Monday, January 30, 2012

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

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.

Sunday, January 29, 2012

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

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

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.”

Friday, January 27, 2012

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

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.

Thursday, January 26, 2012

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

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


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

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.

Wednesday, January 25, 2012

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

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

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."

Tuesday, January 24, 2012

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

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.


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

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.”

Monday, January 23, 2012

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

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

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.

Saturday, January 21, 2012

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

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

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

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."

Wednesday, January 18, 2012

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

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. (

- 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.

Tuesday, January 17, 2012

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

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 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 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

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

Monday, January 16, 2012

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

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

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.

Saturday, January 14, 2012

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

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 ( ). “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.”