Cobhams Asuquo, music producer

"I had to convince people that I could do it -- I had sessions that were canceled because they weren't sure I could deliver either because they thought I was too young or maybe as a blind person, 'how do we trust our music which is our future and investment?'" he adds.

But it didn't take long for Asuquo to prove himself as his musical talent soon began to shine. Over the next few years he went on to work closely with internationally-renowned artists such as pop sensation Asa and R&B star Darey and today he is a much-in demand producer operating from his own studio.

Meet Asa, African pop legend in the making

He is also a judge on Nigeria's "Project Fame," a television musical talent show where he helps young singers achieve their dreams.

"It's important for me to mentor and inspire fresh talent, to work with fresh talent," he says.

But Asuquo is not only interested in helping out fledgling music stars. He also sees himself as an ambassador for blind young Nigerians who still face many challenges in their daily lives.

"I think it would be meaningless if I can achieve as much as I can achieve and as much as I hope to achieve and I'm not able to affect other blind people," he says.

"It is time to bring to the fore the needs of people with special needs and just how much they can contribute to growing Nigeria as a nation and the world."

Director Stephen Daldry talks Asperger's, depicting 9/11 in 'Extremely Loud and Incredibly Close,' and the Oscars

2011-12-24T21:05:00.001-05:00

From The Playlist on Indie Wire:

At present, up to the imminent release of “Extremely Loud And Incredibly Close,” Stephen Daldry is three-for-three in terms of films to Best Director Oscar nominations; there’s clearly something about the stories he tells hitting a nerve among Academy voters, no matter how challenging (“The Hours”) or even controversial (“The Reader”) his subject matter. 'Extremely Loud' suggests that he’s as interested as ever in posing hard questions and finding powerful answers, as he brings to life Jonathan Safran Foer’s novel about a child with Asperger’s who takes an extraordinary journey to come to terms with the death of his father during 9/11. The Playlist spoke to Daldry in New York last week, where the acclaimed filmmaker shrewdly posed a few queries of his own as he revealed the personal and professional motivations for taking on tough stories.

To get started, talk about your approach to this adaptation, since it’s material that’s weighted with a lot of emotional substance, in order to make sure that it isn’t maudlin or exploitative?

Well, the first question is, when did you see the movie?
I saw it Friday.

How was it?
Um, I liked it. Many of my questions for this interview are based on viewing the film, especially about the kid, but I really liked Max Von Sydow, and the scene with Jeffrey Wright in his office is just phenomenal.
Do you think we made any mistakes in our portrayal of 9/11?

I was a little skeptical about the imagery of [REDACTED], but it obviously feeds into what this child’s nightmare is about what happened to his father. It made perfect sense, but I wasn’t sure how I personally felt about seeing that.
I’m with you on it. I think that’s right. And there was a whole discussion in my own head about what was appropriate to show and what was not appropriate to show, and that particular image that you’re talking about was one that caused me the greatest discussion – should we show this, should we not show it, and I just thought that the reason it’s in is because I thought it was in the entry for what the kid was imagining how his father might have died. And that’s why I left it in, but it was a big debate.

This child seems to be a representation of people’s understandably mixed reactions to 9/11 – confusion, anger, and a search for answers and resolution. How much did having a child who has Asperger’s, who may not have focused reactions to things, enable you to articulate a lot of feelings that are maybe less politically correct, and at the same time explore them honestly?
What a complicated question. I mean the first thing, the honest answer to that is, telling the story through the eyes of a boy was not my choice, it was the choice of Jonathan Safran Foer, who wrote the book. That comes as a given, so the question should really go to Jonathan: why did Jonathan want to tell it [that way]? I mean, that is a great question for Jonathan, and I’m sure he would be the right person to answer it. But my responsibility is to Jonathan, to tell the story that Jonathan wrote, and to make that into a movie, knowing that the two mediums are entirely different. And I have a responsibility to my own emotional responses to 9/11 to make sure that I’m doing what I think is truthful and what I think is appropriate – and to steer it away from things that I don’t think is appropriate. For example, I had to make the choice about whether I wanted to see Tom Hanks in the North Tower, and I just felt I really couldn’t go there; it was just really a step too far for me. And even images, like, do I really want to see the Twin Towers? Do I really want to look at the Twin Towers burning, and in the end, the only reason you do see the Twin Towers burning is because the office, the location we were looking for Sandy [Bullock] to work in had a direct view downtown of the Twin Towers, but through this really sort of refracted old New York glass, and I thought, I can possibly bear looking at it if it’s through this refracted glass. And it was a real view from that office. So I thought, well, I’ll do it – not just that she’ll take the phone call, but walk up to the windows so that she can actually see where her husband is, even though it’s through this refracted glass. So all of those choices were made in getting ready for the movie. But it’s a movie about catastrophic loss, and a special child who is somewhere on the autistic spectrum, trying to find his own logic – trying to make sense of something that literally doesn’t make sense to him. And then, I think the story is about a family in catastrophic grief who start to re-form -- and I don’t think I’m talking about healing, I’m talking about a family that’s beginning to come together after that terrible loss. I think everyone will have their reaction to what is true to this story, and that is entirely appropriate – everybody’s got their own 9/11 stories. And everybody has their own way of looking at it, as you quite rightly said. It will be too much for some people, and other people might find it difficult, but it has to be a personal response.

How much research did you do or feel was necessary to portray someone with Asperger’s accurately, without testing the audience’s sympathies when he’s saying some hurtful things to the people around him?
We did a lot of research. I mean, as the kid says in the movie, the diagnosis was inconclusive whether he has Asperger’s or not, but I spent a lot of time with different experts of Asperger’s and talked to them. Every child is different on the autistic spectrum, so we created our own version of a child that was in some way – not heavily, but somewhere on that spectrum in terms of the fears and the phobias. And that’s even down to color and fabric and touch and smell and noise and focus, where the depth of field and focus was, and where it could be, and all of those things. We spent a long time getting into them, and that’s why in the film sound and focus is so important, not just to the movie but in the creation of the character and how he moves and exists in the world – I viewed it as an emotional landscape. And obviously, the last thing I wanted to do was portray a Disney kid; this is a kid who’s in trouble, and the last thing I wanted to do with that kid was have a cutesy kid that’s demanding of the audience’s sympathy. He may earn the audience’s sympathy, but not demand it – I think that would have been terrible.

Having directed three other films which were nominated for Academy Awards, do you think consciously about the fact that the material you choose may attract that kind of attention?
I don’t. I don’t think about it.

This is a film which, because of its performances and how powerful the material is, may earn that kind of attention. How does it feel to be catapulted into that context, with or without trying to?
We’re not in that context. You know, I think we’re all a way off from that, and the Academy will have to make up their minds about what they deem [worthy], or how they want to hand out their medals. And I think that’s absolutely fine. Right now, I finished the movie less than a week ago, so it’s not really on my radar at all at the moment.

“The Reader” and “The Hours” have a tableau-like storytelling that’s similar to this one, even though the subject matter is very different. Is there anything that consciously draws you to these sorts of projects, as opposed to something like an action movie or a romantic comedy?
I never know. That’s the honest truth, and you never know what material speaks to you, and what material doesn’t speak to you until it lands. And this one landed and I read it straightaway, and straightaway, I rang back to my old friend Scott [Rudin] and said, count me in. I can’t say there’s any pattern or logic or any thought into a career in that sense, although obviously I would really like to make the next “Batman,” after Chris Nolan.

What’s the general nature of your collaboration with Rudin, in terms of him bringing you material or vice versa?
Scott is one of the greatest people in cinema today to find material that speaks to him, and I’m glad that he sends it to me. And, he’s one of my best friends, so we work very closely together, and he’s a great person and a great friend.

How much thought have you given to that Richard Curtis project, “Trash,” as a follow-up to this? And how much can you think about what’s next while you’re finishing the project you’re on?
None. My next project is the 2012 Olympic Games in London, so I’ll be doing the Olympics for the next year.

Is “Trash” something you’ll definitely be doing in the future?
You know, who knows? That’s the honest answer to that. But I’d love to work with Richard, because he’s a great guy.

Is there any book or property that you do have a strong emotional connection to?
Batman.

Batman?
I’m competing with Chris Nolan to make the next “Batman.” I want to make “Batman.”

Why is that?
Because it’s a great story! And you get lots of toys.

If you made a “Batman” movie, is the machinery of that kind of film something you think you would be comfortable with?
I was joking. I wouldn’t know where to begin, and there’s lots of people that do that really well, and they should get on with it and I can enjoy it when I see it in the cinemas. But no, I don’t think I would very good at it.

In treating disabled people in New York, potent drugs and few rules

2011-12-24T00:04:00.001-05:00

From The NY Times:

Something was happening to Katie Strignano (pictured).

After she was moved into a state-run group home, the 26-year-old woman, who is severely mentally retarded, started gaining weight, drooling, breaking out in pimples and pulling out her hair, leaving a bald spot the size of a softball on her head.

Her mother, Debra Strignano, suspected that someone had increased her daughter’s medication without her family’s consent.

When she asked for a copy of a consent form she had once signed for her daughter, she discovered it had been altered, tripling the daily dosage of Clonidine, which is used to control attention deficit disorder. The drug, and four others her daughter was taking, have myriad potential side effects, including rapid weight gain, skin rashes and drowsiness.

In response to questions from The New York Times, state officials said they would investigate how the consent form was changed and whether Katie Strignano was receiving the appropriate dose of medication.

“Everything with them is, let’s sedate the kid instead of trying to solve the problem,” Ms. Strignano said. “They want to dope her up; they want her to sit there like she doesn’t exist.”

Tens of thousands of powerful pills created to treat serious mental illnesses like schizophrenia are given to developmentally disabled people in the care of New York State every day.

But a review by The Times of previously unreleased records, as well as interviews with state employees, clinicians, family members and outside experts, reveals that the psychotropic medications, which alter the brain’s chemistry, are often dispensed sloppily, without rigorous or regular review, by general practitioners with little expertise in the area.

And low-level workers at state group homes are frequently given discretion to increase the medication “as needed,” despite their lack of significant training.

Psychologists who have worked inside the system describe a culture in which the drugs are used to control the disruptive behavior of the developmentally disabled — people with conditions like autism, Down syndrome and cerebral palsy — an approach increasingly discredited in the field.

The problem is that people with mental retardation, because of their condition and diminished intellectual capacity, commonly exhibit symptoms similar to those seen among people who have impulse control, anxiety or attention deficit disorders.

Psychiatrists and psychologists interviewed by The Times said those symptoms were best treated through therapy and one-on-one guidance of the developmentally disabled. But state records indicate that the doctors are often instead treating them with the psychotropic drugs, which do not address their underlying problems and can be harmful.

“It’s a mistake,” said Dr. Andrew Levitas, an associate professor of psychiatry at the University of Medicine and Dentistry of New Jersey who specializes in developmental disabilities. “Using antipsychotics to suppress behavior is an old practice used by people who aren’t acquainted with the advances in the field.”

The Times review found that 4 of the top 10 medications or supplements given to the developmentally disabled in the state are psychotropic, according to Medicaid records. In fact, developmentally disabled residents of group homes in New York are more likely to be given Ativan, an anti-anxiety drug that has a tranquilizing effect, than multivitamins, the records show.

Concern about drug use was one of the most frequently raised issues in inspection records reviewed by The Times; in the last five years, all nine state residential institutions for the developmentally disabled have been repeatedly cited by Health Department inspectors for failing to provide proper oversight of psychotropic drugs.

The drugs can have serious consequences. Risperdal, the second most frequently prescribed, was developed to treat psychotic disorders and has been approved for controlling aggression among people with autism. But its side effects can be extreme, including breast growth in adolescent boys, which in a small number of cases require mastectomies.

And even the use of the drugs to control behavior is questionable. A 2008 study published in the medical journal The Lancet found that psychotropic drugs like Risperdal were less effective at treating behavioral outbursts than placebos.

Dr. Roy Q. Sanders, who is the medical director of the Marcus Autism Center in Atlanta and has worked in New York, said, “I tell people all the time that the medications are really blunt tools when it comes to making substantial differences in behavior in developmentally disabled individuals.”

To be sure, the issue is a complicated one: developmentally disabled people are more likely than the general population to suffer from mental illness.

But the records examined by The Times show that some developmentally disabled residents received psychotropic drugs without ever getting a clear diagnosis of mental illness. Even among those who have a mental illness, the records indicate that the state’s use of the drugs can be overly aggressive.

During the last few months, as The Times has sought information about the state’s use of medications, the Office for People With Developmental Disabilities has acknowledged that there are problems, and began to develop sweeping guidelines for the use of medication. The new rules say medications “shall not be used for disciplinary purposes” or “as a substitute for supervision.”

“We know that less intrusive techniques work,” said Courtney Burke, commissioner of the Office for People With Developmental Disabilities, which oversees thousands of group homes and larger state facilities.

Ms. Burke said her agency was developing software to track the use of psychotropic drugs better and was creating a position, a chief of pharmacy, to oversee how drugs are used. New regulations, she added, would “help move the system to one that does not rely on medication or physical intervention.”

The Clinician’s View

Diana Valitutto, a former state psychologist, said she resigned from the Office for People With Developmental Disabilities in 2004 after concerns she raised about the use of psychotropic medications were ignored.

State law says that “no medication shall be used for the convenience of staff” and that “special attention shall be given to those individuals receiving psychotropic medication.”

But oversight is limited. Although psychotropic drug use is supposed to be regularly reviewed, records show those reviews are seldom rigorous. The bar is higher in Massachusetts, for example, where state officials must have the approval of a judge to use drugs classified as antipsychotic.

“It’s worked well to protect people with mental health and cognitive impairments over the years,” said Marianne Meacham, general counsel at the Department of Developmental Services in Massachusetts. “It’s somewhat burdensome, but it’s definitely an important protection.”

In New York, Ms. Valitutto grew so worried about the overuse of drugs that she went to the Commission on Quality of Care and Advocacy for Persons With Disabilities, a state oversight agency, with examples of residents on what she believed were overly aggressive regimens of psychotropic medications.

“I saw people being medicated to control behavior to such a degree that to me it was obviously and clearly affecting their health, their safety, their quality of life, their ability to participate in the daily activities of living, and in some cases threatened their lives,” Ms. Valitutto said.

Ms. Valitutto said there was little consistency in how drugs were used: In central New York, she said, they were dispensed carefully and ethically. But that was not the case in the Albany area. A retired state psychologist who was approached independently by The Times vouched for Ms. Valitutto’s professionalism and offered a similar account, saying the residents in that region were often treated with multiple medications from the same class, a practice discouraged by the medical establishment.

“We would always go to drugs,” the psychologist said. “Once you get a client on a lot of medications, it’s hard to know what’s working and what’s not, and it’s hard to get them off.”

The commission, which declined to comment, never took any action on the concerns brought forward by Ms. Valitutto, and she resigned.

A Chronic Problem

Every year, the State Health Department inspects New York’s nine large residential facilities for the developmentally disabled. A review of 2,000 pages of inspection records found repeated violations of basic protocol for drug treatment at all of them.

A resident at Bernard Fineson, a state institution in Queens that is perennially cited for violating drug administration policies, was on a drug diet of Risperdal, Ativan and the antiseizure medication Depakote, but inspectors wrote that “there is no evidence of a team review regarding justification for the current medication regime.” A resident at a Hudson Valley institution was on seven psychotropic drugs, along with Benadryl; inspectors worried that “there was no process evident that evaluated the risks of the untreated behaviors against the risks of the medication.”

At an institution in Broome County, inspectors reviewing the records of several patients could not even figure out what behavioral problems were being treated with drugs like Depakote, lithium, Thorazine and Zoloft.

The nonprofit facilities overseen by the state are not much better.

During a recent six-year period, Living Resources, a nonprofit organization in Albany that cares for about 300 people, was cited for 11 violations related to misusing drugs to control inappropriate behavior. That is the most of any nonprofit provider in the state in that period of time, according to inspection data analyzed by The Times.

“We have a lot of people that we care about and care for,” said Fredrick W. Erlich, the Living Resources chief executive officer, adding, “We are going to make mistakes.”

In search of alternative approaches, state officials are now studying the practices of the ARC of Delaware County, a small nonprofit group serving the developmentally disabled in the Catskills. The group has a policy banning what they call “pharmacological restraints,” or the use of drugs for reasons beyond treating medical problems.

“We’re not antimedication, but we believe people need the least amount to take the edge off so they can be available for teaching, and ultimately as they learn, those medications get reduced and eliminated,” said George Suess, chief executive of the ARC of Delaware County. He added that his residents “are functioning, they are learning, they are not zombied out, sitting in a corner like vegetables.”

A Sister’s Keeper

Taraneh Vargha’s sister was on so many psychotropic medications at her group home in the Finger Lakes region that her hands would shake, her body temperature fluctuated, her heart raced and her chest ached. She had tardive dyskinesia, a disorder characterized by involuntary repetitive movements that is common among people on high dosages of antipsychotic medications.

The sisters are both Iranian-born American citizens and members of the Bahai faith, whose members have been persecuted in Iran since the Islamic Revolution in 1979. Ms. Vargha’s sister received a number of shifting diagnoses over the years, including autism-related disorders, mild mental retardation, post-traumatic stress, bipolar disorder and schizophrenia.

At the same time, state officials conceded in records obtained by The Times that they did not really know what her diagnosis was; assessing her has been complicated by the fact that Ms. Vargha’s sister is far more fluent in Persian than English.

Despite confusion about her diagnoses, there has been clear concern expressed in state records about the volume of drugs she was being given. None was more prevalent than Geodon, an antipsychotic made by Pfizer. Ms. Vargha protested after her sister, 47, was given as much as 360 milligrams per day; the maximum dosage recommended by the Food and Drug Administration is 160 milligrams.

In a statement, Easter Seals, which operates a clinic that prescribed the medication to Ms. Vargha’s sister, said the choice to provide such a high amount of Geodon was “not uncommon” and done “with close monitoring.” It added, “We do not believe the dosage prescribed was a mistake, but that it was done consistent with appropriate protocols.”

The Times asked Dr. Levitas about such a dosage.

“It is not only not accepted, it is dangerous,” he said, adding, “I’ve never seen Geodon used at that dose before.”

The Office for People With Developmental Disabilities reviewed the case after being approached by The Times and is referring it to the Commission on Quality of Care. “What we have found,” the office said, “is sufficiently concerning that we have determined an independent, external review is necessary.”

Records obtained by The Times show state officials expressing alarm, even if they took little action.

“The Geodon is well above (i.e. 3x above) the typical upper level for this med. This is of great concern,” says a report in August 2008, drafted by an oversight committee in the Finger Lakes division of the Office for People With Developmental Disabilities. “This is a very large dose of Geodon,” said another report from September of that year. And yet it continued. A review by the Health Department said the Geodon dosage in 2009 was “excessive and much above the F.D.A.’s limits.”

Geodon dosages were drawing scrutiny from federal prosecutors at the same time. In 2009, Pfizer paid $301 million to settle allegations by the Justice Department that company representatives marketed the drug for unapproved uses and encouraged doctors “to prescribe the drug at substantially higher than approved dosages.”

Like all psychotropic medications, Geodon has potential side effects, like anxiety and weight gain, and far more serious risks, including vision problems. And Ms. Vargha’s sister was also taking four other psychotropic drugs, each with its own potentially damaging consequences.

Ms. Vargha fought for years before her sister’s dosages were reduced. “Why on earth would we give psychotropic medications to a population that is already vulnerable and struggling to use their brain?” she wrote in a letter to the state this year. “Why do we want to numb and dumb them more?”

Three months ago, increasingly desperate, Ms. Vargha, 56, removed her sister from the group home, and took her to her house.

When a reporter visited Ms. Vargha’s home recently, her sister was disoriented and briefly mistook the reporter for an Iranian policeman. At night, she walks the hallways, speaking Persian.

“She’s getting better, she’s eating now a bit, but she doesn’t sleep,” Ms. Vargha said. She hopes to get her sister back on her feet soon and move her into a group apartment in Rochester — where she hopes her sister can regain some sense of herself.

“My sister came with so much hope to this country, America, the land of freedom,” she said. “When she became a citizen, she put both arms up and said, ‘I love this country.’ ”

She added, “I want her to experience what she believed in.”

Autism-friendly Santas a hit at malls, parties

2011-12-23T22:14:00.000-05:00

From USA Today. This photo provided by Darlene Borre, shows her son, Ben Borre, 10, of West Hartford, Conn., with an autism-friendly Santa Claus, Ray Lepak of Manchester, Conn.

HARTFORD, Connecticut – Visiting a shopping mall to share Christmas wishes with Santa had always been too much for 10-year-old Ben Borre, due to the autism that makes the noise, lights and crowds an unbearable torment.

But now a growing number of "sensitive" Santas in shopping centers, at community parties and elsewhere are giving Ben and others a chance to meet the big guy in autism-friendly settings — allowing their families to capture Christmas memories that other families may take for granted.

Ohio-based Glimcher Realty Trust recently started offering sensitive Santa sessions in its two dozen malls nationwide, and service organizations and autism family groups have recruited low-key Kris Kringles who adjust their demeanor to the special needs of their young guests.

"Every parent dreads the noise and chaos of the mall Santa scene, but this isn't even dreading. It's just literally un-doable for us," said Darlene Borre of West Hartford, Ben's mother.

Ben, a nonverbal fourth-grader, is among the up to 1.5 million Americans living with autism spectrum disorders that can include delays or disabilities in communication, behavior and socialization. They can range from mild difficulties to significant impairments that make it difficult for those children to interact with others.

Many children with autism are especially sensitive to loud noises, jangling music, crowds and unpredictable situations, and could not wait patiently in a long line to see Santa.

The Borres tried without success a few times over the years to grab quick snapshots if Ben walked close enough to any Santa, but with mixed results.

Now, he visits an autism-friendly Santa each December at a local playground. The sensitive Santa happens to be Ben's grandfather, Ray Lepak, who was compelled after seeing what his daughter's family was experiencing.

"Just because a family has a child with special needs doesn't mean they don't want all the same memories that everyone else does," Borre said. "We all want those same holiday joyful moments; it just has to be approached differently."

Ben's sister, 4-year-old Lila, who does not have autism, and is getting wise to the fact that Santa and Grandpa bear a suspicious resemblance. But she's not letting on to Ben.

Lepak, 69, of Manchester recently donned his Santa suit — plus a brand-new beard and snow-white wig — and met with several Hartford-area children and their parents. He's learned over the years how to pep it up for siblings who don't have autism, and how to tone it down for children who seem overwhelmed.

He starts with a few mellow "Ho, Ho, Ho" greetings, watches for those who are intrigued, and smiles or beckons to them to come closer. Many steer clear but watch him, either curiously or warily, while others remain disinterested.

"You'll see them watch Santa out of the corner of their eye, then little by little they'll come closer, then walk away as if you're not there, and come back in a bit," Lepak said. "It's really about following their lead and communicating on their terms."

Some will give him a high five; the braver ones might sit on his lap. At the recent gathering, one child had no interest at all in Santa until he realized that the big guy in the bright red suit was willing to push him on a swing — and those fleeting moments were enough for the boy's family to snap pictures.

A growing number of malls also are setting aside special times for sensitive Santa visits when the shopping centers would otherwise be closed.

A recent autism-friendly Santa visit at its Northtown Mall in Blaine, Minnesota, just outside of Minneapolis, drew 55 children despite poor weather, and last year drew more than 100.

Linda Sell, Northtown's marketing director, said the two-hour window on a recent Sunday morning was devoid of lines and the bustle of a regular Santa visit. Instead, children could play and color nearby until their number was called.

Sell said they also turned off the Christmas music, dimmed the lights, sent maintenance workers and other potential distractions away, and asked parents to fill out a form to give Santa the heads up on the boys' and girls' wish lists.

"Some kids will sit next to Santa. Some will want to stand a little farther away and look at him, or sit in the chair next to him, or have mom or dad next to him," Sell said.

For a child on the autism spectrum, sometimes the smallest item or gesture can spark a connection — such as the Northtown Mall Santa's gold watch or the tiny Christmas train that rotates inside of it.

"It's so hard on some of these families trying to take some of the kids out," Lepak said. "What a feeling that is, when I'm inside the Santa suit and I see those little innocent faces. They love it and it warms my heart."

Way to go, Gov. Cuomo!! Compromise reached - NY City cabs to be wheelchair accessible

2011-12-21T10:33:00.000-05:00

from WNYC:

Governor Andrew Cuomo has agreed to sign Mayor Michael Bloomberg’s controversial taxi legislation with some big tweaks.

The major change is accessibility.

Cuomo announced on Tuesday a compromise was reached expanding taxi service in Upper Manhattan and the outer boroughs, by allowing livery cabs to pick up street hails, and finally meeting his concerns about ensuring wheelchair accessibility.

Under the new agreement, 2,000 yellow medallions will be auctioned and all must be wheelchair accessible.

The bill that passed earlier this year would have made available 1,500 medallions available with only 500 set aside as accessible.

"No one thought we'd get this home," the mayor at the press conference via telephone. "We never gave up and we never stopped making the case."

The legislation authorizing the sale of the medallions, which will generate $1 billion in revenue for the city, has been held up for weeks by Cuomo, who said the bill did not provide enough accessible cabs, and would be shot down in court.

The city is currently awaiting a federal court decision that alleges the Taxi and Limousine Commission discriminates against people in wheelchairs, violating the Americans with Disabilities Act. Currently, only about 2 percent out of the city’s fleet of more than 13,000 yellow cabs are accessible.

To address this, Tuesday’s agreement requires the city to propose a long range accessibility plan. The TLC must consult with disability groups and other stakeholders before submitting a Disabled Accessibility Plan. The proposal will then be open for public comment and be sent to the City Council, as well as the State Department of Transportation for approval.

As for permits for outer borough livery cabs, 18,000 permits will be made available over the next three years, and 20 percent of those cabs must be accessible. The city's original plan had called for 30,000 permits.

The city will be required to provide grants as an incentive, of up to $15,000, to help pay for the retrofitting of livery vehicles or to purchase new accessible cars.

The livery permits will cost $1500 to start, but then immediately become transferable medallions, something many livery drivers had pushed for.

Yellow medallion fleet owners have led industry opposition.

They’ve argued that allowing outer borough street hails will devalue their medallions. “[The plan] would also threaten the short and long term viability of the medallion asset that has provided economic opportunities for thousands.” Ron Sherman, president of T=the Metropolitan Taxicab Board of Trade, said in a statement. “We hope this new bill has the teeth to protect our industry and we will cooperate with the Governor to achieve this goal.”

TLC Commissioner David Yassky said the agreement "will bring first rate, legal taxi service to all five boroughs." He also attempted to avoid some questions that doubted the mayor’s record on promoting accessible taxi service

Disabled groups, including the Taxis for All Campaign applauded the announcement, happy to be the focus of the deal hammered out by the various political camps.

Chair Edith Prentiss said “This deal will mean that people who are disabled will have the same option as every other New Yorker: the ability to travel spontaneously, quickly and easily when they are going to their jobs, to school or just out for a night on the town.”

The agreement will be introduced as a chapter amendment in the next session legislature in 2012.

California parents say Riverside School District pressured them to waive special education rights

2011-12-21T00:20:00.000-05:00

from California Watch:

By the time Krista McGhee pulled her son from school in the Riverside Unified School District (pictured), she said the fourth-grader had taken to hiding under his desk, been bitten by his classmates and been bruised by a teacher's aide trying to restrain him. McGhee's son, who has Asperger's syndrome, had been in a special day class for emotionally disturbed children since second grade – a setting she said had devolved into "a nightmare."

Fearing for her son's safety, McGhee asked the district to hold an emergency meeting to discuss his individualized education program, a federally mandated document that guides the goals and services for each public school student who receives special education.

A program meeting requires the participation of a specific group of people, including special and general education teachers. Instead, two district officials presented McGhee and her son's father, Mark McGhee, with what the parents said was a "take it or leave it" settlement: Their son would be placed at the school they wanted, but they would waive several rights under state and federal law, including the right to request changes to his individualized program for the next 16 months and the right to file claims against the district during that time.

"I was just at my wit's end," Krista McGhee said. "I felt like a soldier with battle fatigue. … I felt backed into a corner." The McGhees signed the agreement within an hour.

The McGhees and another parent, Mojdeh Ghadiri-Asli, claim in lawsuits that Riverside Unified pressured and duped them into signing agreements that violate state and federal special education laws.

"They're sort of blindsided," said Heather McGunigle, the Inland Empire director at the Disability Rights Legal Center and an attorney for the families. "Even though they got something out of the contract, what they lost was something significantly greater, which was the right to participate, which they were not aware was going to happen."

The lawsuits – the McGhees' was filed in October, Ghadiri-Asli's last year – are pending in U.S. District Court in Riverside. Jack Clarke, an attorney for Riverside Unified, said the school district is "actively trying to resolve these matters through negotiation and discussion with the families through their legal counsel."

It is not illegal or even unusual for school districts and families to enter into settlements regarding special education placement and services. But the practice needs parameters to protect parents' procedural safeguards, McGunigle said.

McGunigle said she believes there are other parents at Riverside Unified with experiences similar to those of her clients. The district serves about 4,500 special education students.

"They (Riverside Unified) engage in this sort of method of administration, and they have a practice of doing this," she said.

The practice is one the district's director of special education, Tim Walker, has been criticized for in the past. In 2008, under a settlement with the Santa Monica-Malibu Unified School District, Walker resigned as the district's deputy superintendent after coming under fire for using confidential settlements in special education disputes.

Prior to Walker's resignation, the district commissioned an independent evaluation of its special education program. The report, conducted by Lou Barber and Associates and released in March 2008, found Santa Monica-Malibu, which served about 1,400 special education students annually, used settlement agreements "to a much greater extent than school districts in the region" – more than 140 over three years.

While most districts declined to disclose the number of settlements they signed, all said the agreements were used "on a very limited basis," the report said. Several districts said they'd signed no settlements for several years; others estimated using fewer than 10 to 15 during the school year. The Southwest Special Education Local Plan Area, which includes 12 Southern California districts and about 12,500 special education students, reported about 20 settlements through March of the school year.

Walker is not named as a defendant in the Riverside Unified lawsuits and did not return requests for comment. At a 2006 Santa Monica-Malibu school board meeting, he defended the practice of resolving disputes as "the least contentious level," according to The LookOut News in Santa Monica.

Rick Miller, superintendent of Riverside Unified, said he could not speak to the district's use of settlements. Miller, who joined the district in 2009, after Walker was hired, said he was not aware of the district's special education practices being different from others in the state. He added that in any kind of settlement, not just in special education, "nobody is compelled to sign anything."

In court documents, Riverside Unified said that the McGhees and Ghadiri-Asli had "considered its (the agreement's) effect" and that the settlements were "fair and enforceable."

The parents say they did not know what they were getting into when they signed.

Although the McGhees were allowed a week to review the settlement's terms, Krista McGhee said they could not afford an attorney. In the meantime, if they kept their son home, he could be considered truant and they could face steep fines, she said. If they did not sign, their son would have to return to a classroom they believed was unsafe.

Ghadiri-Asli said she was offered just a few hours to review her two-page settlement. She wanted the district to retain her daughter, who has severe language, visual and social behavior impairments, in sixth grade; the district disagreed. Officials gave her until 5 p.m. that day to sign a settlement that would keep her daughter in sixth grade but required she waive several rights for the remainder of the school year, she said.

"You don't have anybody to talk with, and you have this paper that says 'sixth grade' – and that's what I want," Ghadiri-Asli

Ghadiri-Asli, whose native language is Farsi, said the document was difficult for her to understand. Before changes are made to a child's special education plan, districts are required by the federal Individuals with Disabilities Education Act, or IDEA, to provide prior notice and other information to parents in their native language. But Riverside Unified did not do so, Ghadiri-Asli said.

The lawsuits ask the court to award the parents' children compensatory education and services, damages, legal fees, and costs.

McGunigle also wants the lawsuits to bring about a policy change at Riverside Unified, so that parents know when they are entering into a settlement negotiation and that the terms of such agreements are clear and explicit.

Making sure parents are informed when they sign special education settlements is "just common sense," said S. James Rosenfeld, director of the Academy for IDEA Administrative Law Judges and Hearing Officers and of the Seattle University School of Law's education law programs.

"The question is, what do you have to do to assure they have to know? That raises questions about the right to legal assistance," he said. "Most families with special education problems do not have the resources to hire an attorney."

The trend toward settling special education disputes began several years ago, after two U.S. Supreme Court rulings, Rosenfeld said.

In 2005, the court ruled that the onus is on parents who disagree with a district's special education plan for their child to prove that the plan would not provide the "appropriate" education guaranteed by federal law. A year later, the court said parents who prevail in special education disputes cannot recover fees paid for expert witnesses, whom Rosenfeld said "you simply cannot win these cases without."

A formal negotiated settlement typically comes after an administrative hearing has been requested or held, or possibly as the result of mediation, Rosenfeld said. To regularly employ formal settlements at an early stage of a dispute "sounds pretty fishy," he said.

While settlements often state that prior claims are resolved, requiring parents to waive future claims against a school district, as Riverside Unified did, is concerning, said Julie Waterstone, director of the Children's Rights Clinic and an associate clinical professor of law at Southwestern Law School.

"Kids change, their needs could change, so if you're saying, 'I'm never going to raise an issue again,' you're essentially precluding them from participating in the team process," she said.

That process, Waterstone said, tends to work best "for the more sophisticated and savvy parents who are very familiar with the education system. It works for parents who have the ability to hire lawyers. It works less well for monolingual Spanish speakers and parents with limited resources."

Rosenfeld is now developing an arbitration system for special education disputes that he said would "eliminate the advantage schools have of having an attorney and parents don't." He said it would also be cheaper and faster than due process or mediation. He'd like the outcome of arbitration – which could include waiving certain rights – to be binding for the remainder of a school year.

"Assuming for the parents this is a knowledgeable waiver, fully informed," Rosenfeld said, "why shouldn't they be able to do it for a year?"

British Paralympian superstar Tanni Grey-Thompson says Paralympics would "disappear off the face of the earth" if merger with Olympic Games takes place

2011-12-18T23:42:00.000-05:00

From BBC Sport:

Baroness Tanni Grey-Thompson (pictured) says the Paralympics would "disappear off the face of the earth" if a merger with the Olympic Games took place.

A recent survey suggested only 18% of those asked plan to watch all or most events at the 2012 London Paralympics.

Grey-Thompson said if the Games were merged "a few Paralympic events would be picked up and put in the Olympics".

She added: "That way we wouldn't have an opportunity to showcase the vast majority of sports like we do now."

The survey questioned 386 disabled people in Britain and 111 parents and eight carers of disabled people. It was released two weeks ago by the charity Scope and also found less than a third plan to watch all or most of the Paralympics.

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."

The survey revealed that 61% of those polled saw the Games as an opportunity for disabled people, just 23% said they were excited, while one in five thought the Games made disabled people seem second class.

Despite the results of the survey, 16 of the 20 sports for the 2012 Paralympics, have already sold out.

The British Paralympic Association said that showed a big public appetite for Paralympic sport.

The Paralympics run from 29 August to 9 September next year in London and feature around 4,200 athletes in 20 sports, including South Africa's Oscar Pistorius and Britain's David Weir.

'Rock Band'-style game developed for blind people

2011-12-18T19:21:00.000-05:00

From msnbc:

The rhythm game revolution has largely ignored a significant segment of the population — blind people. If you have vision problems, you are unable to follow the titles' on-screen prompts. The creators of "Rock Vibe" (pictured) are trying to fix that by developing a "Rock Band"-style game that can be played by blind and sighted people alike.

In addition to an on-screen stream of notes, "Rock Vibe" tells players which guitar buttons or drum panels to hit by sending timed vibrations to specially designed, wearable equipment. The game is built on top of a free PC rhythm game called "Frets on Fire," and is not affiliated with the official, Harmonix-developed "Rock Band" available on consoles.

First created by three University of California, Santa Cruz researchers in 2008, "Rock Vibe" has since been featured in a number of computer accessibility conferences and journals. But now the developers are looking to raise money through Kickstarter to help develop a more professional, commercial version of the game.

That effort has already drawn over $12,000 in donations, though the developers are looking for at least $20,000 more by Jan. 20 to help fund research and development, testing and promotional travel, as well as to provide free games to schools and centers for the blind. Those who contribute can receive copies of the finished game and even personalized features, depending on how much they donate.

"Rock Vibe" isn't the first game designed for sightless play — there's a long tradition of audio games meant to be played without any visual input, and coders have made blind-accessible conversions of traditional games ranging from pinball to first-person shooters.

But the earlier titles have largely failed to keep up with the latest advances in gaming, the "Rock Vibe" creators say, and are often too simple to keep the interest of sighted players who may want to play, too.

Warner Bros. buys film rights to Indiana mother's memoir about her autistic son's journey to become math genius, 12-year-old university student

2011-12-17T22:00:00.001-05:00

From Variety. (Here's a story about Jacob Barnett from March 2011).

Warner Bros. has acquired feature film rights to Kristine Barnett's upcoming memoir, tentatively titled "Scattered Skills," in a pre-emptive deal.

Book will tell the story of a mother and her 12-year-old son, Jacob, (pictured) and his journey from autism to genius.

The son's first few years were spent in silence but then he took a liking to math and was able to recite the mathematical constant pi out to 70 digits at age 3. He began attending university classes in Indiana at age 8 and has a math IQ that has been measured at 170.

Deals for the book and film were based on a 74-page proposal.

Courtenay Valenti will oversee the project for the studio.

The book deal was negotiated by Susan Kamil, senior VP, publisher and editor in chief of Random House. The memoir is set to be one of the publishing house's major titles for 2013 and foreign rights have already been sold in 18 territories.

UTA negotiated on behalf of Barnett and her publishing agent Laurie Bernstein of Side by Side Literary Prods.

As Greece slashes costs, deaf people, disabled people left unaided

2011-12-17T21:05:00.000-05:00

From The AP:

ATHENS, Greece — Evanthia Plakoura’s life recently became a lot more complicated.

Conversations with her boss switched to email only. Visits to the doctor require additional planning. She feels helpless in Greece’s bureaucratic labyrinth.

“It’s like someone flicked a switch and turned off your voice,” said Plakoura, a deaf woman who works at the Education Ministry.

Plakoura joined some 2,000 disabled demonstrators at a rally in central Athens this week to protest sweeping benefit cuts imposed in Greece’s economic crisis that have deprived her of sign-language translation.

In August, a five-year-old program providing deaf people with interpreters was suspended after the government abruptly cut its funding to less than half. Overnight, 15,000 deaf people around Greece were left without help to report a crime to the police, rent a house or go to a job interview.

Funding cuts have opened up gaps across welfare services, with slashed services and longer waiting times for vulnerable groups including the blind, recovering organ-transplant patients, autistic children, and paraplegics in need of physiotherapy.

“This program is very important to us. It’s our bridge to the outside world and it’s vital for our education,” Plakoura said in sign language, her speech relayed by one of the very translators whose help is being cut off.

“People have gone back to writing things down, or taking a relative, but it’s not the same thing,” she said. “It makes things very difficult for us, and especially for elderly deaf people.”

The axed program is the latest casualty of Greece’s draconian austerity measures that have battered social services as demand for help by the recession-hit public increases.

Independent welfare programs that rely on grants from the state offer a tempting target to a government fighting the threat of bankruptcy. Unlike state-run programs, which enjoy strong legal protections, the government can simply turn off the money taps.

As a result, independent programs to assist the disabled, the elderly, psychiatric patients and recovering drug users have all suffered steep cuts, occasionally with dramatic consequences.

An alarming rise in HIV infections in 2011 has been blamed in part on problems with needle exchange programs for drug users. Between January and October this year, 190 new infections of the deadly virus were reported among intravenous drug users, compared with 14 in the first 10 months in 2010, according to the Health Ministry.

Groups representing the disabled and other vulnerable Greeks have held several demonstrations outside the Finance Ministry, on Athens’ main Syntagma Square, but getting attention is difficult in a city where between four and five protests are held every day.

At his suburban headquarters, Costas Gargalis, who heads the National Association of the Deaf in Greece, is struggling to keep his 60-member network of interpreters together, hoping to restart the program sometime next year.

“Since the program was suspended, it’s been really chaotic,” he said. “Some people can pay for interpreters on occasion, but others have simply postponed their tasks forever.”

Gargalis, who is deaf, spends his working day in hectic silence: swiftly thumbing text messages on his cell phone, poring over fax requests from around Greece, and making video calls over the Internet.

His interpreters program started with an annual state grant of euro250,000 ($333,200) in 2006; that was steadily reduced to euro180,000 ($240,000) this year, before being suddenly slashed to euro80,000 ($106,600) in August.

"We were immediately over-budget and had to suspend the program. And even then, interpreters were left unpaid for two months of work," said Gargalis.

At previous funding levels, deaf people were offered 25 hours a year with interpreters. If the program is restarted next year, they will receive no more than 10 hours, Gargalis said.

"The amount of money we are asking for is laughable," he said, speaking through an interpreter. "This is a matter of survival for us."

Interpreters for the deaf need six years of training to get their license, and are paid below-minimum wage to crisscross Greek cities daily and provide help communicating.

"People generally become interpreters because they are interested in the subject," registered interpreter Costas Christodoulakos said.

"Now they are obliged to look for other work and take on other commitments, often unrelated to their interpreting jobs," he said. "What else can they do?"

Greece's debt-shackled economy has been kept alive by international rescue loans for the past 19 months, and creditors are pressing for more aggressive spending cuts, as the Socialist government continues to miss deficit-cutting targets and heads into a fourth year of recession in 2012.

Finance Minister Evangelos Venizelos promised this week to submit protesters' demands to the country's new prime minister, and invite disabled groups to join negotiations on a major new tax code due to take effect next year.

Health care is facing major cuts this year -- down from euro7 billion originally planned to euro5.6 billion ($9.4 billion to $7.5 billion), excluding state insurance subsidies.

Since the debt crisis started in late 2009, store closures have exceeded 20 percent in some commercial parts of Athens, while more than 275,000 people have lost their jobs nationwide, the vast majority in the private sector, pushing the unemployment rate to more than 16 percent.

"The unemployment rate among disabled people is normally more than double the national average ... so there is an urgent need for disabled people to be protected (from the cuts)," Yiannis Vardakastanis, leader of the National Confederation of Disabled People, said in an interview.

"The effects of the initial (government spending) cuts were not immediately obvious. But the cuts being made now have brought parts of the care system to a state of near-collapse."

Disabled Western Michigan University student DJ's, paints murals, finishes college using mouth stick

2011-12-16T22:28:00.000-05:00

From The Kalamazoo Gazette:

KALAMAZOO, Mich. — Rynita McGuire (pictured) puts a new spin on the word “mouthy” as she mixes turntables and paints murals.

The 34-year-old, Kalamazoo-native completed a college degree entirely with her lips and teeth. She will receive her bachelor’s degree in painting from Western Michigan University on Saturday and every piece of art she’s created — whether it be on canvas, in headphones or on a computer screen — was made with her mouth.

McGuire was born with arthrogryposis, a condition that affects the tendons resulting in underdeveloped muscles, and has used a wheelchair for essentially her entire life. She orders straw-like devices called mouth sticks online for about $70 a pop and uses them to DJ and make graphic designs.

“I’m not paralyzed. I can use my hands but I have much more control with my mouth,” she said. “I lived my life like this. It’s not hard. If you push yourself all the time, things become natural.”

She said she has been using her mouth to do most things since she was a kid, so it was a no-brainer for her to grab a wooden spoon the first time she encountered DJ-mixing tables about a decade ago. Six months later, she was invited to perform at the Detroit Electronic Music Festival in 2002 and would continue to tour the country under the name DJ Short-e. She was one of three female artists asked to perform at the electronic music event, which is a male-dominated field, according to McGuire.

McGuire fell in love with art when she picked up a crayon, but didn’t seriously pursue it until college. She attended classes for graphic design and painting on and off at Kalamazoo Valley Community College but she wanted to get her bachelor’s degree. In 2009, she chose to focus on school at WMU because being a student and a traveling DJ was hard to multi-task.

“I think painting with my mouth was harder than learning to DJ,” she said. “Finishing school on my own was really intense. I didn’t think I was going make it a few times. Western can be a big scary place, even for me, and I’m not intimidated by a lot. I’m really proud I made it.”

McGuire’s independence is innate, according to her mother, Elizabeth Schmidt, of Kalamazoo.

“She doesn’t feel like she is handicapped. It’s the people who are doing nothing and have use of their arms who are handicapped,” Schmidt said. “She is able to pick herself up and keep going despite some really hard obstacles and it’s not like anything has been given to her. She’s done it on her own, even school.”

McGuire receives some state funding for her disability and was eligible for student services, but said it was more efficient to do her homework alone. She’s a project manager, has worked for WMU’s RSO Designs throughout college and lives on her own with two dogs.

McGuire suspects being older than her peers and in a wheelchair kept many of her classmates from getting to know her, but the fight to be acknowledged for her talents rather than disabilities is not a new one.

“Getting people to understand that I can do anything they can do and not to treat me like a kid is the challenge,” she said. “A lot of people treated me like I was a project. New people sometimes talk to me with high-pitch, slow voices or they ask my friends questions about me, but I don’t sit around and feel sorry for myself.”

She said she refused to DJ live until she spent thousands of hours practicing.

“I didn’t want people to think I was good for a girl in a wheelchair, I wanted people to think I was good.”

Even though she started drawing pictures and mixing cassettes for friends at 6 years old, she ignored encouragement to pursue art as a career until she attended college.

“I started out as a psychology major at WMU because I wanted people to take me seriously intellectually,” McGuire said. “I was dismissing a talent I had because I wanted to prove something.”

She’s since realized she can be taken seriously as a painter and musician because she is both of those.

After her educational sabbatical, DJ Short-E returned to the stage at Old Dog Tavern last month. It was the first time any of her peers heard her perform. Within minutes, the dance floor was filled as DJ Short-e pumped her neck to spit out beats.

McGuire is working to gather local painters and DJs in February for a graduation thesis paint show and is already booking shows in Michigan.

She hopes to either find a job teaching art or start her own graphic design firm in Kalamazoo.

“She’s inspired a lot of people and she has a long way to go; she’s young,” said Schmidt.

Florida charter schools failing to serve students with disabilities

2011-12-14T16:54:00.000-05:00

from StateImpact Florida:

Tres Whitlock (pictured) is stuck in a public school where he feels ignored. He wants out.

The 17-year-old would-be video game designer researched his options online and found his perfect match – Pivot Charter School.

“It’s computer-based and I think I will do better,” he says.

But when Whitlock tried to enroll the school he found a series of barriers in his way.

The reason? He has cerebral palsy, and the Whitlocks say school officials told them they don’t have anyone to take Whitlock to the bathroom.

Whitlock and his parents are convinced their story isn’t unique – and enrollment data backs them.

A StateImpact Florida/Miami Herald investigation shows most charter schools in Florida are failing to serve students with severe disabilities.

Statewide, 86 percent of charter schools do not have any students classified as severely disabled.

That’s despite state and federal laws that require charter schools to give equal access to these students.

Tres Whitlock’s father, Maurice, says the family tried to alleviate Pivot’s concerns. The family even offered to pay for physical and occupational therapy. Maurice Whitlock still feels burned by the experience.

“It’s not negative or rude, but every angle was trying to find a different way to say ‘no’ every single time we were in that office,” he said. “They were politely trying to say they didn’t want him there. Because that’s the easy way.”

Pivot principal Carmela David declined to talk about Tres Whitlock. She says her school has never turned away a student because they’re disabled.

“That has never happened,” she said.

Whitlock is still trying to get into Pivot. In the meantime, he’s been placed in a public school classroom that serves mainly students with mental disabilities.

It’s a doubly-bad situation for Whitlock. He doesn’t feel mentally challenged. But he’s also being ignored because he’s isn’t able to raise his hand quickly enough to be noticed.

Whitlock can’t control his vocal chords, so he communicates by typing his words into the DynaVox tablet that serves as his voice.

When he’s asked about Pivot, his eyes widen and he smiles. With a twisted hand, he painstakingly types out his answer.

The mechanical voice of the DynaVox can’t mask his emotion.

“I have very few friends,” Whitlock said. “I still want to go to Pivot.”
“They Cost Too Much”

Charter schools first developed as an alternative for parents unhappy with their neighborhood school. They are publicly-funded but privately-run. Charter schools are given the flexibility to try new ideas and hire the staff they want.

According to state law, every student is supposed to have an equal shot at enrollment – including students with disabilities. But students with severe disabilities are not appearing in most charter school classrooms.

StateImpact Florida and the Miami Herald gathered and analyzed data on K-12 students with disabilities from 14 school districts representing more than three-quarters of Florida’s total charter enrollment.

The analysis focused on students in the state’s two most severe disability categories, which includes some students with autism, Down syndrome, and cerebral palsy. It shows:

• More than 86 percent of the charter schools do not serve a single child with a severe disability – compared to more than half of district schools which do.

• In Duval County, just one student enrolled in a charter school has a severe disability. Duval district schools educate more than 1,000 severely-disabled students.

• There’s not a single child with a severe disability in charter schools in Pinellas County, the nation’s 24th-largest school district.

• The majority of charter school students with severe disabilities are concentrated in a handful of schools that specialize in those disabilities, often autism.

The Florida Department of Education, citing privacy concerns, declined to provide detailed statewide data of students with severe disabilities. But the agency said their analysis shows 86 percent of charter schools statewide had no students with severe disabilities.

It’s a trend repeated in California, Louisiana, New York and Texas, according to researchers from the Bill and Melinda Gates Foundation.

Harvard University researcher Thomas Hehir calls it a “pattern of exclusion” among charter schools nationally. Hehir was the top special education official during the Clinton Administration and played a leading role in rewriting the Individuals with Disabilities Education Act.

He says it comes down to money.

“That is unfortunately what we find in altogether too many places,” Hehir said. “I think that there is a disincentive to enroll these kids because they cost more money to educate.”

In Miami-Dade schools, for instance, state funding covers only 58 percent of the total cost of educating students with disabilities. The schools have to make up the difference.
The Loophole

This goes to the heart of the debate over charter schools. Opponents, especially teacher unions, argue that charter schools cherry pick students.

That’s something the CEO of one of the nation’s largest for-profit charter school chains flatly denied in a May interview with the St. Petersburg Times.

“We don’t cream kids,” said Jonathan Hage of Charter Schools USA. “It’s just not factually correct to say charter schools cream schools or take the best.”

“By the law we must have an open enrollment process. Anyone can apply. And the process when we have more applicants than seats is a lottery without preferences,” he said.

But for students with disabilities, there’s a loophole. Where special education students attend school is determined by their Individual Education Plan (IEP). That plan is developed by the student, parents and therapists.

The IEP team won’t send that student to a charter school that isn’t set up to serve disabled students.

Tres Whitlock.

It’s a catch-22, according to Paul O’Neill. He’s an expert in special education at Columbia University.

“When (students) get an IEP, it’s now a mandate, it’s a responsibility,” he said. “You’re not allowed to be any place that can’t implement that IEP. That isn’t an appropriate placement.”

Even in the traditional public schools, not every school is expected to provide every service. About half don’t serve a single child with a severe disability. Instead, they’re sent to neighboring schools with specialized programs.

“The reason that there are a larger percentage of charter schools without (severely disabled) students is that charter schools do not have the infrastructure and economies of scale to provide special programs to meet the needs of those children,” said Michael Kooi, director of school choice programs at the Florida Department of Education.

Kooi says school districts are supposed to design an overall plan to educate students with disabilities and avoid duplicating services.

“Charters as individual entities do not have this ability,” Kooi said.

Families of students with disabilities have another option if they are unhappy with public schools: The McKay Scholarship.

The McKay Scholarship provides tuition vouchers for students with disabilities to attend private schools. Students with disabilities who want out of their traditional public school may be opting for private school instead of charters.

About 22,000 students were enrolled in the program last year. McKay scholarships comprised as much as 10 percent of all students with disabilities, in districts which provided the data to StateImpact Florida.
Segregation?

Charter school officials said they recognize the problem and are working to correct it.

Lynn Norman-Teck, spokeswoman for the Florida Consortium of Public Charter Schools, said students with disabilities will become more of a priority as the charter school movement matures.

“I imagine that the children with disabilities will be next,” Norman-Teck said. “Unfortunately, just like they were an afterthought in the traditional public schools – not necessarily and afterthought, but it came with time. I think that will happen in time.

Hage, the charter school CEO, points to one possible solution: entire charter schools that specialize in serving kids with disabilities.

“We’re serving more and more students with special needs,” Hage said. “In fact, you’ll see more charter schools opening up for kids with autism, kids with severe disabilities.”

Orange County has a network of such charter schools. More than twice as many disabled students attend Orange County charters as any other county.

In fact, when you factor out charter schools specializing in students with disabilities, charter schools enroll even fewer students with severe disabilities. These non-specialized charters enroll disabled students at a rate seven times lower than district schools.

Those specialty charter schools are available only in the state’s largest counties. And even if a county does have a charter specializing in disabilities, it may be far away from the student.

Harvard University’s Hehir has another name for this trend: segregation. He says it violates the students’ civil rights.

“If we had similar patterns of exclusion of kids by gender or race, I think there would be much more outrage then there is on the part of government and on the part of people,” he said.
Not an Option

Tres Whitlock’s mother, Tonya Whitlock, says Pivot may be allowed to deny her son entrance. But she says it certainly is not fair.

“If federal funding is going to fund these charter schools then they should be equal,” she said. “They should have equal opportunity for every student to be able to get an education at that school.”

They believe Pivot would be better for Tres Whitlock in a number of ways. Pivot offers half-day classes, which deals with Whitlock’s physical fatigue.

One more example: Whitlock won’t have to raise his hand to get his teacher’s attention. At Pivot, he can just signal his interest through his computer.

When they met with school officials in August, Pivot asked for testing and wanted to discuss Tres’ education plan, Tonya Whitlock said.

The Whitlocks were willing to pay for some services themselves if it meant Tres could attend Pivot.

They tried to schedule a meeting between school officials and Whitlock’s special education team, the group that develops and implements his federally-required Individual Education Plan.

As the start of classes approached, the Whitlocks said Pivot school officials were slow to respond about to their meeting request. They decided to enroll Tres in a district school rather than miss school.

Whitlock was given the option to attend a nearby school with a program for students with physical disabilities.

But his younger brother went to their neighborhood school, Bloomingdale High. So he ended up in Bloomingdale’s program for students with autism.

They’re still aiming to get into Pivot.

Carmela David, Pivot’s principal, declined to discuss Whitlock’s specific case.

She says Pivot must work with Hillsborough County special education experts to determine if the school is the best fit. The decision belongs to the district, she said.

“Sometimes it’s not up to us,” David said. “We don’t always get to say ‘Yes, you can come;’ ‘No, you can’t come.’”

Pivot does not have any students classified in the state’s two most severe disability categories, according to Hillsborough County school records.

Tonya Whitlock feels her son is getting left behind in the meantime.

“They kind of get put in the corner and forgotten about in the public schools,” she said.

The Whitlocks are not happy with their choices.

Charter schools were designed for students seeking innovative methods and materials. They’re supposed to be an option for students and families who feel the traditional schools are not meeting their needs.

But Tonya Whitlock says it may not be an option for them.

“When you have a child with a disability, they tell you where you’re going to go, basically, and that’s it,” Tonya Whitlock said. “They are segregated… and you’re not allowed to go beyond those boundaries. So really we don’t have choices.”

In NY city, accessible cabs for disabled people or Gov. Cuomo says he will veto livery cab bill

2011-12-12T20:30:00.001-05:00

From the NY Daily News:

ALBANY, N.Y. — Gov. Cuomo will veto a bill to allow livery cabs to pick up street hails unless it is amended to require that every medallion in a new batch of yellow cabs be specifically for taxis accessible to the disabled, the Daily News has learned.

The bill — passed in June and backed by Mayor Bloomberg — would permit the 30,000 livery cars in the city to pick up passengers on the street, as opposed to just serving customers who call ahead for a ride.

The bill also calls for the Taxi and Limousine Commission to sell up to 1,500 new yellow cab medallions, with 569 of those cabs being accessible to disabled riders.

Cuomo has previously raised concerns about the need for more cabs accessible to the disabled, but the development is the first word that the governor is pushing an all-or-nothing position in talks with lawmakers, sources said.

There are currently 231 city cabs that are equipped to handle disabled passengers. In a civil court filing in October, Manhattan U.S. Attorney Preet Bharara’s office charged that the city is nowhere near complying with the federal Americans With Disabilities Act when it comes to taxis for the disabled.

Cuomo and legislative leaders are still hashing out other changes to the bill, which, if approved, could mean $1 billion in new revenue for the cash-strapped city, the sources said.

A legislative source said there shouldn’t be a problem meeting the governor’s demand. The source said a tentative deal is in place to increase the number of new yellow cab medallions to 2,000, with all of them being for cabs accessible to the disabled.

“I think we’ve gotten to the point where everyone agrees that all new yellow cab medallions be wheelchair accessible,” said Assemblyman Micah Kellner, a Manhattan Democrat who has pushed a bill for widespread accessibility.

There is also talk of significantly scaling back the number of livery cars. One legislative source said that power brokers are currently discussing a proposal to cut the number of livery-car permits to 17,000, with 2,000 of them being accessible to the disabled.

Bloomberg spokesman Mark Botnick wouldn’t discuss specifics of the talks, but said, “We are working collaboratively with the governor and the Legislature to reach a positive resolution.”

Clothing line, Downs Designs, creates T-shirts & jeans to meet needs of people with Down syndrome

2011-12-11T22:38:00.000-05:00

From CNN:

Karen Bowersox doesn’t sleep much these days. Launching any self-funded clothing line would be exhausting enough, but Bowersox’s company, Downs Designs, created an entirely different system of sizing.

Its T-shirts and jeans meet the needs of people with Down syndrome.

“If I didn’t feel so sure of where we’re headed, I would never do this and risk what we have,” Bowersox said from a hotel room in Xintang, China, where she had been working with a jeans manufacturer. “I feel like a pit bull, because people better step aside and just let me get this job done.”

Bowersox created her company in 2010 to deal with a mundane yet agonizing problem – off-the-rack clothing would not fit her granddaughter, Maggie, who has Down syndrome.

Down syndrome’s best-known symptoms are those of intellectual impairment and facial differences – eyes that slant upwards, small mouths, and small, flat noses. But individuals with Down syndrome also have physical traits that make it difficult to find clothing that fits appropriately.

The condition is associated with poor muscle tone, which can make some body parts, like bellies, seem droopy. People with Down syndrome also tend to have thicker limbs, a short, thick neck, and short stature. Their knees and elbows are at slightly different points on their legs and arms. An underactive thyroid is common, and that can cause weight gain. Additionally, many children and adults with Down syndrome are sensitive to tight or restrictive clothing, especially around the waist or neckline.

This can make wearing ordinary clothes uncomfortable, and there are safety risks in tripping over pant legs that are too long or that don’t bend properly at the knee.

Bowersox said most people underestimate the effect that having badly-fitting clothes can have on the perception – and self-esteem – of a person with Down syndrome.

“Their entire life, this is one of their biggest challenges, and people do not know that,” Bowersox said. “They are forced to wear ill-fitting clothes that make their difference look even more pronounced. When they put on a shirt that fits, it takes away that difference.”

Julie Cevallos, vice president of marketing at the National Down Syndrome Society, said she’s been following the company’s progress on Facebook. Her 3-year-old daughter has Down syndrome, and her favorite outfits are stretchy leggings and loose tunics forgiving to most body types. But she said she’s glad to see Bowersox’s company taking the initiative.

“It seems like she is really filling a need that I haven’t seen anyone else filling, so I think it’s great,” Cevallos said.

Downs Designs now sells a line of women’s long-sleeved T-shirts and four styles of women’s jeans. Children's jeans and T-shirts are going into production. The company’s designers have drawn up designs for long- and short-sleeved t-shirts, blouses, khakis, jeans and coordinates for toddlers, kids, teens and adults. Bowersox said they hope to have the men’s jeans ready to sell by February, and hopes to introduce other items, especially khakis, in 2012.

The shop is starting to attract devoted customers.

"I've been getting lots of orders for the women's jeans. I just had a woman order her fifth pair. She loves them," Bowersox said. "It brings me to my knees, when someone feels good about how they look."

Bowersox's devotion to that idea is why she keeps going, despite exhaustion, mangled pattern samples, and setback after setback. She's using her house and husband's business as collateral for money that keeps the business running.

“I can’t accomplish this fast enough. I want a complete line in my lifetime. I want suits. I want prom dresses,” Bowersox said. “They just want to look like every other kid.”

Merge Paralympics with Olympics, say 65% of disabled Britons

2011-12-11T22:35:00.000-05:00

From The Express in the UK:

Almost two-thirds of disabled people want the Paralympics scrapped and merged with the Olympics, a survey has shown.

Support for such a move is backed by 65% of disabled people and 62% of parents of disabled children, according to a poll for the charity Scope.

More than half of all Britons polled, including those without disabilities, said combining the Olympics and Paralympics would help disabled athletes to be taken more seriously and improve society's views about disabled people.

The poll, carried out by ComRes, also found that 42% of disabled people did not believe the Paralympics had a positive impact on public perceptions of disability.

And 20% believe the Games make disabled people appear second class, while 22% believe the event is patronising towards them.

Although 61% of the 386 disabled people polled think the Paralympics provide an opportunity, just 23% see it as empowering.

Disabled people were also more likely to view the Games as a waste of money, with 9% taking that view as opposed to 5% of the whole population.

The survey also found general apathy about the Games, with just 11% of Britons excited about the Paralympics.

Under a third of disabled people and 18% of the whole population plan to watch all or most of the events.

Alice Maynard, chairwoman of Scope, said: "Changing attitudes is about visibility and increased familiarity in everyday life.

"But if the only disabled people that get any profile out of the Games are Paralympians – and their feats of sporting success – then it is unlikely that the Games will do much to change people's perceptions of ordinary disabled people.

"The challenge for London 2012 is to make sure disabled people are involved not just on track and field but throughout the Games and the celebrations before and afterwards."

Tim Hollingsworth, chief executive officer of the British Paralympic Association, said: "No one disputes that the Paralympic Games has a crucial role to play in changing perceptions of disability.

"However, for Scope to suggest that it would be appropriate to scrap the competition now and combine it with the Olympics fails to appreciate its unique purpose, scale and power.

"The Paralympics is already the second largest sporting event in the world, and London will see it take another huge leap forward in terms of awareness and understanding.

"The brilliant success of ticket sales and the increase in media coverage indicates to me that, contrary to the survey's sample, there is a big public appetite for Paralympic sport."