Monday, December 30, 2013

New children’s book tells story of father of disability rights Ed Roberts


Ed Roberts was an active boy who loved playing football and baseball at the park across from his house. But in 1953, everything changed: He contracted polio and couldn’t even breathe on his own, much less walk or run. This new children’s book profiles the courageous young quadriplegic, who would go on to fight for his own rights and the rights of all people with disabilities – a legacy that continues today.

“Ed Roberts: Father of Disability Rights” delves into Roberts’ life, detailing his early days in an iron lung and learning his lessons via the phone, battling school officials about high school graduation and becoming the first person with significant disabilities to attend the University of California at Berkley. Inspired by the civil rights and liberation movements, Roberts fought for equality for people with disabilities. As director of California’s Department of Rehabilitation and sit-ins in San Francisco, he helped bring change that let people live more independent lives, paving the way for the Americans with Disabilities Act and other laws promoting equal access. The World Institute on Disability, which Roberts co-founded, helps people around the world.

An illustration symbolism guide details the meanings of symbol-rich drawings by Patrick Wm. Connally. The symbols -- unique to Roberts and the disability civil rights movement – portray information via their colorful graphics. For instance, the boy peeking out of the drawing on Page 23 represents Roberts’ son. Readers are invited to find other symbols in the book as well.

Author Diana Pastora Carson, who has a master’s degree in education, is an elementary teacher, disability rights advocate and a consultant and speaker who specializes in inclusion and diversity as it relates to disability. Her inspiration is the experiences of her brother, who grew up being misjudged and excluded. Carson has taught disability studies courses through the San Diego State University Foundation and served on the board of directors for Disability Rights California. Her other books include “Foundations for Ability Awareness” and “Ability Awareness in Action: Teaching Ability Awareness to Children and Youth.”

In addition to his art, illustrator Patrick Wm. Connally is a civil rights advocate, consultant on access and disability rights, a family caregiver and co-host and producer of a radio program featuring disability issues. He is founder and president of Disability Rights Enforcement Education Services and has served on government and nonprofit boards and committees such as Disability Rights California, World Institute on Disability, and Research and Training Center on Personal Assistance Services. His artwork has helped raise money for animal rescue projects and promoted world-class museum events.
For additional information, please visit

Melissa Shang, 10, petitions American Girl to name doll with disability 'Girl Of The Year'

From The Huffington Post:

A bright and adorable 10-year-old is petitioning the American Girl brand to name a doll with a disability as its 2015 "Girl of the Year" because "disabled girls are American girls too," she says.

Melissa Shang launched a petition on titled "American Girl: Release an American Girl with a disability." Melissa has Charcot-Marie-Tooth disease, which damages the peripheral nerves, causing muscle weakness and decreased muscle size, according to the Mayo Clinic. She uses a wheelchair.

Melissa has been a fan of the American Girl dolls since she was 7 years old. Her favorites are the "Girl of the Year" dolls, a special edition character that highlights an overarching theme for the year with a back story focusing on a modern-day issue. In the past, these dolls have promoted issues like community service and anti-bullying efforts.

But a doll with a disability has not yet been added to that list.

Melissa's petition says: "For once, I don’t want to be invisible or a side character that the main American Girl has to help: I want other girls to know what it’s like to be me, through a disabled American Girl’s story.

Disabled girls might be different from normal kids on the outside. They might sit in a wheelchair like I do, or have some other difficulty that other kids don’t have. However, we are the same as other girls on the inside, with the same thoughts and feelings. American Girls are supposed to represent all the girls that make up American history, past and present. That includes disabled girls."

American Girl, a subsidiary of Mattel, has made strides in bringing diversity to its products. Besides selling dolls with a variety of racial, ethnic and religious back stories, last year it introduced bald dolls to represent girls experiencing hair loss, and it began offering "Special Sparkle" accessories like a hearing aid and a guide dog.

“We have a long history of speaking to diversity and making girls feel good about themselves, and this is just another way we are expanding on the idea,” spokeswoman Julie Parks said at the time, according to ABC News.

Melissa's petition has received more than 300 signatures, but still needs more than 9,000 to reach its goal.

Saturday, December 28, 2013

‘Top Chef Canada’ and ‘MasterChef’ winners launch culinary TV series for visually impaired people

From Yahoo!:

"Top Chef Canada" winner Carl Heinrich and "MasterChef" winner Christine Ha are launching a new culinary series for the blind and visually impaired, and it's all happening in Canada, reports TV Guide Canada.

Called "Four Senses," the 13-episode series will air on the Canadian network Accessible Media Inc., and will tape in Toronto. Promising to "focus on the broader discussion on disabilities and how people are breaking stereotypes," something tells us that by creating this program in the first place, they're taking a step in the right direction.
Fans of "MasterChef" may remember that Ha is visually impaired herself, but more importantly, she won Season 3 of the series (which included a $250, 000 prize and a cookbook deal). That's why "Four Senses" will work to obliterate stereotypes: Ha and Heinrich will describe and demonstrate ways to prepare dishes, talk to visually impaired triathletes and actors with macular degeneration, and stress the importance of getting accessible books into libraries -- as well as the science behind our senses, so we can actually understand them.

Obviously, this is terrific not only for the blind and visually-impaired, but also for other viewers. A series like "Four Senses" can educate those who don't know what it's like to rely primarily on only four senses, and in turn, we can advocate for proper books and programs because we can better understand (and respect) the challenges faced by those who struggle with their vision.

From the description, "Four Senses" seems like a program that advocates strength, confidence, and embracing one's abilities -- which is necessary to winning both "Top Chef Canada" and "MasterChef," and thus makes Ha and Heinrich prime hosts and creators. And by opening the show up to athletes and actors, not only do Ha and Heinrich show that cooking is for anybody, but that one is hardly alone in dealing with visual impairment.

The only thing that would make it better? To broadcast on more networks than AMI. Here's hoping another Canadian network gets wise and takes advantage of this unique, important program.

Times Square lights up with disability message against assisted suicide

From The Christian Post:

ADAPT and Not Dead Yet launched a new messaging campaign which will be displayed on the New York City Times Square CBS Super Screen. The video message will be displayed once an hour, eighteen hours a day for three months.

The Super Screen is 26 ft wide and 20 feet high. You can find it under the CBS logo on 42nd St., between 7th and 8th Avenue. These messages are displayed in a ten second video and will run once an hour, 18 hours a day for the next three months.

The first message avows that life, with or without disabilities, is worth living. Many misguided individuals have promulgated so-called "assisted-suicide" and euthanasia laws throughout the world that discriminate against elderly and disabled people by creating a state supported path to death. An all too common belief that a person is better off dead than severely disabled has been enacted as public policy.

In Oregon, doctors report that people ask for assisted suicide because they feel like a burden on others, indicating that they may have even felt a duty to end their lives and relieve society of the "burden" of their existence. In addition, many individuals with newly acquired disabilities have been assisted to die before being provided an opportunity to experience all that life with a disability can offer. Not Dead Yet challenges the social message that we are "better dead than disabled" and that society is better off without us.

The second message asserts that the quality of our lives is greatly enhanced when we are allowed the liberty to live in our own homes and apartments, supported by attendants that we hire and direct. We view nursing homes as a type of segregation and incarceration that violate our civil rights, as affirmed in the Supreme Court's Olmstead decision.

The third message calls upon everyone-with or without disabilities-to join us in our historic battle for our civil rights. We are not helpless and we neither need nor want pity. We need equal access to jobs, businesses, places of entertainment, government offices and our own homes. Everyone may at any time join our ranks by acquiring a disability. Join us now and ensure that we will all have quality lives no matter what the future may hold.Not Dead Yet is a national, grassroots disability rights group that opposes legalization of assisted suicide and euthanasia as deadly forms of discrimination.

= = = =

Not Dead Yet is a national, grassroots disability rights group that opposes legalization of assisted suicide and euthanasia as deadly forms of discrimination.

ADAPT is a national grass-roots community that organizes disability rights activists to engage in nonviolent direct action, including civil disobedience, to assure the civil and human rights of people with disabilities to live in freedom.

'Breaking Bad' star RJ Mitte plans music career

From Star Pulse:

'Breaking Bad' star RJ Mitte wants to start a music career.

The 21-year-old actor - who played the character of lead actor Bryan Cranston's son, Walter Jr., in the recently concluded hit TV series - has aspirations to record some of his own songs and has been brushing up on his instrumental skills.

RJ - who has cerebral palsy - told BANG Showbiz: "I'm working on it right now, I'm learning guitar, I'm learning piano.

"I have a little bit of an issue, I have one good hand, the other hand is a little stiff and rigid, but I'm getting control over it.

"I love music, at one point I had close to half a million songs on a hard drive. My house is constantly being filled with music, every music, vinyl, everything. It's really brilliant."

Although RJ suffers from cerebral palsy (CP) - a condition which normally occurs before or during birth for a number of reasons, usually due to a lack of oxygen to the brain - through "tons of yoga" and exercise, he has the condition under control, and had to accentuate its characteristics for the series.

RJ - also known as Roy Frank Mitte - has previously said: "It took a little bit of convincing [to get the part], as at first Vince [Gilligan, show creator] thought I was actually too able-bodied.

"I can't tell you the last time I've gone to a doctor for my CP. I have it under control for the most part."

Friday, December 27, 2013

College sophomore making Cincinnati campus wheelchair-accessible

From USA Today:

CINCINNATI — Sara Whitestone (pictured) was frustrated and didn't mind if everybody knew it.

After the University of Cincinnati sophomore waited on a windy November day for a shuttle that would accommodate her wheelchair, she encountered a bus without a lift and a driver reluctant to help.

"Not okay UC! I don't want to keep hearing the same apologies!" Whitestone tweeted after pulling herself onto the bus.

Later, after wheeling into the Tangeman University Center, she was blunt about her plight.

"It's demoralizing," she said, "to have to depend on someone else."

In some ways, Whitestone seems like the average 19-year-old. She's majoring in biomedical sciences, takes some classes online and would like more time to go out on the weekends.

But she's also afflicted with a disease that some days keeps her unable to get out of bed. Even climbing onto a bus will keep her in pain all day.

So Whitestone has gone a step beyond simply dealing with her own circumstances. Since arriving here, she's made it her personal mission to improve accessibility to students with disabilities.

Called SaraSpins, the group she started has raised nearly $20,000 for motorized wheelchairs for at least one other student, and raised awareness on UC's main campus.

Whitestone struggles with daily tasks that most students take for granted, and sometimes that gets her down. She gives herself injections every day, and a nurse comes to her off-campus apartment once a week to inject more medicine.

"It's chronic pain. It's every day," she said. "Those days are really hard for me. If I wasn't in this chair, you wouldn't think there was anything wrong with me. That's why they call it the invisible illness."

Whitestone seems to crave normalcy, like a night out with friends or a seat in the regular student section at Nippert Stadium.

But she's also sacrificed some of her regular life for her cause, and that seems to be the way she wants it, said her mother, Jen Whitestone.

"I think most of us who aren't in wheelchairs assume that the world's accessible," Jen Whitestone said. "Sara feels it's her job now to let people know that it isn't.

"Her father and I tell her, 'Don't forget about your classes.' But we also see she feels she has this social obligation, and we get that. It's who she is."

Whitestone wasn't always in a wheelchair. She has played flute and piccolo with the Dayton Philharmonic Youth Orchestra and ran the Flying Pig half-marathon in 2010.

But in late November of that year – Nov. 24, to be exact – she missed school with a headache. She thought she had an inner-ear infection.

She eventually was diagnosed with myalgic encephalomyelitis, or ME, sometimes called chronic fatigue syndrome.

One of the symptoms is POTS, a debilitating auto-immune disease that eventually left Whitestone dependent on a wheelchair.

She was hospitalized a couple of weeks later, and Christmas 2010 was, she recalls, "probably the sickest I've ever been."

Her parents tried to get her to face the reality that she wouldn't go to college, at least not right away. She was essentially home-bound for a year.

She got herself to UC, an accomplishment she calls "a miracle."

But she soon realized that getting around campus was harder than she had anticipated. Riding her wheelchair down the campus' Main Street, the chair bounced over all the bricks, and Whitestone has to go through three sets of doors, take an elevator and out-of-the-way ramp to traverse about 50 yards to the western edge of Nippert Stadium.

"I think it's accessible, but it's certainly not equal opportunity and it's certainly not inclusive," Whitestone said. "Every time a friend walks with me to class, they're like, 'Where are you going?' The heart of main campus doesn't even seem welcoming to me. Like the labs ... I can't reach the sinks. I can't reach the glasses. I can't reach anything."

Whitestone is one of fewer than 10 students on main campus who have registered for disability services with a wheelchair.

"I do understand that I'm one person out of 43,000 students," she said. "But there's a reason there are so few of us."

Whitestone and SaraSpins have become ubiquitous at UC, appearing before the Board of Trustees and organizing a "UC Wheels" event when close to 70 students rode around campus on wheelchairs to see for themselves. She even was grand marshal of this fall's Main Street Stride, an annual fall event.

Whitestone has done several of those trips with UC architects and other officials, searching for ways to make it easier for those who use a wheelchair.

One example: a smooth-pavement path on the campus' Main Street.

"She's an inspiration," said Abbey Hunter of Jeffersonville, Ind., a sophomore who also has suffered from POTS and used a wheelchair provided by the group last year. Intensive therapy has her able to walk on her own this year.

"Everybody knows her," Hunter said. "She's a Twitter ninja. She's pretty ill and she's trucking along."

Hunter met Whitestone on her first day at UC. She said the normal three- to four-minute walk from the center of campus to the DAAP building, where she takes most of her classes, will take 12-13 minutes.
"It takes a lot of energy just to plan where you want to go," Hunter said. "Definitely, getting around is frustrating."

Student body president Joe Blizzard spent a half-day in a manual wheelchair during the UC Wheels event this fall. He had never noticed, for example, that some bathrooms in Tangeman require you to go through three separate doors.

"You've got to take some time and plan where you're going," Blizzard said. "Main Street was difficult. And my arms are pretty sore."

Whitestone says just that awareness will help.

"I feel like students and faculty are listening. I'm starting to make a difference," she said. "I hope by the time I leave UC there are structural changes to campus."

Mike Southern, director of UC's Office of Disability Services, met Whitestone during her first semester. He acknowledges that Main Street could be more accessible to wheelchairs.

The disability services office services about 500 students who are dealing with issues ranging from learning disabilities to mental health problems to serious injuries.

"We try our best to be accessible, but I think Sara has brought the understanding that we can do better," he said. "She will do some great things in her life. I have no doubt about that."

Pursuing those changes may have left some scars, but she is determined to keep working.

"People aren't mean, they're just ignorant," she said. "They can be extremely disrespectful. People ask, 'What's wrong with you?' I feel like I'm supposed to represent everybody in a wheelchair, and I am constantly having to prove that I'm OK. All the time." 

Whitestone is a little uncertain about her own future.

"I really want to go to medical school," she said. "Realistically, I have to prepare myself that I'm not going to be able to do that."

She took two online classes this fall and will depend on them even more next semester.

Thursday, December 26, 2013

Remembering 'Beyond Ramps: Disability at the end of the Social Contract' author Marta Russell

From Canadian professor Ravi Malhotra, who is a member of the Human Rights Committee of the Council of Canadians with Disabilities and co-authored an article with Marta Russell in Socialist Register in 2001.This appeared in New Politics:

Marta Russell died a few days ago in Los Angeles days short of her sixty-second birthday. A journalist and commentator about issues affecting disabled people as well as a film industry worker for many years, Russell was best known for her landmark and pioneering book, Beyond Ramps: Disability at the end of the Social Contract (Common Courage Press). Here she set out a compelling critique of how capitalism marginalizes and oppresses disabled workers. 
Reading it as a young disability rights advocate, I found Marta's book a breath of fresh air, combining passionate advocacy with an understanding of political economy and an account of how disabled people are systematically oppressed by capitalism.
Marta was particularly unique in focusing on an anti-capitalist critique of disablement policy in the United States where postmodern analysis of the disabled body has predominated. With Jean Stewart, she wrote a remarkably biting piece about prisons and disablement for Monthly Review
She was also not shy about criticizing misguided strategies by disability rights movements that she felt were too moderate or co-opted. 
Disabled since birth, Marta leaves behind a daughter, Georgia Scheele, her partner, Steve Weiss, and countless disabled people she radicalized around the world. Advocates of socialism from below would do well to revisit her work on this too often ignored topic.
Here is a list of Russell's publications from her LinkedIn page
Her book - Beyond Ramps, Disability at the End of the Social Contract - was published in 1998 by Common Courage Press (Honorable Mention from Gustavus Myers Program for the Study of Bigotry and Human Rights in North America at Boston University).

Essays, articles include (but not limited to):

"Backlash, the Political Economy and Structural Exclusion." In Linda Krieger (ed), Backlash Against the Americans with Disabilities Act: U of Michigan Press (2003).

"Capitalism and Disability." Leo Panitch & Colin Leys (eds) A World of Contradictions: Socialist Register, 2002.
"The Political Economy of Disablement." Real World Micro 2001, Marc Breslow, Ellen Frank, Cynthia Peters the Dollars & Sense Collective (eds) Cambridge MA.

"Targeting Disability." Monthly Review, 2005.

"What Disability Civil Rights Cannot Do: Employment and Political Economy." Disability & Society, 2002. 
"Disablement, Oppression, and the Political Economy." Journal of Disability Policy Studies, 2001.

"Disablement, Prison, and Historical Segregation." Monthly Review, 2001.

"The New Reserve Army of Labor?" Review of Radical Political Economics, 2001.

"Backlash, the Political Economy and Structural Exclusion." Berkeley Journal of Employment and Labor Law 2001.

“Being Disabled and Poor in New Orleans,” ZNet, September 2005.

“The Social Movement Left Out,” ZNet, August 2002.

“Supremely Insensitive: the High Court’s Decision to Side With Business On the ADA”, March 2002.

“Work Ought to Mean Getting Ahead,” Los Angeles Times, July 1994.

“Productive Bodies and the Market,” Left Business Observer, ed Doug Henwood, November 1999.

“Wheeling Through Mr. Bill’s Neighborhood,” The Disability Rag & Resource, November 1994.

Sunday, December 22, 2013

In Japan. filmmaker captures the 3/11 stress of Tohoku’s deaf community after tsunami

From Japan Times:

Nobuko Kikuchi (pictured), a 72-year-old resident of Iwanuma, Miyagi Prefecture, couldn’t hear the emergency sirens that followed the 9.0-magnitude earthquake that struck on March 11, 2011.

Nor could she hear the public announcement urging people to evacuate to higher ground as a massive tsunami approached the coast of northeastern Japan’s Tohoku region.

Kikuchi is deaf. She owes her life to a neighbor who came to alert her. Kikuchi narrowly escaped the monster wave, which uprooted and washed away her house.

In another part of the city, a deaf couple who ran a beauty salon survived — though nobody came knocking on their door. After the quake, they smelled a “strange odor” and ran up to the second floor of their house. But after the tsunami swept through their house, destroying all the equipment in their salon on the first floor, the couple spent a lonely night alone. They had no information about the scale of the disaster or where they could go to get help.

Such horrific experiences of the Great East Japan Earthquake fill “3.11 Without Sound — There Were Deaf People in the Disaster Area, Too,” a 23-minute documentary recently released by deaf filmmaker Ayako Imamura.

Nagoya-based Imamura, 33, has made seven visits to Miyagi, Fukushima and Iwate prefectures since the disaster, meeting and interviewing victims there.

Her film is a bitter reminder of how people with disabilities are neglected during disasters and denied access to the kind of information that can literally mean the difference between life and death.

Statistics on the number of deaf and hearing-impaired people affected by the disaster are hard to come by. The Health, Labor and Welfare Ministry, which has a department serving people with disabilities, will only say that as of May 2011, 14 deaf and hard-of-hearing people in Miyagi Prefecture were killed by the tsunami/quake. A total of 736 others were confirmed to have survived. The ministry has no data for such casualties in Iwate and Fukushima prefectures.

In the film, Imamura cites a report by public broadcaster NHK that puts the number of fatalities among deaf and hard-of-hearing people in the three prefectures at 75.

Imamura, who has shot numerous documentaries on Japan’s deaf community, met and interviewed several deaf and hearing-impaired people in Tohoku, including Kikuchi, who the film focuses on.

In an interview filmed in an evacuation shelter one month after the disaster, Kikuchi breaks down as she explains she can’t hear any of the announcements on food rationing and other assistance — no one has thought to take her special needs into consideration.

She and her husband, Tokichi (who is also deaf), had no other way of keeping track of new developments than by watching hearing evacuees.

“If they see other people lining up, they would follow suit, assuming some aid item would be handed out,” Imamura says in the film. “It’s a huge form of stress for her, and she has no time to relax all day.”

Kikuchi regains some semblance of normalcy over time. She looks much better in August 2011, when Imamura visits her at an apartment-style temporary housing facility, into which the couple moved that May. 
Nicely coiffed and made-up, Kikuchi smiles as she teaches her granddaughter how to make key chains with colorful plastic beads. The temporary dwelling has the basic necessities — a TV set, air-conditioning and a yellow light to let the couple know when they have visitors. But then a hearing film crew member notices that a fishmonger has just passed — without bothering to tell the Kikuchis.

Imamura visits her again on Dec. 25, 2011. Kikuchi looks pleasantly surprised, showing off many donated sweaters that she was given at a Christmas charity event. But her expression clouds again — conveying to the filmmaker through sign language her feelings of insecurity about her future. Kikuchi says she doesn’t know how much longer the situation will continue. She tells Imamura she is alone now, because Tokichi was hospitalized the previous month.

Now that she’s finished the movie, which is subtitled in English, Korean and Portuguese, Imamura says everyone living in Japan should have equal access to vital information, regardless of disability or nationality. Tsunami warnings should be sent to all mobile phone users, she says, using handsets’ vibration setting to send emergency alerts to both deaf and blind people. Imamura says all public announcements should be made in simple Japanese and in various languages.

“There are many people in society — hearing people, hard-of-hearing people, blind people, people in wheelchairs and foreigners,” Imamura says in an email. “The message I want to get across in all of my films is that a society where all these people are able to live the life they want to live is a very rich one.”

Thursday, December 19, 2013

Barred from college entrance exams, in blow for China’s blind people

From The NY Times:

Li Jinsheng wanted to study law. But because he is blind, virtually the only profession he could train for in China was massage. So he did that and set up a massage business in Queshan County, Henan Province.

Now 45, Mr. Li never gave up on his dream. On Dec. 10 he applied to take the national college entrance examination, like millions of others, only to be turned down by local education department officials. With the registration deadline having expired on Wednesday his hopes are over for this year, he said on the telephone. “They said they didn’t have examination papers for blind people,” he said.

China’s blind population is deeply frustrated by being shunted off into just two professions — massage and music, as The New York Times reported recently. They have long campaigned to be allowed to take part in the “gaokao,” or regular college entrance examinations, and thereby gain access to mainstream universities.

While the law does not say they cannot take the “gaokao,” in practice applications by the blind are routinely turned down, said the lawyer Huang Rui of the Boyang Law Firm, who is himself disabled. It’s part of what activists say is routine discrimination that is keeping blind people and others with disabilities poorer than their able-bodied counterparts.

“The law doesn’t say blind people can’t take the examination, but they’ve never been willing to let them,” said Mr. Huang, who has “a disability of the limbs,” he said by telephone from Henan.

Reached by telephone, officials in Queshan County’s education department declined to comment.

Around the world, one in 10 people have some form of physical or mental disability, making disabled people the world’s largest minority, according to the United Nations. China says it has 85 million disabled people, or about 6.5 percent of the population. It has both signed and ratified the United Nations Convention on the Rights of Persons With Disabilities, which assures them full rights to education.

In China, as elsewhere, disabled people are on average poorer than their able-bodied peers, having a disposable income of around half the national average, according to officials.

Mr. Li knows it may be too late for him to ever study the law at college, but he plans to keep trying to take the entrance examinations in order to highlight the issue, and in the hope that it will work for him one day, too.

“I can’t accept this situation,” he said. “I’m very hurt. It’s hard to be blind, and then to not let me take part in the examinations. I want to sue them.”

Mr. Huang also mentioned the possibility of a lawsuit.

Mr. Li was anxious to emphasize: “If they let me take the examination, I will be really, really grateful to the authorities. Deeply grateful. It will have been really good of them. Please write that.”

And if not? “It’s illegal!” he said.

Wednesday, December 18, 2013

'Glee' adds Oscar winner Marlee Matlin for Nationals episode

From The Hollywood Reporter:

Glee's Nationals episode is starting to take shape.
After booking Pitch Perfect star Skylar Astin to compete with New Directions, the Fox musical has added a judge for the competition.

Oscar winner Marlee Matlin (Children of a Lesser God) has boarded Glee as a judge, guest starring in a March episode, The Hollywood Reporter has confirmed.

Matlin, who co-stars on ABC Family's Switched at Birth, first teased her role with Glee on Twitter, posting that she was spending the next few days filming the musical dramedy and sharing a photo (above) with Astin (Jean-Baptise), Darren Criss (Blaine) and Chord Overstreet (Sam).

Matlin, who will play herself, becomes the latest actor to appear as a judge on the Fox series, joining Lindsay Lohan, Perez Hilton, Kathy Griffin and Loretta Devine. Additional judges are expected to be announced.

Glee returns on its new night and time Feb. 25 on Fox.

Tuesday, December 17, 2013

Disabled pig, Chris P. Bacon, pens kids’ book about acceptance

From AMSVANS. Here's a video preview of his book.

The fabled, disabled pig, Chris P. Bacon, has become not only an Internet darling and an inspiration to children with disabilities—now, he’s published his autobiography! It’s new children’s book about the importance of acceptance.

Chris, who was born with severely deformed back legs that are permanently locked in a “flex” position, was given a new lease on life when he was brought to the office of veterinarian Dr. Len Lucero just a day after being born. When an animal so severely deformed is brought in, the normal course of action is to euthanize. But Lucero couldn’t bring himself to put the little guy down—he saw something special in the animal.

“He was so full of life,” Dr. Lucero says. “So I thought, there’s no way I could put this thing down. I’d rather give him a fighting chance, at least if not at my home, I would find someplace for him.”

First, however, Dr. Lucero had to give Chris the gift of mobility. He achieved this through building a set of prosthetics for Chris out of K’nex blocks—a children’s toy that allowed him to fashion wheels to replace Chris’s back legs.

Perhaps not surprisingly, Dr. Lucero did end up adopting Chris, and the piglet has adapted well to his rolling prosthetic—a pig-perfect wheelchair. As Chris has grown, small wheels have been replace by larger ones, but to this day Chris P. Bacon bounds happily around Dr. Lucero’s farm in his special wheelchair.

Chris has had to overcome more than just the issue with his back legs; in June Chris underwent an operation for a hernia. The procedure is not uncommon for Chris’s breed, and according to Dr. Lucero, the hardest part was keeping Chris from eating the day before the surgery.

“Fasting a pig is a challenge,” said Dr. Lucero.

On top of the 90,500 “likes” the pig has on Facebook and the tens of thousands of viewings his videos have had online, Chris has just released his very first children’s book. Entitled Chris P. Bacon: My Life So Far, the book’s message is one of acceptance as well as compassion and empathy for other peoples’ imperfections. The book is targeted at children ages 4 to 10 years of age, and as further testament to the book’s intent, for each book purchased, another will be donated to three charities—St. Jude’s Children’s Research Hospital, The Children’s Aid Society, and Read to Grow.

The book is the first in a three-book deal that has been offered by Hay House, the world’s largest self-help and motivational publisher. Here are a couple of videos to put a smile on your face—the first clearly show’s Chris’s need for speed in his wheelchair, and the second video reminds us he gets around pretty well without it, too! So cute! No word about book signings yet. We’d love to hear your reviews when you’ve read the book—is it destined to be a blockbuster movie?

Saturday, December 14, 2013

Boston Globe coverage of the art project to change the wheelchair accessibility icon

From The Boston Globe:

It started as a guerrilla street art project in Cambridge aimed at beginning a conversation. Then it quickly became something else, a grass-roots movement that spread quickly, because it requires no language and no explaining. You just have to consider two very similar images.

One image is the wheelchair symbol, which has become one of the most familiar icons in the world since it was introduced in 1968. The other is an edited version, with the human distinct from the chair, in an active position, with a feeling of forward movement.

In the three years since Sara Hendren, a Cambridge artist and writer who teaches at the Rhode Island School of Design, and Brian Glenney, an assistant professor of philosophy at Gordon College, began placing their version over the existing one, the Accessible Icon Project has gone from an artistic statement to a global movement.

Today, the symbol has been adopted by institutions as varied as the Jacksonville Jaguars of the NFL, the city of New York, and the Boys and Girls Club in South Boston. Recently, the Museum of Modern Art accepted the image into its permanent collection.

“It’s amazing how many people have discovered this project and then rallied behind it,” Hendren said. “People write to us from all over the world, and they say ‘I know exactly what you’re doing. You don’t even need to explain it.’ ”

The original goal of the project was to begin a dialogue about the way society views disability. They felt the old symbol was stiff, robotic, with the chair functioning as a part of, not a tool for, the human. The original icon was just a wheelchair until a later designer added a head in the form of a dot on the top of the chair back.

Hendren and Glenney call each other co-instigators, but their goal was never to instigate a movement. Others had already tried that, including a 1994 image by Brendan Murphy that was the inspiration for Hendren.

But so many have been adopting their symbol that they’ve begun the process of going through official channels to ask that their image be formally accepted as an alternative to the original. No one would be required to change current signs under their request.

Backers submitted a request to the Massachusetts Architectural Access Board, and it is there that the movement hit its first stumbling block. After months in subcommittee, the project received word through its attorney that the board is concerned about a financial conflict of interest.

Hendren and Glenney had gifted the commercial rights for the icon to Triangle, Inc., a Malden nonprofit group that has been working to empower individuals with disabilities since 1971. But the state expressed concern that the new icon could be a money-making venture for Triangle.

Triangle says that’s not their intention. They sell stickers and parking stencils on their website, but also provide free templates so that people can make their own, said Jeff Gentry, the senior director of community partnerships and program development at Triangle.

Terrel Harris, the communications director for the state’s Executive Office of Public Safety and Security, which oversees the board considering the new icon, refused to comment on the matter while it is in subcommittee.

For those involved in the Accessible Icon Project, they consider the stall at the state level to be a minor speed bump. There are many, like Hendren, who think that the idea’s real power still lies outside official channels. “You have to hang out in that space of provocation where you show rather than tell,” said Hendren, “where you don’t summarily deliver a solution. I’m interested in a whole constellation of questions that start with the symbol but don’t end there.”

Instead, advocates prefer to focus on the organic movement that has already led so many to adopt the icon, from a hospital in India to UMass-Amherst to the city of Malden, where Mayor Gary Christenson has committed to transitioning the city to the new icon, regardless of what the state says.

They point to the story of Brendon Hildreth, a 23-year-old from Reading who has cerebral palsy and hearing loss and uses a communication device. Hildreth had been volunteering at Triangle, but recently moved with his family to New Bern, N.C., so he could pursue his dream and attend community college. And there, he has become a one-man ambassador for the icon, using a Power Point presentation to single-handedly convince restaurants, institutions and entire towns to adopt the new symbol.

“He believes in the message of it,” said his mother, Darcy. “For him, it says ‘The disability is not a part of me. I have a disability. The disability doesn’t have me.’”

For his mother, she said that simple act of making the icon active rather than passive exemplifies the message she and her husband have long tried to instill in their son. “We’ve always told him, ‘Brendon, I’m sorry that your muscles don’t work, but that doesn’t excuse you. You have other abilities.’ And that’s what this symbol represents. Moving forward. Not letting a disability stop you.”

Friday, December 13, 2013

Bill Porter, exceptional salesman with CP who inspired TNT's 'Door to Door,' dies at 81

From The NY Times:

Bill Porter, an Oregon door-to-door salesman who plied his trade for decades despite having severe cerebral palsy, and whose story inspired an Emmy-winning television film starring William H. Macy, died last Tuesday in Gresham, Ore. He was 81. 

The cause was an infection, said Shelly Brady, his longtime assistant. 

From 1962 until his death, Mr. Porter was a salesman for J. R. Watkins, a Minnesota purveyor of grocery, household and personal-care products. The telefilm of his life, “Door to Door,” was broadcast on TNT in 2002 to favorable notices. 

The successful door-to-door salesman must be skilled at driving, walking and talking. Mr. Porter did the first of these not at all and the latter two only with great difficulty. But through a combination of persistence, gregariousness and charm, he was for many years Watkins’s top salesman in the region comprising Oregon, Washington, California and Idaho. 

Mr. Porter came to wide attention in 1995, when he was the subject of an article in The Oregonian, the Portland newspaper. A profile on the ABC newsmagazine “20/20” soon followed, and Mr. Macy, who saw it, was moved to start work on a biographical screenplay. 

“Door to Door,” which also starred Helen Mirren as Mr. Porter’s mother and Kyra Sedgwick as Ms. Brady, won six Emmys. They included an acting award for Mr. Macy; a screenwriting award for Mr. Macy and his co-writer, Steven Schachter; and the award for outstanding made-for-television movie. 

Mr. Porter was the subject of a best-selling inspirational book by Ms. Brady, “Ten Things I Learned From Bill Porter” (2002), and later toured with her as a motivational speaker. 

William Douglas Porter was born in San Francisco on Sept. 9, 1932, to Ernest and Irene Porter; a birth injury left him with cerebral palsy. When he was a youth, the family settled in Portland, where Ernest Porter sold signs to local businesses. 

After graduating from high school, Bill Porter, seeking work, was deemed unemployable by the state. The state offered him disability benefits. Mr. Porter declined. 

Encouraged by his mother to pursue a sales career, he applied to the Fuller Brush Company but was turned away. The Watkins company turned him away, too, until Mr. Porter, in his first successful pitch, persuaded them to give him their most inhospitable territory in Portland. 

He covered it by foot, taking the bus as close as he could get before disembarking to walk his route — eight to 10 miles daily. He had the use of only one hand; in it he carried a briefcase filled with pictures of his products. A traditional sample case would have been too heavy. 

Working on commission, he braved all weather and a spate of slammed doors. Little by little, the orders came, for soap and spices and dog biscuits. When the products arrived, his mother delivered them by car; in later years, when she could no longer manage the task, Mr. Porter hired Ms. Brady. 

In his best weeks, Ms. Brady said, Mr. Porter might earn $300 or $400. In 1997, after being hit by a car while headed out to his rounds, he sold his wares by telephone. 

Mr. Porter, a longtime resident of Gresham, near Portland, leaves no immediate survivors. He had long considered Ms. Brady, her husband, their six children and six grandchildren as family. 

Ms. Brady, who had worked for Mr. Porter since 1980, witnessed a sterling example of his sales prowess in the late 1990s. They were trying to fly to a speaking engagement in Canada: lacking a photo ID, Mr. Porter was barred from boarding. 

Anxious to make the next flight, they drove to Mr. Porter’s home, unearthed his baptismal certificate and raced to the Department of Motor Vehicles. A helpful clerk, who recognized Mr. Porter from local news coverage, fast-tracked his application for a nondriver ID. 

In a matter of minutes, Ms. Brady recalled on Monday, Mr. Porter obtained his ID card and also sold the clerk a large tin of cinnamon.

Thursday, December 12, 2013

Is South Africa’s ‘fake’ sign language interpreter a legacy of apartheid?

From The Washington Post:

Sign language interpreters and deaf advocates have accused the interpreter at Nelson Mandela’s memorial service of being a “fake” -- an egregious mistake if true, but also a glimpse into another, lesser-seen consequence of apartheid.

The interpreter, who still hasn’t yet been identified, made few facial expressions during Mandela’s service and appeared to gesture more or less at random. Facial expressions can be a key part of signing speeches, since they convey emotion that hand signals do not. And four sign language experts told the Associated Press that the man’s hand movements were “gibberish,” part of neither American nor South African sign language.

That’s a huge embarrassment for South Africa -- particularly considering the country’s racially charged history with signing. As late as the 1980s, South Africa employed different sign languages for whites and blacks, making it next to impossible for deaf blacks to get jobs or educations.

Apartheid-era disenfranchisement was also worse for people with disabilities. The Rev. Cyril Axelrod, a Catholic priest who lobbied for change in the deaf community and was profiled by the Post in 1982, once came upon a group of 170 black deaf children, some as old as 15, who couldn’t read, write or sign as a result of discriminatory education policies.

Since the mid-1990s, South Africa has adopted one sign language, SASL, and a set of educational policies that encourage it to be taught in schools. But interestingly, the new language is still in the process of being codified, which means there’s no single, standard form -- and according to the Deaf Federation of South Africa, not all language schools there use it. In fact, in 2008 there were only six professional, accredited SASL interpreters in the entire country, a situation that University of Cape Town researcher Marion Heap, writing in the Cape Times, called an “urgent” public health risk.

Of course, none of this makes the interpreter at Mandela’s memorial any less offensive, if he was indeed just pretending to sign. But it’s probably safe to say that South Africa’s relationship with its deaf community is historically complex -- much more complex than the “fake interpreter!” headlines would make it appear.

Wednesday, December 11, 2013

VICE magazine profiles hip-hop group Wheelchair Sports Camp

From VICE magazine:

Kalyn Heffernan (pictured) is 42 inches tall, has been diagnosed with a brittle bone disease, is confined to a wheelchair, smokes lots of weed, and won’t hesitate to publicly shame anyone who gets on her bad side with a brutal rap track. Kalyn is the emcee and driving force of Denver’s Wheelchair Sports Camp, a hip-hop group that mixes classic beats with jazz and avant-garde sound experiments. The group formed while Kalyn was in college, with just her rapping and a DJ supplying the beats, but has evolved into a shifting lineup that sometimes features drums, a saxophone, and even a sitar.

Her music deals with social inequalities relating to handicap people, as well as getting blazed as fuck and how much cops suck. On her song, “This Bitch…” Kalyn attacks problems with healthcare, and on “Party Song” she taunts, “rock, let the midget hit it/cops on my jock, make ‘em, cough/cus I’m sicker with it.” More recently, she’s started to make beats for rapping Haitians who were displaced by the 2010 earthquake, and called out Goodwill for paying handicap people less than minimum wage.

VICE: Hello, Kalyn. What is your writing process?
Kalyn: I’m a pretty slow writer. Sometimes I write faster, but more than not I have to sit down... well, I’m always sitting down, but I just have to go at it.

You used to sneak backstage at shows and meet people like Xzibit, Ludacris, Erykah Badu, and Busta Rhymes. How did you do it?
It was pretty easy. I would play the wheelchair card and say “oh, so and so” told me to come back here. I was a pretty good scam artist back then. I think, because of my disability and because of my advantages, that I’ve been able to milk the sysem. I could get backstage to almost any concert.

Were the artists friendly?
Actually, Xzibit is a really cool guy. Erykha Badu was cool. There are few people who have been dickeads. Now I’m kind of bummed that I didn’t sit through concerts instead of being more concerned with sneaking backstage.

Who were the dicks?
Busta Rhymes was a dickhead. He was just rude. Maybe he had a bad show, but that’s really been the only guy who was not a very nice person. Shit, I think even Kanye was cooler than Busta Rhymes.

So Kanye was cool?
I think I rapped for him and hoped to get signed. He was real nice and introduced me to his manger. He wasn’t a jerk by any means. Erykah Badu went out of her way to be nice—so did Cee Lo and Eminem.

How much do you want the audience to focus on the fact that you are disabled when you perform?
I think that’s up to every person. I didn’t get into hip-hop to be a disabled rapper; I got into hip-hop because it's my thing. The name "Wheelchair Sports Camp" was definitely sarcastic, but also kind of marketed on the fact that I’m totally comfortable in my wheelchair. Still, I don’t want to be like, “oh, first cripple rapper right here!” or, “best short rapper!” Hip-hop is a bigger focus for me.

Have you ever faced any adversity in the music scene because of your needs?
No, I’m pretty lucky. I have a lot of support in Denver. I have always been pretty well supported by good people. I’m not really a shy person, so I wouldn’t allow myself to be treated too differently.

How did you almost get arrested in Denton, Texas?
It was our first big, out of state trip. We played a great show and had a really great time. There were actual graffiti artists traveling with us and also some wannabes, like us. A lot of us are kind of interested in graffiti, but we aren’t good. A few of us went tagging after the show and the person we were staying with, his roommate called the cops on us.

Half of the crew was in the apartment with the person who called the cops and the other half was causing a little scene. We bounced and got pulled over and went to jail. I didn’t. I got a ticket. The cops acted like, “Don’t think you won’t get arrested because you’re in a wheelchair,” and then I didn’t get arrested because I was in a wheelchair.

Why did the guy rat you out?
I don’t know. He didn’t agree with what we were doing.

How did you get involved with producing music for homeless Haitians?
A good friend of mine is a professor and a local musician. After the earthquake happened, his band and mine played a benefit show. He went to Haiti soon after to help with sustainability. He realized that the infrastructure wasn’t even ready for that and that everyone in the tent city was rapping. He brought a guitar and would play it and everyone would rap over it. He went back with recording material, some of my beats, and some stock instrumentals, and he brought back hundreds of sessions that were recorded in this tent city. I started remixing them and would just use their vocals and build the beat around them. We’ve got like ten songs done, but there are so many more. They’ll freestyle for like ten minutes straight. The energy and the cadence and the flow is just so dope. It’s been one of the most inspiring projects. I’m trying to get to Haiti so I can meet some of these rappers I’ve been producing.

You recently got into a bit of a Twitter tiff with Goodwill.
I’ve always been critical of how so many disabled people get shitty fucking jobs when they are capable. Every disabled person I know is good at something. Why does every disabled person have to be the cart attendant? I’ve always been critical of employment practices and disability wage.

Goodwill pays less than minimum wage to people with disabilities. I sent them a message. I was surprised that they responded and the way that they responded was pretty blatant. There has been some momentum going on to put pressure on Goodwill. Some of these Goodwill people are making 22 cents an hour because they are super disabled and it is so ridiculous.

There are people next to them with a stopwatch gauging their effectiveness. It’s so fucked up. I don’t think that there is any good story to it. The way that they responded was basically, Hey, we only do that to a small number of our disabled employees. Oh, like that makes it any better. Those employees must be really crippled—like deaf and blind. It’s so fucking frustrating. The more that I’ve gotten into rap, the more I’m this disabled advocate. I have to be. I feel like I’m more connected to people in the disabled community because of hip-hop, not the other way around.

Is it true that someone once wrote a dis record aimed at you called “Fuck Handicap People”?
It was something like that. It was actually the guy who started the band with me. He has pretty bad substance abuse issues. We tried to make it work for as long as we could, but it blew up because of the substance abuse issues. It was a bad breakup, like every breakup.

Did you battle back?
Of course I battled back. I took him out.

Monday, December 9, 2013

California school ad campaign uses famous faces to try to change perceptions about learning disabilities

From The NY Times. In the picture, an ad for the Bridges Academy features Leonardo da Vinci, who is believed to have had Asperger's and dyslexia.

As a campaign for a school for students in grades 5 through 12 seeks to encourage parents to enroll their children, it also has a larger purpose: helping to change perceptions about students who are described with terms like learning disabilities, learning differences, special needs and special education. 

The campaign is for Bridges Academy, in the Studio City section of Los Angeles, which calls itself a school for the twice exceptional, or 2e — that is, students with high abilities who are judged to be talented, gifted or highly gifted and also dealing with conditions like dyslexia, attention deficit hyperactivity disorder, autism, Asperger syndrome, dysgraphia and problems in processing audio or visual information. 

The campaign presents famous achievers from history — like Jane Austen, Charles Darwin, Leonardo da Vinci, Ralph Waldo Emerson, Abraham Lincoln, Michelangelo, Wolfgang Mozart and George Washington — who are identified as “believed to have been twice exceptional, or 2e.” 

“At Bridges Academy, we are completely devoted to the social, emotional, intellectual, academic and creative growth of our 2e students,” the ads declare. “After all, we could be teaching this generation’s Leonardo da Vinci” (or Darwin, or Emerson, and so forth). 

The campaign carries a theme -- “Educating the exceptional ²” -- that began as a phrase that appears numerous times on the website of Bridges Academy. The school also has a division called The 2e Center for Research and Professional Development. 

The campaign is being created pro bono by an agency in New York named the Terri & Sandy Solution. The campaign includes print ads, online ads, brochures and posters. There are also materials that will be used internally at Bridges Academy, like content for emails and signs to be posted on hallway walls. 

The total budget for the campaign through next year is estimated at more than $1.5 million. 

“For a lot of schools, teachers, the system of education, learning is based on a deficit model: ‘What’s wrong with you? Let’s try to fix that,'” says Carl Sabatino, headmaster of Bridges Academy. 

He estimates that about 2 percent of all students “suffer operating under a deficit model” because they are “capable of creating, producing, thinking” but that goes unrecognized. 

“Yes, they have these learning disabilities,” Mr. Sabatino says, “but they also have this potential that must be tapped.” 

“We have to make sure we help all of them,” he adds. 

The historical figures are meant to “personify the potential of these children,” Mr. Sabatino says, and help the campaign as it seeks to reach “a larger audience.” 

Each famous face “takes you from a label to a person to an icon,” he adds. 

How did a New York agency end up creating work for a school in Los Angeles? As is often the case in advertising, a personal connection figures in, in this instance involving the vice chairwoman of the board of Bridges Academy, Lori Lepler, who is a parent of a seventh grader at the school, her son, Eli. 

Ms. Lepler is a former New Yorker now living in the Los Angeles area who worked at New York agencies that included JWT, then J. Walter Thompson; Frankfurt Gips Balkind; and Ogilvy & Mather. When Ms. Lepler worked as a senior vice president and management director at Thompson, her counterparts on the creative side were the women who eventually founded the Terri & Sandy Solution, Terri Meyer and Sandy Greenberg. 

“Two years ago, when my son joined the school, I realized it was a small school with a huge idea of an education model,” Ms. Lepler says, adding that after she joined the Bridges Academy board, “as a board we developed, with Carl’s stewardship, brand positioning and strategy.” 

“And then I appealed to Terri and Sandy, whom I’ve known for 20 years, with whom I worked side by side,” to work on a campaign, Ms. Lepler says. She praises Ms. Meyer and Ms. Greenberg for what she calls “their strategic horsepower to problem-solve and their creative prowess.” 

After the agency came back with the campaign, Ms. Lepler says, “we immediately recognized, ‘Wow, this is us, and this is big.'” 

The strong point is that the ads are focused “on the end benefit” of an education at Bridges Academy, she adds, which is “to unlock the potential of each student. These kids are so full of potential, but you can’t fulfill it till you find it.” 

Ms. Greenberg says that she and Ms. Meyer, as they began to work on the campaign, decided to focus on how “Bridges is an environment that builds on strengths to help students overcome their challenges.” 

“There was this term on the website, ‘twice exceptional,’ which I’d never heard of,” Ms. Greenberg says, “and we started looking into it” as a way to convey the mission of the school along with featuring the historical figures who may “today be diagnosed as twice exceptional.” 

Ms. Meyer takes issue with a suggestion that the phrase will be dismissed as a euphemism, an attempt to soft-pedal a problem or an example of marketing jargon. 

“We didn’t make it up; we were not coining a phrase,” Ms. Meyer says. Rather, “it’s a term accepted in that community” of educators, she adds, which makes it “a term that’s acceptable.” 

“There are no universal words to explain how these children are,” Ms. Meyer says. “Something meaningful, something uplifting could make kids and parents feel better about themselves,” she adds, compared with what she deems “negative terminology” like “learning challenged” or “learning disabled.”

Friday, December 6, 2013

Dr. Jen Arnold will share cancer battle with 'The Little Couple' viewers

From People magazine:

Vowing to fight her rare form of cancer, Jen Arnold, star of TLC's The Little Couple, has decided to let cameras document her ordeal.

"TLC has chronicled Bill and Jen's lives since 2009 and at their request, we will be following them through this challenge," a TLC spokesperson tells PEOPLE. "Jen is a doctor and teacher and she saw this as an opportunity to educate and possibly help, through sharing her story."

Arnold, 39, is a neonatologist at Texas Children's Hospital where she serves as medical director of the Pediatric Simulation Center and an assistant professor of pediatrics at Baylor College of Medicine.

She is "currently undergoing treatment, including surgery and chemotherapy," she told PEOPLE Thursday.

Arnold and her husband Bill Klein, 38, allowed fans into their journey to become parents to son Will, 3, and daughter Zoey, 2, whom they recently adopted.

"We allowed our lives to be filmed because we wanted people to understand more about our condition and others who are like us," Klein told PEOPLE earlier this year.

Arnold and Klein both have types of dwarfism, as do their children.

"A little girl came up to me in a store and said, 'You are a little person,' very matter-of-factly and I said, 'Yes, I am, thank you very much,' " Arnold told PEOPLE earlier this year. "We have an opportunity to raise awareness and that's wonderful."

Fans who would like to Tweet well-wishes to the family can do so with this hashtag: #GetWellJen.

NY City agrees on access to taxis for disabled people

From The NY Times: Pictured is an accessible cab, but not the one the city has confirmed it will use.

Ending years of acrimony, New York City has agreed to settle a major class-action lawsuit and adopt regulations requiring that half of the city’s more than 13,000 yellow cabs be accessible to people with disabilities within six years, a person involved in the negotiations said on Dec. 5. 

The deal calls for half of all new medallion taxis put into service in any given year to be wheelchair accessible, until the goal of 50 percent of the city’s fleet is reached, the person said. 

The lawsuit, which was filed in 2011, charged that the city, with only a fraction of its medallion taxis accessible to wheelchair users, was in violation of the federal Americans With Disabilities Act. 

Documents related to the settlement are expected to be filed on Friday morning in United States District Court in Manhattan. Judge George B. Daniels, who has been overseeing the case, will eventually have to approve any agreement. The deal is expected to be announced formally on Friday morning at a news conference attended by city officials and disability advocates. 

The agreement allows the Bloomberg administration to resolve one of its major and still-pending legal disputes before Mayor-elect Bill de Blasio takes office. And it seems to increase the likelihood that no matter what approach Mr. de Blasio takes on taxi matters, the settlement will govern the accessibility issue going forward. 

Mr. de Blasio, who has accepted hundreds of thousands of dollars in contributions from the taxi industry, has been a frequent critic of Mayor Michael R. Bloomberg’s taxi policies. They include a plan, invalidated for now, for a near-uniform taxi fleet, known as the Taxi of Tomorrow program. 

Advocates for the disabled have criticized the cab chosen for the program, the Nissan NV200, because it is not wheelchair-accessible without modifications. The settlement is not linked to the Taxi of Tomorrow plan, the Nissan NV200 cab or any program, the person said.

Sunday, December 1, 2013

CBS Evening News profiles Jenny Hatch, Virginia woman with Down syndrome who won landmark legal battle for her independence

From CBS Evening News:

Jenny Hatch has worked at a Virginia thrift store for more than six years.

“I love my thrift store,” she said.

The 29-year-old is meticulous -- making sure the shelves stay organized and the merchandise, fashionable.
“So the pink is, like, done now,” she said.

She even runs the register, with a little help from her co-workers.

The store owners, Kelley Morris and Jim Talbert, have long been Hatch’s friends. Now, they are also her guardians-- the result of a landmark legal battle for her independence. 

“I feel so much happy that I live here now because now I just come home and spend time with my friends,” she said.

Hatch, who has Down syndrome, wanted to live with Morris and Talbert. Her mother and step-father wanted her to live in a group home.

The case went to court.  Jenny won.

 “We had to change long held, you know, ingrained beliefs about what people with disabilities can and can't do,” said attorney Jonathan Martinis.

The judge granted Morris and Talbert temporary, limited guardianship over Hatch until August 2014. After that -- it's up to her.

“I don't think Jenny needs a guardian for everything in this world,” Martinis said. “I think, to quote Jenny, she just needs a little help.”

Since her court victory, Hatch has become an icon for the developmentally disabled. In October, she also became the face of a foundation:  The Jenny Hatch Justice Project.

D.C. native Ryan King is their first client.

“Everybody needs a little help every now and then, but once you're independent, I think you're good to go,” he said.

When King turned 18, his family became his legal guardians. But his mother, Suzie, says her son doesn't need that level of supervision, so they're taking their case to court.

“We followed Jenny's story and we decided, well, why not try it ourselves?” Suzie King said. “We tried it before and even though we were turned down, we've decided to try it again.

When her guardianship expires next year, Hatch is still deciding what to do: Power of attorney, guardian or neither, she's won the right to choose.

“And I'm here to spread the message for disabilities,” she said. “I'm taking over.”

In the meantime, Hatch says she'll continue to get by – with a little help from her friends.

Wednesday, November 27, 2013

Reporter for The Center for Investigative Reporting’s California Watch expresses concern over scarcity of disability coverage as he accepts inaugural Katherine Schneider Journalism Award for Excellence in Reporting on Disability

From the National Center on Disability & Journalism:

Ryan Gabrielson (pictured), a reporter for The Center for Investigative Reporting’s California Watch, expressed concern over the scarcity of disability coverage as he accepted the inaugural Katherine Schneider Journalism Award for Excellence in Reporting on Disability Nov. 25.

The award, administered by the National Center on Disability and Journalism at Arizona State University, recognizes the best disability reporting in all mediums – radio, television, print and online. Gabrielson received a trophy and a $5,000 prize on behalf of his news organization for “Broken Shield,” a series of reports detailing routine failure on the part of police to protect the developmentally disabled at California care institutions.

After accepting the award, Gabrielson spoke about investigative reporting and coverage of the disabled community as part of a Monday evening lecture series at the Walter Cronkite School of Journalism and Mass Communication. He said stories about the disabled are often under-covered in the media because reporters don’t recognize them or don’t know how to go about reporting them.

Stories about the disabled “are like shuttered big box store buildings to reporters,” Gabrielson said. “They’re monoliths – ugly, windowless, featureless. Their doors appear barricaded.”

“Broken Shield” was chosen from among 72 entries submitted by journalists around the world.

Schneider, who was in attendance for the awards ceremony and Gabrielson’s lecture that followed, said the response to the first contest was incredible, and she called Gabrielson’s work “just great journalism.”

Gabrielson said the story came to him as a tip in April 2011 about financial fraud within a small, obscure Californian police force called the Office of Protective Services. What at first appeared to be a “quick-turn investigation” spiraled into an exhaustive probe over two years and uncovered a system that ignored patient abuse and even deaths.

“The developmental police story covered every condition of my beat — cops who don’t arrest criminals, courts that hardly ever see a patient abuse prosecution, and catastrophes,” Gabrielson said.

Since the investigation was published, state lawmakers have begun to address the problems with a series of bills to begin “reforming the situation,” he added.

Gabrielson said working on the series opened his eyes to disability coverage. “Until you’re aware of the disabled and what they go through, you don’t see them,” he said.

“Broken Shield” also was a 2013 finalist for the Pulitzer Prize in Public Service and won a 2012 George Polk Award and a 2012 Investigative Reporters and Editors Award.

Second-place in the Schneider Journalism Award contest and a $1,500 prize went to Gareth Cook for his New York Times Magazine piece “The Autism Advantage.” Two honorable mentions, each with $500 awards, went to Daphnee Denis and Hoda Emam for a video documentary “Playing by Ear,” and Broughton Coburn for a Dartmouth Alumni Magazine article, titled “Second Chapter: A Portrait of Barry Corbet.”

The awards are funded by Schneider, an author and a retired clinical psychologist who has been blind since birth. She also supports the Schneider Family Book Awards, which honors books that embody artistic expression of the disability experience for adolescent audiences.

“She is a kind, tough as nails woman, who gets disability on the most personal gut-level,” said contest judge Tim McGuire, the Frank Russell Chair of Journalism at the Cronkite School and a member of the NCDJ board.

Entries for the 2013-2014 contest will be accepted beginning in May 2014.

Louisville, Ky., man with Down syndrome turning heads as actor in 'Produce' movie role

From The Louisville Courier-Journal:

It was the middle of the afternoon in the produce department at the ValuMarket on Hurstbourne Parkway, and David DeSanctis (pictured) was naming PLU codes.

“Pear, Anjou: 4416,” said DeSanctis, a 21-year-old Ballard High School graduate who was born with Down syndrome. The man standing next to him, Kris Polaha, looked impressed.

“Banana — that’s easy,” DeSanctis said. “Everybody loves bananas. 4032.”

“Cut!” the director yelled. “Next time, you want to say ‘4011,’ ” Polaha said to DeSanctis, giving him the correct banana code.

DeSanctis and Polaha star in an independent film that wrapped filming in Louisville last week. The movie, called “Produce,” tells the story of a washed-up former major league baseball player who meets a produce clerk with Down syndrome. Their friendship pulls the ballplayer’s life out of an alcoholic tailspin.

The movie will now go to Los Angeles for editing, and the filmmakers expect to submit it to film festivals early next year.

Chris Dowling wrote and directed the film. Dowling, who grew up in Texas and lives in Los Angeles, originally planned to shoot the movie in Austin, but he and producer Milan Chakraborty decided on Louisville instead.

Chakraborty explained that he first visited Louisville for the Kentucky Derby this year, and he caught a glimpse of Slugger Field while driving one day. Because Polaha plays an ex-baseball player, the filming location needed a field nearby.

Still, Chakraborty didn’t really consider making the movie here until he read about Jennifer Lawrence’s work on behalf of Down syndrome. He then got in touch with Gill Holland, whose Louisville-based The Group Entertainment produces movies.

But the real clincher came when Mayor Greg Fischer phoned Chakraborty. “He talked about his background as a businessman,” Chakraborty recalled, appealing to the producer’s former profession as an accountant by pointing out the potential savings Louisville could offer over larger cities.

The producer and director both rhapsodized over how much cooperation they’ve received in Louisville, from the police to Slugger Field and ValuMarket.

 “It’s amazing how businesses and people are opening the doors,” Dowling said. “That has been such a big help.”

“It needed to be filmed where the community plays a big part,” Chakraborty said. “It’s about the heartland.”

While Chakraborty, Dowling and some of the crew came in from Los Angeles, about 75 percent of the crew was hired locally, according to Chakraborty. DeSanctis, the only Louisville actor to take a top role, met the filmmakers early on, and Chakraborty encouraged him to audition.

“We just didn’t have any idea it would ever happen,” said Bill DeSanctis, David’s father. “We thought he (Chakraborty) was just being nice.”

But DeSanctis, who had some previous experience onstage at Ballard, landed the part. “I felt powerful after I realized that I got the part,” DeSanctis said, taking a break from memorizing some lines with Polaha before the day’s shoot.

DeSanctis described his character, whose name is Produce, as “timid and shy and not powerful or stern and firm and invincible.” DeSanctis himself is the opposite — talkative, outgoing and quick with a joke.

“David’s such a ham, I knew he could do it,” said his mother, Julie Wallace. “It’s been a dream of David’s for years. ‘I’m going to Hollywood and be a movie star,’ he says.”

Back on the set, the actors and crew ran through the scene with the PLU codes a few more times, while ValuMarket customers went on shopping around them.

Between takes, Dodie Harmon, a nicely dressed older woman in a teal pantsuit and orange silk scarf, took note of the unusual cameras, microphones and lights crowding up the produce section.

“Who’s the actor?” she asked Polaha, who was standing idly with a shopping basket, looking very much like another customer. Polaha pointed to himself. “What’s your name?” Harmon asked. “Kris,” he said, offering his hand.

Polaha came into town a couple of days before the start of the shoot to hang out with DeSanctis and develop a rapport. “David has allowed me to put aside every preconceived notion I ever had about people with Down syndrome,” Polaha said. “He’s taught me a lot.”

DeSanctis returned the compliment. “Even though in the movie I’m the one that’s changing his life, in real life, he’s the one that’s changing my life,” DeSanctis said, before making a joke at the expense of Chakraborty, who was standing nearby.

“Milan ... I think that I’m the one who is really changing his life around,” he said with a perfectly straight face. “I think Milan Chakraborty needs a life adjustment.”

Tuesday, November 26, 2013

Roosevelt's polio wasn't a secret: He used it to his 'advantage'

From NPR:

Americans remember Franklin Delano Roosevelt as the president who led the country through the Great Depression and World War II. He bolstered the nation's spirits with his confidence, strength and optimism, despite being crippled by polio, a disability that's largely invisible in photographs and newsreels of his presidency.

But historian James Tobin says, despite mis-impressions to the contrary, Americans of Roosevelt's day were well-aware of his disability. In fact, Tobin says, Roosevelt's struggle to overcome his affliction was an important part of the personal narrative that fueled his political career.

Tobin tells Fresh Air's Dave Davies, "[Roosevelt] only discovered who he really was through the ordeal of polio. ... It gave him a kind of confidence in his own strength that perhaps no one can have until you're tested."

Roosevelt contracted polio at the age of 39, and Tobin's new book explores his battle with the illness and the ways it molded his character and influenced his rise in the Democratic Party. Tobin has written previous books about the Wright brothers and war correspondent Ernie Pyle. His new book is The Man He Became: How FDR Defied Polio to Win the Presidency.

Interview Highlights

On how good sanitation made kids more susceptible to polio
Before the polio vaccine, pretty much every little kid ingested the polio virus but was protected by maternal antibodies, so even though the virus passed through his or her system, they wouldn't become sick with disease. As sanitation got better, they had fewer immunities, and so if the virus did creep into a community with good sanitation, kids were more likely to get sick and to become seriously ill.

Roosevelt had grown up on an isolated estate in upstate New York. He probably had immune deficiencies to begin with — he was always getting sick with one bug or another. So he was particularly susceptible when, even though he was an adult, he contracted the virus.

On FDR's recovery efforts
Roosevelt went into a long period of physical rehabilitation after recuperating for several months. By December 1921, he was ready to have a physical therapist begin to massage his muscles, begin to work his muscles, begin to try to figure out exactly the extent of the damage. As more and more time passed in the coming weeks and the early months of 1922, he was able to begin to exercise on his own. This was laborious, difficult: He really could not even stand up on his own at all for months and months, and so this was a matter of lying in his bed, performing these minute little exercises, trying to move one muscle and then another muscle. ... It was painstaking, it was difficult. He had to have his legs put into casts at one point to prevent against contractures. ... It was really a grueling process.

On misimpressions of FDR's openness about his condition
When I've talked to people in the past ... I've always asked them, "Did you know about FDR's condition?" And they've always said yes. What they say is, "We realize later that he was more disabled than we knew, but we certainly knew he was disabled, we knew that he couldn't walk." I think that this misimpression comes from a couple of things:

There was a book published in the 1980s called FDR's Splendid Deception in which the writer, Hugh Gregory Gallagher, I think overstated the evidence for FDR covering this up. And then in the debate over the Roosevelt memorial in Washington that took place in the 1990s, that theme got repeated over and over again by various advocates in that argument. And then it got put into a couple of television documentaries, and so it just had a viral effect.

All you have to do is go back to the newspapers of the time, especially from the 1920s when Roosevelt was making his political comeback, and his disability was discussed constantly. He was very frank about it. So there's no question that people knew about it. And you see during his presidency, people who were themselves disabled, people who had polio, their children had polio, writing to FDR in the White House by the hundreds and talking about his disability. The [nonprofit] itself, which came about during Roosevelt's presidency, he was the leader of it, was an effort to fight polio. The polio campaign that was waged every year had Roosevelt as its figurehead.

On how FDR's condition affected his marriage to Eleanor
I think at first the polio brought the two of them closer together. It was only a few years earlier, 1918, that Eleanor Roosevelt had discovered that he had had this affair with her own social secretary, Lucy Mercer, a situation that everyone knows about. So the marriage had been deeply damaged. Her trust for him had been destroyed.

But polio sort of called upon her to give him all the care that she possibly could give him. That was the sort of wife that Eleanor saw herself as: somebody bound by duty to help her husband. And she absolutely did for many months. She cared for him, she sort of organized his care with physical therapists and nurses at the same time that she was looking after five children and a couple of different households. She really did devote herself to his case.

As he began to pursue his recovery in other places where he could go for treatment, she increasingly saw that she couldn't devote the rest of her life to him and didn't care to. She wanted to express her own individuality, and she wanted to pursue a position of politics of her own, and so she increasingly did that. After 1922 into 1923, they began to lead separate lives, supporting each other in what they were doing but acknowledging they were no longer the kind of husband and wife that they had been before his affair.

On how Roosevelt worked around his condition
Roosevelt realized that when you were crippled — and that was the word that he would use — you have a tendency to make people uncomfortable. People don't know what to say, they don't know where to look, they don't know how to treat you, they don't know whether to feel pity for you, when pity is the last thing that you want. ...

He had to persuade people to feel comfortable in his presence. ... [The therapists and he] began to work on his gait, to work on the way he would walk with the canes and crutches and assistance he would use. So his walk, although slow, began to look more and more natural. And he would seat himself, and he would throw up his head, he would begin to talk — he was always talking, actually — to put people at ease. And this whole physical routine that he developed of putting people at ease was enormously effective, and it made people forget that he was disabled.

On FDR using his disability as a political advantage
[In a speech in Rochester, N.Y.,] he was talking about the needs of disabled children in the state of New York and he mentions himself. He says, "I myself have been through this ordeal, and I am a symbol of what can happen when people with disabilities are strongly supported."

And nobody had expected him to say this out loud; nobody had expected him to address this issue in this way, to turn the disability on its head and make it into this advantage. And so it had [an] electrifying effect on the audience. ... I think Roosevelt ... realized this was a strong part of his presence as a candidate, and it was something that actually appealed to people.

On whether his disability made him a better president
Certainly people close to him said it tempered him. Eleanor herself said it made him stronger and more courageous.

That doesn't quite make sense to me. I think people have those innate capacities or they don't. The crisis draws it out of them. It allows them to see who they really are. And that's why I chose the title The Man He Became. I think he was that man before he became sick, but he only discovered who he really was through the ordeal of polio. So it gave him a kind of confidence in his own strength that perhaps no one can have until you're tested.

I also think it inevitably gave him a kind of passion for people who are suffering that he couldn't have had if he had not deeply suffered himself. That capacity was perfectly timed for the country's problems in the Great Depression.