Saturday, October 26, 2013

More U.S. museum programs welcome art lovers with disabilities

From The NY Times. In the picture, Annie Leist, left, a volunteer at Boston’s Museum of Fine Arts, guides Mercedes Austin, 17.

ON a recent Friday night, the Metropolitan Museum of Art in New York held its first public exhibition of original art made in its “Seeing Through Drawing” classes. Participants — all blind or partly sighted — created works inspired by objects in the museum’s collection that were described to them by sighted instructors and that they were also allowed to touch. 

In another gallery, a tour in American Sign Language was followed by a reception for deaf visitors. And on select Fridays, new “multisensory stations” invite all guests — including those with a range of disabilities — to experience exhibits though scent, touch, music and verbal imaging, or describing things for people with vision impairment

“The Met has a long history of accessibility for people with disabilities,” said Rebecca McGinnis, who oversees access and community programs. As early as 1908, the museum provided a “rolling chair” for people with mobility issues, and in 1913 held talks for blind public school children, she said. Today, there are programs for people with disabilities nearly every day. 

Such efforts by museums are likely to increase. In 2010, about 56.7 million people, or 18.7 percent of the population, had some level of disability, according to the Census Bureau. And both the number and percentage of disabled Americans are expected to increase in coming years because of the aging of the population, greater longevity and more cases of certain types of learning disabilities, said the Open Doors Organization, a nonprofit group in Chicago serving disabled people. 

“Museum designers have used a great deal of imagination, much more than is required by law, and do remarkable things,” said Lex Frieden, a professor at the University of Texas Health Science Center in Houston and director of one of the regional centers to help compliance with the Americans with Disabilities Act of 1990. 

Mr. Frieden, whose spinal cord injury after a traffic crash in 1967 left him a quadriplegic, said museums made commitments to accessibility before the 1990 law and even earlier federal legislation. The Smithsonian Institution has long been a leader in the field; its definitive guidelines to accessible exhibition design are used globally, he said. 

Early adaptations to overcome barriers to sight were mirrors on ceilings, video screens at varying heights and lowered pedestals and cases “to a sweet spot of visual field” for all users, including wheelchair users, said Beth Ziebarth, director of the Smithsonian’s accessibility program. 

Innovations continue. A new program allows families with children on the autism spectrum and cognitive disabilities to arrive before opening hours and to receive materials in advance to get familiar with the building and exhibits. 

In a crowdsourcing effort, the Smithsonian last year began inviting visitors to provide audio descriptions on mobile devices of the nearly 137 million objects in its collection — an example of how measures primarily to help people with disabilities can often benefit the public. 

Similarly, when the Museum of Fine Arts in Boston opened its Art of the Americas wing a few years ago, it took a universal approach to its mobile multimedia guide. Hannah Goodwin, the manager of accessibility, said if a person with a vision or hearing disability is visiting the museum with a nondisabled friend, “you use the same devices, with access to the same content.” 

In Manhattan, the Whitney recently introduced vlogs — video tour blogs — whose segments are recorded by deaf hosts in American Sign Language. But since they are also captioned in English, they have become popular even among people without hearing impairments. 

“It’s a brave new world out there” said Larry Goldberg, director of the National Center for Accessible Media, a research and development department at WGBH in Boston. “There is such a range of new technology, and museums are taking advantage of it.” 

For example, the Art Institute of Chicago plans to experiment with 3-D printing to reproduce artworks and allow visitors, like those with Alzheimer’s disease, to explore the texture, scale and other sensory elements of objects in ways not otherwise possible. 

The Guggenheim’s mobile app includes closed-captioning for videos; enlarged-text capability, verbal description tours and advanced screen-reader technology that enables full navigation through touch and voiced description of everything on the screen. 

Indoor navigational services are coming to museums, Mr. Goldberg said, that are ideal for people with visual impairments. For example, ByteLight software translates location signals from modified LED lights to smartphone apps to help visitors interpret exhibits or navigate within the museum. 

The Museum of Science in Boston expects to broaden its testing of ByteLight technology in coming months. “For indoor location awareness technology, it is the most promising,” said Marc Check, the museum’s director of information and interactive technology. “Technologies like GPS are effective outside, but much less precise inside.” 

The museum is also experimenting with interactive touch-screen technology. It has built a large touch table, like a giant iPad, that will give people with visual and fine motor skill limitations access to content by swiping and gesturing. A prototype, Mr. Check said, is expected to be in place at an exhibit in the next few months.
Smaller museums are offering services for the disabled, too. In the summer the Norton Museum of Art in West Palm Beach, Fla., joined with local mental health agencies in a program for adults with mental health or substance abuse issues. The North Carolina Museum of Art in Raleigh recently added nine newly acquired Rodin bronze sculptures to its touch tours. The Samuel P. Harn Museum of Art at the University of Florida conducts off-site programs for residents of nursing homes and retirement centers who can’t visit the museum. 

For exhibitions and performances at museums and other sites, the Leadership Exchange in Arts and Disability, at the John F. Kennedy Center for the Performing Arts in Washington, D.C., advises on things like assisted-listening systems or how to stage sensory-friendly productions. When Eric Lipp, executive director of Open Doors, wanted to improve accessibility at Chicago cultural institutions through its “Inclusive Arts and Culture Program” several years ago, he turned to the exchange. 

Since then, the Steppenwolf Theatre Company in Chicago has enhanced its services and outreach. Live audio description and American Sign Language interpretation during performances have improved in quality and are offered at more performances. New services have been introduced, like touch tours that allow blind and low-vision guests to go on stage before shows to become familiar with the space. 

The Steppenwolf and others “go above and beyond,” said Mr. Lipp, who is partly paralyzed. “And they’ve done it for no other reason except the social benefits.”

App to assist deaf mobile-phone users hits FCC roadblock

From The Washington Post:

It has been nearly two years since Miracom sought Federal Communications Commission approval for an app designed to help the deaf use mobile phones.

The app, known as InnoCaption (pictured), allows deaf users to “hear” a person talking on the end of a call with the help of a stenographer who transcribes the conversation.

But Miracom needs FCC approval to gain access to a government fund that would allow deaf customers to use the app for free.

The FCC, troubled that the $700 million fund has become riddled with fraud, is refusing to grant any new companies access to the fund. In some cases, the agency found, scammers were using phones meant for the deaf to hide their identity. In others, doctors were paid to refer patients to the service — whether they needed it or not.

The fund stands to become heavily burdened as aging baby boomers join the 48 million Americans who have some form of hearing loss. Fraud, therefore, is something agency officials say that they can’t afford.

The FCC declined to comment for this story, but in a January government filing it said that fraud puts the fund “in jeopardy and threatens to deprive people who are deaf or hard of hearing of the benefits of the program.”

Deaf community advocates worry that the FCC’s delays are hindering progress that is critical for those who have trouble hearing as the world increasingly moves to mobile technology. “The more competition you have in the field, the better,” said Lise Hamlin, director of public policy at the Hearing Loss Association of America. “There’s no motivation to get better.”

That’s certainly a worry for Miracom. The company’s investors are growing impatient, and company executives say they are worried that it will have to kill the app.

“The product would go away, the opportunity would go away,” said Chuck Owen, chief operating officer of Miracom. “We do want to provide this service, but not at all costs.”

The Interstate Telecommunications Relay Services Fund’s fraud problems came to light in 2012. The fund pays for technology that allows the deaf to speak to other users through live operators or computer software that transmits their conversations in real time. Miracom, Sprint, AT&T, Purple and other service providers are reimbursed for every minute of a relay call.

As of October 2012, providers logged about 8 million minutes of calls per month.

Some providers have given out special captioned phones for free to those who didn’t need them, according to government filings. Others were paying audiologists who referred patients to the captioned telephone program against suggested guidelines.

The FCC also found that the service was attracting scammers who want to avoid the cost of making a call or disguise their identity. (The transcriptionists at the center of the calls are prohibited from revealing what they hear or alerting authorities if they suspect a crime.)

In May, AT&T paid an $18.3 million fine after the FCC accused the company of failing to adequately verify the identities of those registering for the phones. The registration process, the agency said, made it too easy for foreign scammers to use the phones to buy goods with stolen credit card numbers. In a complaint filed by the Justice Department at the time, the government said the fraudulent calls accounted for up to 95 percent of AT&T’s call volume paid for through the fund.

That type of fraud helped prompt an explosion of demand for the fund, which is supported by fees from approved service providers. This was especially pronounced in the area of Internet-supported services, in which the FCC saw spending on Internet caption services rise from $40 million in the first half of 2012 to $70 million in the second half.

At the current growth rate, the FCC expects the overall fund to reach $1 billion by the middle of 2014.
The FCC has become sensitive to the appearance of fraud in its public programs after it faced scrutiny this year for Lifeline, known as the Obama phone program. It subsidizes phone costs for low-income Americans, but investigators found that it was being used by people who did not qualify.

To keep the telecommunications relay fund from running into similar problems, the FCC has proposed an overhaul in the way the fund is run, including prohibiting service providers from paying doctors who refer patients to the service and requiring customers to provide registration information.

The FCC has proposed new rules to address fraud, but has not scheduled a final vote.

Meanwhile, members of the deaf and hard-of-hearing community have become frustrated with the delays. Technology advances have made instant communication the norm, while they suffer through clunky conversations with captioned land-line phones or inaccurate voice-recognition software.

Miracom says its app would be helpful to people such as Mark Hope, a program manager for the U.S. Navy. He had to evacuate his office at the Washington Navy Yard during last month’s shooting. Hope, who has been mostly deaf since birth, said a captioned mobile phone would have let him communicate more quickly with colleagues and emergency personnel.

Hope told The Washington Post in an e-mail that he would have been able to “call 911 and quickly get proper directions without any mix-up or miscommunication as would otherwise be the case.” Also, he said, he would have been able to better reassure his family that he was unharmed, rather than communicating by text and e-mail, which drained his phone’s battery.

“The one true benefit of InnoCaption is the peace of mind and the reassurance that your communication with loved ones will be easily and quickly accessible,” he said.

As the world becomes more dependent on cellphones, deaf community activists say, technology that allows the deaf and hard of hearing to use mobile devices is becoming critical.

“From my perspective, I don’t know whether InnoCaption is end all and be all, but the concept of a mobile caption system is hugely important,” said Hamlin, of the Hearing Loss Association of America. “You can’t text message a tow company.”

Wednesday, October 23, 2013

Black deaf filmmaker wants to address lack of representation with film & TV projects

From IndieWire:

Ann Marie Bryan (who goes by the nom-de-plume Queen Jade) is the FIRST (her capital letters, not mine) Jamaican-American deaf filmmaker who proudly calls herself “a pioneer in her own right.” And who’s going to argue with that?

She has been producing and writing films for over 20 years and her previous feature film, If You Could Hear My Own Tune, was accepted into several film festivals, including 2011’s San Francisco Black Film Festival and Roxbury International Film Festival.

As she says, she believes “in social change and social justice and believes in promoting, spreading and increasing awareness about the lack of Deaf African-American actors cast in roles in the mainstream movie industry and in television.”

And one major area of concern for her is the huge lack of representation of black deaf culture, adding that the media at large “lacks representation addressing issues regarding diversity, intersectionalities and Deaf People of Color. We all have stories to share, so many!”

As the result of that goal, Ms. Bryan has launched an Indiegogo campaign to raise $75,000 to produce four original films she intends to make.

The first project, the feature film The Shattered Mind, is now in post-production with the aim of being done in time to submit to the 2014 Tribeca Film Festival and 2015 Cannes Film Festival.

She calls Shattered Mind “a psychodrama and surreal story about a hard-of-hearing teenager who juggles family, peer and culture conflicts while in search of her own sexual identity, freedom, and self-realization.”

The film’s protagonist, Zhane Rain, is an intense and carefree high school senior with three generations of hearing and deaf family members who unravels family secrets behind the traumatic brain injury that caused her deafness. 

Ms. Bryan is also currently developing two new TV-oriented pilots for 2014. The first one, The Two Essences, is a contemporary story about a modern-day deaf mother-daughter relationship; a day trader mother, who one day quit her job to go back to school. 

The other TV pilot is titled Kaomi’s Three Charms, about a New York hard-of-hearing filmmaker who befriends a deaf playwright, an actor and a musician. 

But Ms. Bryan soldiers on, as she says, “because I am persistent and relentless. I believe in the cause. I am passionate about my films, my community… We are constantly being ignored, being shoved on the sidelines. Marginalized as we call it. I am determined to change that.

Researchers are working hard to harness the hands-free nature of Google Glass to improve the lives of those with disabilities

From USA Today. In the picture, quadriplegic Tammie Lou Van Sant, 52, demonstrates Google Glass at her Santa Cruz, Calif., home.

The "it" in question is Glass, Google's wearable computer that last summer found its way onto the faces of about 8,000 Glass Explorers, people who, like Van Sant, wrote the search engine juggernaut with a compelling reason why they should be among the first in the world to acquire the $1,500 invention.

Although a number of scientists have been toiling in obscurity since the 1970s on glasses that harness computing power, Google was first out of the commercial gate with a lightweight, voice-controlled device that features a small square prism just off the right eye and a touch-sensitive temple. Through voice and touch, Glass can shoot pictures and video, make and receive calls and texts, and access the Web.

Glass has an expected on-sale date sometime in 2014. As a product still in its infancy, it recalls the iPhone's early days as a smartphone with promise and woefully few apps. But while Glass' full potential will be determined down the road, it already has distinguished itself as a potentially life-changing tool for the disabled.

Researchers in a range of disciplines are looking into ways to leverage Glass' inherent advantage over the smartphone — its hands-free nature — to help those who navigate life with compromised mobility, vision and hearing. There's even work being done to assist those with autism, using facial recognition software to help identify the emotions of others.

Perhaps not since the invention of text-to-voice and other speech-recognition software has a tech invention had such potential to help the disabled.

"Glass will be revolutionary for the disabled," says Rosalind Picard, founder of the Affective Computing Research Group at Massachusetts Institute of Technology's Media Lab, whose focus is autism and communication technology.

"With facial analytics, it's possible to, with the subject's approval, have Glass scan a face and put up a green light if the person is intrigued, yellow if they're confused or red if they're bored," she says. Then, chuckling, she adds, "It could even whisper at you during that date, 'Hey, she's losing interest.'"

Picard says speech recognition is getting so good that a deaf person soon could see a real-time transcript of what a friend is saying in Glass' prism. A person with limited vision could take walking directions from Glass through its bone-conducting speaker housed in the right temple.

"One day soon, we'll look at regular glasses the way we now look at old phones," she says. "It will change things so much."

What pleases Mark Perriello is that, thanks to the feedback-intensive Explorers program, Glass is being developed with input from the disabled.

"All too often, technologies are created and then people ask, 'OK, what if people with disabilities need to use it?'" says the CEO of the American Association of People with Disabilities, a Washington, D.C.-based advocacy group founded in the wake of the 1990 Americans with Disabilities Act.

"From taking a picture with ease to helping those with low vision redefine their world," Perriello says, "this has the possibility to level the playing field."

Wearable computers have always been about increased accessibility, says Thad Starner, who has been toting around computerized glasses of his own design since 1993. In 1998, he demonstrated his creations to a pair of Stanford University students named Larry Page and Sergey Brin. Google's co-founders contacted Starner three years ago and made him Glass' lead designer.

"I could cite academic papers for you, but Larry says it best, 'With Glass, we are reducing the time between intention and action,' " Starner says. "Glass keeps you in the flow of what you're doing, and for people with disabilities, that's even more vital. Suddenly someone isolated at home is more fluent with (text) messages than their friends with a mobile phone. It really can change lives."

For many scientists, the thrill is in trying to turn sci-fi dreams into today's reality. But for some, the quest is personal.

Catalin Voss has a cousin with Asperger syndrome, a high-functioning form of autism; that has led the precocious German-born Stanford University sophomore to found Sension, a company whose missions include developing Glass software that turns the expressions of others into on-screen keywords like "happy" and "angry."

"Emotional recognition (software) is still in its early days, at about the state of a 3-year-old, but I still felt passionate about trying to do something meaningful," says Voss, whose software maps 78 points on the face. "From my personal experience, I know that the issues (for my cousin) are recognizing an expression, and then smiling back. Glass is good for the first, and can help with the second."

As a youngster, Kim Xu used to attend Girl Scout meetings at the home of a girl whose brother was deaf. Fast-forward to last year, when the Ph.D. candidate in human-centered computing at Georgia Tech co-created SMARTSign, an app that pushes out short video tutorials on American Sign Language.
"For my Ph.D., we studied how six families with deaf children used the app," which is also available for Android phones, says Xu, who now works for tech consulting firm Tin Man Labs in Huntsville, Ala.

"Seeing them learn at a faster pace was so satisfying. But it was clear that by using (the app with) Glass, people were able to learn at a more constant pace," she says. "With a phone spending so much time in your pocket, you don't really have it out in front of you as much as you think."

Shaun Kane can appreciate the merits of Glass perhaps a bit better than most researchers. His own physical disability limits him to the use of one arm while he works on ways to help the visually impaired through technology.

"One of the most basic challenges for many disabled folks is just getting around every day carrying stuff, getting things out of pockets and things like that," says Kane, assistant professor in the department of information systems at the University of Maryland in Baltimore County. "If I have something in one hand, that's it for me."

Kane has been using Glass daily since August, mostly to snap photos on the go. But he's bullish on the device's potential to vastly improve quality of life for the blind. "Having something on your head that is pointing naturally in the direction you are looking is invaluable," he says.

Jeff Bigham, who conducts research in the same area, agrees. "Imagine this," he says, excitedly. "A blind person with Glass walks by a store and Glass recognizes it and announces what it is. Maybe that person didn't notice that it changed from a restaurant to a dry cleaner, but now he knows. These are things the rest of us take for granted, but for a blind person, it's truly powerful."

Bigham, an assistant professor at the Human-Computer Interaction Institute at Carnegie Mellon University in Pittsburgh, has developed software that in fact can do such things. A video he posted on YouTube shows a blind man wearing glasses walking through a room filled with equipment, and each time a piece comes into Glass' view it describes the apparatus to the wearer.

Glass' other big score comes in a simpler form. Bigham's VizWiz is a smartphone-based project that has seen 5,000 blind users ask more than 70,000 visual questions ranging from "What's this spot on my baby's head?" to "Do I look nice?" — questions and photos that are then sent out to the Web and answered in less than a minute by live respondents working through Amazon Mechanical Turk.

Where smartphone-based VizWiz users have to contend with the inherent hassle of "using a handheld device while blind, Glass offers the chance to provide continuous, hands-free visual assistance," Bigham says.

When Larry Kaplan wrote in to Google's #ifihadglass contest, he wasn't looking to use them himself. Instead, Kaplan, who sells discounted sneakers online, wanted to make Glass available to the ALS patients he has befriended as a local volunteer over the past 15 years.

"When you have ALS (also known as Lou Gehrig's disease, which cripples motor functions) you often don't feel like a part of full society, and I thought maybe wearing Glass could help," says Kaplan of West Chester, Pa. "It's been amazing. Some patients have no use of their hands, and others are losing their vocal abilities. But they talk to Glass and it understands them."

One of the beneficiaries of Kaplan's gesture is Gary Beech, a retired IRS tax examiner from Philadelphia. "It's very comforting to know that people in my position can still experience some things they might not be able to in life," Beech writes in an e-mail. "Glass can be worn by somebody outside watching a soccer game, and I can watch it all happen at home on a computer. Truly amazing."

One blind Glass Explorer says the potential for greatness lies just beyond the product's initial limitations.
"I'm a little frustrated with (Glass), not because it's something I can't use, but because with trivial modifications I would use it all the time," says Sina Bahram, founder of disability-focused Prime Access Consulting in Cary, N.C., and a Ph.D. candidate in computer science at North Carolina State University. "It's not pie in the sky. For me, Glass could be an amazing conduit to the outside world."

Among his complaints are a volume control that is "embedded too far deep in the menu," a hypersensitive temple touch pad and a "ban on facial recognition (out of privacy concerns) that really hurts those of us who are blind."

Bahram is at least hoping for object recognition to become a reality. "Think about what it's like for me to hail a cab," he says. "Now, picture me wearing a device that sees a cab heading my way, and alerts me to it. That's a paradigm shift."

For Columbia University law school student Alex Blaszczuk, Glass didn't need to deliver a seismic boost but rather just lift her occasionally sagging spirits.
Two years ago, she was on the verge of graduating with her law degree when an oncoming car hit hers while she was traveling in Vermont, leaving her paralyzed from the chest down. With great effort, she has returned to Columbia, where she uses Glass to help her research and communicate with friends and social networking circles.

"My life now is about learning to accept that some things are not available to me," says Blaszczuk, 26, a Chicago native who is fluent in Polish and focusing on international transactional law. "But when I took my first picture with Glass, I smiled and thought, 'That's one less thing I have to be OK with not being able to do.'"

She says an eventual improvement in voice-command technology should make using a device such as Glass even more beneficial, cutting valuable and frustrating time off chores that the non-disabled take for granted, whether answering an e-mail or responding to a text message.

But in the end, the biggest gift Glass gives her is that of feeling normal.

"People with disabilities often are seen either as tragedies or heroes," she says. "But when I'm using Glass, I'm just like anyone else. I can post a stupid cat picture or a shot from a tour of Brooklyn that I took. That kind of self-expression means I'm not limited to being a stereotype."

Santa Cruz's Van Sant is all about self-expression this time of year. Her modest home that she shares with her mother is overrun with Halloween decorations, including three fake graves on her front lawn and a skeleton that writhes in electrocuted pain as you make your way up her wheelchair ramp.

Inside, there's more of the same festive ghoulishness, along with an overly friendly Labrador service dog named Robby who can open doors and windows but is far more interested in being caressed.

Van Sant takes Glass off only to sleep, preferring to have her device handy for that unexpected amazing-pets video or perhaps a breathtaking sunset. The device may seem like a wacky cyborg-like gadget to many on this planet, but for this woman, it has brought a sense of joy that was long banished after a truck hydroplaned, flipped and crashed into her car on a rural highway south of here.

"I'm out more doing stuff since I got Glass, interacting with people and the world," she says. "Sure, sometimes people see me talking to Glass and assume I'm weird. But most times they come up and go, 'Oh, I've heard of those, can I see them?' "

Robby suddenly bounds out of his dog bed over to a visitor with puppy energy; Van Sant apologizes and asks the dog to lie down.

"I waited almost 20 years to be able to take a picture," she says softly, shaking her head in quiet amazement. "I simply can't imagine anything more useful to me."

Robby stands up again. Van Sant sighs.

"Well, other than an invention that would make my dog mind me," she says, laughing. Then, smiling at a contrite Robby, she commands: "Glass … take a picture."

Saturday, October 19, 2013

Fake disabled character karma - NBC cancels 'Ironside' reboot after just 3 episodes

From Indie Wire:

Shocked? Not me. Not at all. And if you read my thoughts on the premiere episode, and those after, you really shouldn't be shocked either.

The series just hasn't been quite the draw that NBC likely hoped it would be.

The debut of Ironside drew decent numbers - 6.8 million viewers and a 1.4 rating (adults 18-49) - thanks in part to the series that leads into it, Law & Order: SVU

Ironside retained 99.7% of the total-viewer lead-in from SVU, during its season debut night.

That retention didn't quite continue in successive weeks, however, as the most recent episode, which aired on Wednesday, drew 4.8 million viewers and a 1.0 rating. Those aren't necessarily terrible numbers... if you're a cable TV network, that is. But when you're NBC, and you're in a distant 3rd place behind CBS (9.45 million) and ABC (5.76 million) during the Wednesday 10pm hour (when Ironside airs), it's just not a good look.

Repeating what I've said previously, this is a new series that I didn't think would last more than 1 season, and expected that it might not even last through the whole first season, given how anxious networks have become when new shows aren't performing as strongly as hoped for - especially when compared to the competition - and how quick they are to cancel said shows.

Having watched all 3 episodes that did air, from my POV, there's really nothing all-that special about this Ironside reboot that makes it stand out from all the other cop shows on TV currently, and in recent years - other than the fact that the title character is black, as played by Blair Underwood. And that's just not quite enough, when you consider that it seems to be going for something far more gritty, rough and tumble, compared to the 1960s original that starred Raymond Burr, which it doesn't really succeed at, in a cop/detective/crime-solving TV series climate that includes much darker, more graphic, moodier material in the likes of Law & Order: SVU, the CSI franchise, and others.

NBC has unfortunately struck out in the new series department with black leads, over the last 3 or so seasons - remember Undercovers 3 years ago; Deception last season, and now we have Ironside

Underwood did co-star in another NBC series that was canceled after its first season - remember The Event? Just like that action-adventure series, Ironside is now history.

Via press release, NBC has announced it will debut Dick Wolf’s Chicago P.D. (the spin-off of Chicago Fire) in Ironside's timeslot - at 10 pm on Wednesdays, starting on January 8.

In the meantime, over the next 2 months, replacing Ironside in that 10pm slot, for November and December, NBC will air a string of original programming, including new episodes of DatelineSaturday Night Live holiday-themed specials, as well as holiday music specials starring Kelly Clarkson and Michael Buble.

Chicago P.D. will star Jason Beghe, Jon Seda, and Sophia Bush as Windy City cops. The show is a spinoff of NBC’s popular Tuesday night drama Chicago Fire, which continues to see significant ratings increases in its second season.

Blair Underwood's NBC reboot of 1960s/1970s crime drama series Ironside, co-starred, alongside Underwood, Spencer GrammerBrent SextonPablo SchreiberNeal Bledsoe, and Kenneth Choi.

The series is written and exec produced by Michael Caleo (Rescue MeThe Sopranos), and exec produced by David Semel, Teri WeinbergJohn Davis, and Jon Fox.

It's worth noting that, a year ago, Underwood signed what was then referred to as "a major development/talent holding deal" with NBC/Universal TV.

So expect that, under the above agreement, both sides will make another attempt, with another series, starring Underwood.

Preview: Norwegian actor with Down syndrome plays 'Detective Downs'

From Digital Journal:

Norwegian Director Bård Breien has made a film about a private detective with Down's Syndrome. Svein André Hofsø, the film's star, suffers from the condition and has recently won an award for his acting efforts. 
In the official trailer (in the link above with English sub-titles) we see Hofsø, dressed as all private eyes should be, in a trench coat, with a hat cocked over his eye and an enigmatic cigarette drooping from his lips. 
However, this is a different private detective — one that suffers from Down's Syndrome. Hofsø himself suffers from the condition, and plays the part perfectly. 
However, despite having the perfect appearance as a private eye, he lacks any cases, and a lady decides to help him in his quest. And what makes him different is the fact that he uses empathy to solve his cases.  
Jon Sopel of the BBC asked director Bård Breien how he got the idea for the film, which has caused huge interest abroad. Breien said: I was fed up with the usual detective routine. I said if I'm ever going to make a film about a detective, he's going to have Down's Syndrome.
The leading actor, 33-year-old Hofsø, had previously appeared in an amateur film made by his brother and sister and enjoyed acting. He then spent a year preparing for the part in Detective Downs, and his excellent performance has challenged viewers' assumptions about what Down's Syndrome people are actually capable of. Hofsø won an award for best actor in September at the Fantastic Fest film festival in Texas and says that if the film is a success, he may consider a film career. 
"We have no plans to make number two yet, but it is a good idea. If this film is going to be success, maybe," he said. Breien said: "A lot of people told me that it might end up on the bad taste side of it. It was a struggle to make him act so well that he became a beautiful main film character.
The film will premiere in Norway in November 2013.


Modeling dream comes true for Karrie Brown, teen with Down syndrome

From ABC News:

Karrie Brown has all the makings of a model: energy, enthusiasm and a smile that could melt stains off your sleeves. 

But it wasn't just those qualities that won the 17-year-old with Down syndrome a modeling gig with girls' fashion label Wet Seal. It was actually Karrie's mother, Sue, who posted photos of her daughter wearing the label's Plus line on a Facebook page she set up that helped make Karrie's modeling dream come true. 

Every day Sue would post a picture of Karrie in her favorite Wet Seal outfits -- pieces that Karrie said make her "fit in while standing out" -- hoping that they would attract the company's eye. 

It wasn't long before they did. The company first noticed the Facebook page after receiving a handful of requests via social media telling them about Karrie's desire to model for the company. 

"She immediately caught our attention," Wet Seal's Yasmin Ezaby told ABC News. "We then asked our fans to get Karrie's Facebook page to 10k likes and we would give her the trip of a lifetime. She exceeded this goal in two days." 

In fact, as of Saturday, the page is now up to nearly double that number of "likes." 

Wet Seal honored its pledge and flew Karrie and Sue on an all-expenses paid trip from their home in Collinsville, Ill., to Los Angeles, throwing in a trip to Disneyland along the way. 

Although Wet Seal runs an annual model search competition, it was the first time the company had done a special challenge focused on one individual. 

Throughout the shoot on Aug. 30, Karrie was "full of energy," Ezaby said. 

"She asked for Justin Bieber so she could sing and dance while shooting," she said. "It was loads of fun. She was a natural in front of the camera." 

It came as a wonderful shock to Karrie's mother. 

"She was really excited," Sue Brown said. "She was excited about getting her picture taken at Wet Seal and really excited about Disneyland but I think one of the most exciting things for her was getting to see her sister in LA, too. 

"She was so funny during the photo shoot because she said, 'Can I have a little Justin Bieber music please?' and they played it and she started dancing and laughing," she said. "Everyone said, 'How did she learn to move like that?'" 

Sue is now helping her daughter reach her new goal: to dance on television with Ellen DeGeneres.
Karrie's special photo shoot is set to be released on Wet Seal's website and social channels in the coming weeks.

Tuesday, October 15, 2013

GLAAD report: Twice as many characters with disabilities will appear on broadcast television this year as compared to last

From Disability Scoop. The full 2013 GLAAD report:

Twice as many characters with disabilities will appear on broadcast television this year as compared to last, a new report finds, though they still account for just 1 percent of those depicted.

Out of 796 characters appearing regularly on 109 scripted, prime-time shows this year on ABC, CBS, NBC, Fox and The CW, eight have disabilities, up from four last year.

The findings come from an annual analysis of diversity in television programing conducted by GLAAD, a media advocacy organization for the gay and lesbian community. The report looks at the number of characters representing various minority groups — including those with disabilities — on shows scheduled for the 2013-2014 television season, which just began.

Despite the increase, advocates lamented the fact that actors with disabilities are still rarely cast to play the parts that do exist, particularly on broadcast television.

“When it comes to broadcast television, characters with disabilities are mostly represented by the non-disability community, while casting for disability roles on cable television is certainly more progressive: at least half of all scripted characters on cable with disabilities are portrayed by performers with disabilities,” said Anita Hollander, chair of the actors’ union SAG-AFTRA’s National Performers with Disabilities Committee, in the report which her group helped GLAAD prepare.

Characters with disabilities who are expected to appear this season include Max Braverman who has Asperger’s syndrome and his mother who’s recovering from breast cancer on NBC’s “Parenthood,” characters on Fox’s “Glee” and NBC’s “Ironside” who use wheelchairs, a character with Parkinson’s disease on NBC’s “The Michael J. Fox Show,” a father who is blind on NBC’s “Growing Up Fisher” and characters using prosthetic legs on ABC’s “Grey’s Anatomy” and CBS’s “CSI: Crime Scene Investigation.”

As the percentage of characters with disabilities increased, the GLAAD report found that ethnic diversity on television has remained steady while there have been declines this year in representations of gender and sexual orientation on broadcast television.

“Overall, representation on prime-time broadcast television continues to not accurately reflect the diverse American population,” the report indicates.

Monday, October 14, 2013

Wheelchair (in)accessible: The story behind an app that maps obstacles for disabled people

From Time magazine:

A filmmaker with multiple sclerosis hopes an app he developed will help fellow wheelchair users make cities like New York more accessible.

For most people, meeting friends for dinner at a new restaurant, jumping into a taxi or going out for a shopping trip shouldn’t require too much advanced planning. Just show up and walk in.

But as Jason DaSilva discovered, these simple actions that he took for granted for the first 25 years of his life harbored hidden obstacles that made them nearly impossible to perform in a wheelchair.

Steps, narrow doorways, cracked sidewalks and impossibly long ramps were only some of the barriers he encountered as he tried to navigate New York City, where he lives, from a chair. Most of the subway system is out of reach, since not all stations have elevators. And not all taxis are equipped to load wheelchairs either.

Frustrated by his inability to move around as freely as he liked, DaSilva developed AXS Map — a crowdsourcing platform that allows people around the world to rate businesses for accessibility and, most important, to share that information. Because while the Americans With Disabilities Act (ADA), enacted by Congress in 1990, mandated that buildings and other facilities become more accessible to those with disabilities, DaSilva found huge variability in how well the law was executed. Beyond that, many buildings constructed before 1990 are exempt from the regulations. AXS Map isn’t intended to rate the extent to which a structure is ADA-compliant; it simply serves as a tool for people with mobility issues to find out which businesses in their community are actually accessible, and to what degree.

Launched in 2012 as a website and mobile Web app, AXS Map is powered by Google Maps. Both of the current iterations allow the user to rate several features of local businesses for accessibility, which are tallied into an overall star rating. Much like Yelp and other crowdsourcing platforms, the more data that users contribute, the more useful the app will become. Also like Yelp, with more ratings, the most positive or negative reviews are canceled out so users end up with a solid core of realistic reviews.

“I think it’s critically important that people like Jason are getting involved and creating change in their own right. It is the only way that this effort will be successful,” says Mark Perriello, president and CEO of the American Association of People With Disabilities. “You see a lot of innovation by people with disabilities … but the number of people who are participating and changing the future, changing their own future by changing society, is far too few.”

Instead of leaving the ratings for AXS Map up to specialists, DaSilva wanted members of the disabled community to inform and empower themselves, with the help of friends, family and neighbors, by pooling their evaluations of how accessible facilities really are. “I found that there was a lack of awareness in general around accessibility,” he says. “People without disabilities don’t realize all the challenges that we face, like is a restroom accessible, is there one small step outside a restaurant that would keep us from being able to get in? It kind of blows their minds when they start to realize all these little details. Opening up the ratings to the community is an attempt to bridge the gap between people living with mobility issues and the larger communities that we live in.”

Failure to adhere to ADA regulations can result in government injunctions, steep civil penalties and lawsuits. But while thorough, the law is complex and often difficult to apply in practice, resulting in the patchwork level of accessibility that DaSilva encountered. Initially, the Department of Justice offered free written advice to business owners who had questions about applying the law, but those letters ended in the mid-’90s. Since then, businesses rely on ADA consultants or lawyers, whose help can be costly, or free ADA-consulting services, which can be difficult to find. Building inspectors are tasked with making sure that state and local codes are followed, and states can request federal certification from the Department of Justice that these codes adhere to or exceed the requirements of ADA. But as DaSilva and others affected by disabilities have found, there can be variation in the extent to which these codes actually address accessibility. For example, the degree of steepness and length of a ramp can render it too challenging for someone in a manual wheelchair; a fraction of an inch on a door frame can make it too narrow for some chairs.

And when it comes to older structures, which are more common in cities in like New York, for example, the issues become even more challenging. “Those facilities have an obligation to remove barriers to the extent that the removal is readily achievable, and that is a multifactor analysis that takes into account the cost of the removal, the difficulty, the resources of the business and a host of other factors,” says Minh Vu, a partner at the legal firm Seyfarth Shaw and leader of its ADA Title III Specialty Practice Team. Additionally, as with any piece of legislation, enforcement is also a major issue.

For DaSilva, the app is his legacy for the disabled community. A documentary filmmaker in New York City, he was diagnosed with primary progressive multiple sclerosis, a rare, accelerated form of the neurological disorder, after he noticed that his walk began to change in 2005. With AXS Map, he hopes to help others like him to live as independently as they can. DaSilva and his wife Alice Cook, whom he met while developing the product, have started hosting Mapping Days across the U.S., bringing together volunteers from the community to map entire neighborhoods in AXS Map. And at the same time, they are raising awareness around accessibility. “The work I do, this app and the film, is about changing the face of disability. The civil rights movement, the gay and lesbian movement, even the feminist movement all gained traction. But for some reason, the disability movement kind of slowed down,” says DaSilva. “I’m trying to find a way to bring it back.”

Jason DaSilva’s documentary film, When I Walk, opens theatrically in New York City at IFC Center on Oct. 25 and in Los Angeles on Nov. 1.

Saturday, October 12, 2013

Q&A with Henry Evans, Silicon Valley robotics pioneer

From The San Jose Mercury News in California:

Henry Evans' kids in the back seat noticed it first. Their father (pictured), a Stanford MBA and the chief financial officer at a Silicon Valley software startup, was slurring his words as he drove the children to school along Page Mill Road.

"He said, 'I feel sick' and the kids were scared," recalled Henry's wife, Jane. "They thought he was going to drive off the road. He came back home and was hanging on to the walls, losing his equilibrium. He kept saying, 'I just need to sleep.'"

In the next few hours, Evans' life would change dramatically. Diagnosed with a strokelike brainstem disorder, the father of four was left mute and quadriplegic, his mental faculties fully intact, but able to move only one finger.

After years of therapy, Evans has thrived. Using a head-tracking device and a laser pointer to spell out words on a letter board, he has written a cookbook, launched a small winery that his wife tends to, and started working with researchers on using robots to help the severely disabled become more self-sufficient.

We spoke with Evans by email. His comments have been edited for length and clarity.

Q: Tell us about your experiences following your brainstem episode in 2002.
A: I woke up in the ICU, unable to speak or move. When I started to come to, I was on life support. My kids cried when they saw me. I remember Jane singing "Phantom of the Opera" songs to me, because she had heard that people in comas can often hear you. She noticed I was following along with my eyes. I soon realized they were all I could move. It took several months to comprehend what had actually happened, and about five years to decide my life was still worth living, due in no small part to Jane.

Q: Eventually, though, you learned to communicate without words.
A: I was trapped in my own body. All I could do initially was blink. I was not able to breathe on my own, and had a feeding tube up my nose. My brother Pete is an engineer and he made my first (letter) board based on something he read on the Internet. I would look at a group of letters and they would read them out. Two blinks was "yes," one was "no." That way we would slowly spell out each word I wanted to say, letter by letter.

Q: Tell us how you worked with students at Palo Alto High School to come up with the "Laserfinger."
A: I contacted an old friend, Chris Tacklind, and gave him a crude PowerPoint drawing of my idea, which I had laboriously made with my headtracker. Chris said it was a perfect project for the robotics team he was mentoring. Not only did the team design a very clever prototype, but they applied for, and won, a grant from MIT to build a working prototype, along with an invitation to present it at MIT. The team had designed and built two custom circuit boards, which allowed me to control anything electrical I could point the laser at. I demonstrated it by controlling a light and a doggy treat dispenser.

Q: How did you end up working with robots?
A: I caught a CNN interview of Georgia Tech professor Charlie Kemp showing research he'd done with (Menlo Park-based robotics firm) Willow Garage's PR2 robot, and I immediately imagined using it as a body surrogate. I emailed Willow Garage and Kemp shortly afterward, and for the next two years, they collaborated with me on using robots as body.

Q: Talk more about that collaboration.
A: I emailed them with my headtracker, and they loved the idea and we just started collaborating almost immediately. I came up with many of the general ideas and they did all of the engineering. "Robots for Humanity" is the name I came up with in 2007 to describe the efforts of everyone who was using technology to help me. It became most strongly associated with the robot project at Willow Garage and Kemp's Healthcare Robotics Lab at Georgia Tech.

Q: So, how have robots helped you become more self-sufficient?
A: We are still doing research, including using the robot in my house, so it's premature to say I regularly use the robot. Some of our successful projects include my directing the robot to scratch me, shave me, shave someone 3,000 miles away, open my refrigerator and fetch me a bottle, open a drawer to fetch a towel and use it to wipe my face, throw away trash, and pull up my blanket.

Q: How do you see robotics helping the severely disabled in the future?
A: The first fruit of our labor is a camera drone that will enable bedridden/paralyzed people to explore the world around them. It's not hard to imagine using robots in a few years to remotely monitor and even perform simple tasks for disabled/elderly people, in lieu of having human caregivers 100 percent of the time.

Wednesday, October 9, 2013

Florida mother selected to test Google Glass as way to shine light on son's autism

From The Ocala Star Banner in Florida:

Delsa Darline used video to help doctors diagnose her son as autistic at just 14 months old, and she hopes the emerging technology of Google Glass may help lead to new therapies for the growing number of children with the disorder.

When Rory was a baby, Darline noticed he had certain sensitivities that would cause him to cry in an alarming fashion. She began to take videos of him in various situations around their home in Ocala. The videos helped Darline communicate with her son's speech, occupational and physical therapists.

"Technology has been an incredibly valuable tool for us," she said, adding that she has always had a passion for helping other parents dealing with autistic children.

So when Darline heard Google was looking for "bold, creative individuals" to test and gauge how people would want to use its newest product, she leapt at the chance.

Google Glass is electronic eyewear that connects to a smartphone via Bluetooth. The device includes a camera, display, touchpad, battery and microphone, all built into a narrow frame that spans the face from ear to ear. Still in the development phase, the wearable computer is not expected to be available for purchase by consumers until late this year or early 2014.

Except, that is, to early "Glass Explorers," who were selected in a contest held through Google Plus and Twitter. Applicants explained, in 50 words or fewer, how they would use the device. They could include up to five photos and a 15-second video.

Darline knew right away what she would do with Google Glass, she said. Even though Rory "doesn't seem autistic to many people," she noted, he was diagnosed early — at 14 months — partly because of technology. She said there are varying levels of autism. Children who fall within the spectrum, she said, "may have trouble with social interactions, communication and behavior."

"And there is no cure. There is no direct way of therapy," she said. It can be difficult for parents as well as their children with autism.

"There is an extremely fine line between a meltdown and a tantrum," she said, explaining that a meltdown requires the child to be soothed, but a tantrum needs to be addressed as a behavioral issue.

As a board member for the Ocala Autism Support Network, Darline said she knew there was a need for support for other parents of autistic children locally and beyond. Google Glass, she said, would simply make it easier for her to capture "raw moments" that could help other parents distinguish between a meltdown and a tantrum, and to give them hope that there are many "positive moments," which should be celebrated.

Carmen Martinez, who also has a son, age 8, with autism, and who became connected with Darline through the Ocala Autism Support Network, said she feels it is extremely helpful to have the support and advice of other parents, especially with the use of video.

"I don't see autism as a disability. It's more of a 'challenge' that parents have to deal with," Martinez said. "It's hard to explain to doctors and other people what is going on with your child when, in the morning, they may have an unexpected meltdown and then in the afternoon they're just calm. Having videos is very helpful."

After submitting her entry to become a Google Glass Explorer, Darline soon was selected to become one of the nation's 8,000 developers. To ensure participation in the development/research project, Google required each developer to pay $1,500 for their Google Glasses. Darline said she found private sponsors to pay for hers.

Other Google Glass Explorers include surgeons, authors, skydivers, individuals with disabilities, and a wide variety of people from various walks of life. Darline said she chats online with other explorers through private explorer forums and completes a developer survey for Google every two months.

Darline said she uses Google Glass "as a mom" to help other parents, but because she wears the eyewear on a daily basis, she also acts as a spokesperson for the device itself.

To activate the device, Darline will speak in a natural voice, "OK Glass," and then she gives a voice command such as "Take a picture" or "Take a video." She can view a playback of pictures or video with the wearable technology, and can go online with the device and also make calls.

"Everybody is very interested in them," Darline said, noting she was surprised that people of the older generation seem more interested in the device than anyone else.

"I always let people try them out. It's important because there is a concern for privacy. Many people do hear incorrect information, but most people are excited to try them out," she said.

Darline noted that a light is displayed if she is taking a video or picture, so others know if she is recording while wearing the device. And certain features, such as facial recognition, are disabled. Besides, she said, the information accessed through Google Glass is the very same information accessible through a person's smartphone.

Some public places, such as casinos, have already banned Google Glass.

Darline said she feels Google Glass will change how the public uses technology, but she emphasized that Google is being very careful to make people feel comfortable with wearable technology.

"I'm proud of how Google is handling the development of this device, actually," she said.

In the meantime, she added, she is thrilled to help other parents and let them know, "You're not the only person going through this."

Darline is the only Google Glass Explorer in Marion County. There are a couple of others in Florida. For more information about Google Glass, visit

enry Winkler's children's book series, "Hank Zipzer," about boy with dyslexia, adapted for British TV series

From The Digital Spy:

Henry Winkler is to feature in a new children's show for CBBC.

The actor - best known for playing The Fonz on classic sitcom Happy Days - will appear in Hank Zipzer.

The 13-episode series is inspired by the book series Hank Zipzer: The World's Greatest Underachiever - co-written by Winkler and Lin Oliver.

The show will follow 12-year-old Henry 'Hank' Zipzer, a smart and resourceful boy with a unique perspective on the world.

Hank has dyslexia, and when problems arise, he deals with them in a way no-one else would - putting him on a direct collision course with his teachers and parents.

"The stories are inspired by the true life experiences of Henry Winkler and how he felt growing up with dyslexia," said Sue Nott, executive producer for CBBC.

"At CBBC, we try to reflect the lives of children back at them and Hank Zipzer shows that achievement comes in all shapes and sizes - and it's set to be very funny too!"

Hank Zipzer will shoot later this year for transmission in 2014.

Tuesday, October 8, 2013

NJ girl's story shines light on medical care gap for people with intellectual disabilities

From USA Today:

Five-year-old Amelia Rivera (picture) is thriving and growing, three months after getting a new kidney from her mother, Chrissy.

"She's more active; she moves around more, she's more vocal," says Chrissy Rivera, a 38-year-old high school English teacher from Stratford, N.J.

Husband Joe, a 41-year-old real estate agent, says: "She's getting bigger, she's getting stronger, she's more alert."

But the Riveras say they shudder to think what might have happened to their little girl by now if they had accepted the verdict of a doctor they met with in early 2012. They say that doctor, from a leading children's hospital, told them that even though Amelia's kidneys were failing, she was a bad candidate for a transplant – because she was "mentally retarded."

Amelia, who has a rare genetic condition called Wolf-Hirschhorn syndrome, does have intellectual disabilities, along with various physical problems. But the Riveras found it shocking and unacceptable that her mental capacity could determine whether she lived or died.

So Chrissy did something that turned Amelia's case into a cause: She went to a website usually seen only by others in the small Wolf-Hirschhorn community and wrote about that encounter at Children's Hospital of Philadelphia (CHOP). "I expected it to be seen by 10 or 20 people," Chrissy says. Instead, it went viral and inspired some 50,000 people to sign a petition at, demanding that the hospital allow the transplant. Newspaper stories and blog posts were written. Medical ethicists weighed in — and generally agreed that although transplant centers had to consider patients' overall health and ability to thrive, it wasn't right for anyone to be denied just because they had a mental handicap.

Within days, Chrissy says, several members of the Philadelphia hospital's ethics committee were in her living room. A few weeks later, the family and the hospital released a joint statement saying a transplant was under discussion. Hospital officials apologized for what had happened, while saying it was never their policy to deny transplants on the basis of intellectual ability.

Later, the family announced that Chrissy had qualified as Amelia's donor. The surgery was done July 3. The Riveras say they are very happy with the care Amelia has received. The family declined to discuss how the surgery was paid for.

In a statement Friday, the hospital said: "We appreciate the role the Riveras have played in helping us recognize opportunities for improvement and believe we are a better institution as a result. We look forward to providing Amelia and her family the very best of care long into the future."

But that happy ending does not mean that the fight Amelia inspired is over.

In the months since Amelia's story became public, Chrissy says, "a lot of people have reached out to us personally to share similar stories, to tell us heartbreaking stories of how their loved ones were denied simple medical care, dental care, eye glasses — because medical professionals felt that this person's quality of life wasn't good enough to get this care."

They say even before the transplant fight they often had to demand such basic care for Amelia. So they want to speak up now for others facing those barriers.

In that spirit, Chrissy Rivera recently went to New York City to speak at a dinner hosted by Special Olympics at the annual meeting of the Clinton Global Initiative.

"I don't have a concrete solution to change the stigma that exists in the medical community," she told that gathering.

According to a 2009 report from the federal Centers for Disease Control and Prevention, the health of people with intellectual disabilities has not been adequately studied, but existing research suggests they do get poorer health care and have poorer health than the rest of the population. Research compiled by Special Olympics suggests that the unwillingness of some doctors to treat people with such disabilities continues to play a role in the gap.

But Amelia's story already is making a difference, says Tim Shriver, chairman of the board and CEO of Special Olympics.

"It has awakened people who didn't see the issue before," he says. Her name has come up, he says, in meetings he's attended with medical leaders and government officials who want to address the problem. The gap exists partly because of a lack of training for medical professionals but also because of "old fashioned ignorance and stigma," he says.

"Chrissy is a hero," he says, for speaking up for her daughter and for others.

How long Amelia will continue to thrive is uncertain. She goes to a clinic once a week for a checkup and shows no sign of rejecting her new kidney — though her parents understand that it likely will fail some day. They have been told a typical transplanted kidney lasts 12 years. Luckily, they say, Joe also is a match for her. But Amelia does have other medical issues: She is not able to eat on her own, so she gets nourishment through a tube in her stomach; she also needs to take medications to prevent seizures and treat asthma. She is more vulnerable to infections than most people.
The life expectancy for people with Wolf-Hirschhorn syndrome today is unknown, but it is known that some individuals with the syndrome survive into their 30s, 40s and beyond, says the National Institute of Health's Office of Rare Diseases Research.

For now, Amelia's parents are focused on raising a little girl. Amelia is not yet healthy enough to go to school, but she works with a teacher and therapists at home. She enjoys bedtime stories from her two brothers, her parents say. She does not walk, but gets around a bit by rolling on the floor. She does not speak, but does communicate, Chrissy says: "She definitely lets us know when she is happy or unhappy."

Some children with Amelia's syndrome do eventually learn to walk and talk, but what developmental progress Amelia makes, on what timetable, is not a big worry, Chrissy says: "Amelia is going to write her own book; she is going to meet her own milestones when she is ready."

'60 Minutes'' shameful attack on disabled people

Op-ed from in the Los Angeles Times:

Is it possible for a major news organization to produce a story about the Social Security disability program without interviewing a single disabled person or disability advocate?

That's the experiment "60 Minutes" conducted Sunday. The result was predictably ghastly.

The news program's theme was that disability recipients are ripping off the taxpayer. Anchor Steve Kroft called the program "a secret welfare system... ravaged by waste and fraud." His chief source was Sen. Tom Coburn, an Oklahoma Republican with a documented hostility to Social Security. Coburn has a report on the disability program's purported flaws due out Monday. Good of "60 Minutes" to give him some free publicity.

Together Kroft and Coburn displayed a rank ignorance about the disability program: how it works, who the beneficiaries are, why it has grown. This is especially shocking because after a similarly overwrought and inaccurate "investigation" of disability aired on National Public Radio in March, numerous experts came forth to set the record straight. They included eight former Social Security commissioners, experienced analysts of the program, even the Social Security Administration's chief actuary, Steve Goss.

"60 Minutes" apparently talked to none of them.

At the top of the segment, Kroft observed that disability now serves "nearly 12 million Americans," up by about 20% in the last six years. Coburn asked, "Where'd all those disabled people come from?"

To begin with, 12 million people aren't collecting disability payments. The number as of the end of 2012 was 10.9 million, comprising 8.8 million disabled workers and about 2 million of their family members, mostly children.

The rolls have grown consistently since 1980, but even though Coburn professes to be dumbfounded why, there's no mystery. As Goss laid out the factors, they include a 41% increase in the total population aged 20-64. Then there's the demographic aging of America, which has increased the prevalence of disability by 38%. (In case Coburn, a physician, hasn't noticed, the older you get, the more vulnerable you are to injury and illness.) Then there's the entry of women into the workforce in large numbers, which has brought many of them under Social Security coverage for the first time.

Finally, there's the economy. When jobs are scarce, more people land on the disability rolls, but that's not about people treating it as an alternative welfare or unemployment program, as "60 Minutes" would have it.

The relationship between disability and unemployment is much more nuanced. As we explained in April, disabled people always have more difficulty finding jobs than others; when desk jobs disappear and all that's left are laborers' positions, the opportunities for the physically and mentally challenged shrink. A good economy allows more disabled persons to find gainful employment and stay off the rolls; in a bad economy that path isn't open.

The most pernicious lie told about the disability program is that it's easy to obtain benefits. "60 Minutes" repeated that lie. The truth is that disability standards are stringent, and they're applied stringently. Two-thirds of all applicants are initially denied, though 10% or so of all applicants win benefits on appeal. All in all, 41% of all applicants end up with checks. Sound easy to you?

"60 Minutes" interviewed two Social Security disability judges, Marilyn Zahm and Randall Frye, who seemed to say that standards are so loose almost anyone can score. That's curious. When they were interviewed in 2009 by Zahm's hometown newspaper, The Buffalo News, they said that standards were too tight -- "Every month, most judges see a case that should have been paid at the first level," Frye said then. (It would be interesting to see the "60 Minutes" outtakes.)

Much of the "60 Minutes" piece was devoted to exposing garden variety scams supposedly perpetrated by shyster disability lawyers, which apparently is Coburn's hobbyhorse. But that's not the true story of Social Security disability. This is a program that serves needy, aging and injured members of the workforce, paying a princely average of $1,130 a month.

The tragedy is that the disability program is underfunded, facing the exhaustion of its resources as soon as 2016. In the past, Congress has routinely remedied this funding crisis by transferring funds from Social Security's old-age program. But it has never acted to properly support the disability fund.

Stories like the "60 minutes" and NPR pieces perpetuate the false image of disability recipients as the undeserving poor, slackers and frauds. That will make it easier for wealthy lawmakers like Coburn to hack away at the program in its time of need.

"60 Minutes" used to stand for rigorous, honest reporting. What's happened to it?

'Breaking Bad's' R.J. Mitte talks disability, bullying and hope

From The Observer, the student-run, daily print and online newspaper serving Notre Dame and Saint Mary's.

Before R.J. Mitte’s Q&A session even ended, a line already stretched out of the Washington Hall theatre, down the stairs and almost out of the building, with everyone waiting for an opportunity to shake Mitte’s hand.

Best known for his role as Walter Jr. (or Flynn) of the Emmy-award-winning show “Breaking Bad,” Mitte came to campus Tuesday evening to discuss the effects of bullying as well as to advocate against cruelty toward the fellow man last night courtesy of SUB. Mitte expressed to students and all in attendance the true capability of humanity, of how he — as a man living with cerebral palsy — has fought to attain and remain in a position that few, disabled or otherwise, could ever hope to have.

Mitte talked about the popular series, which concluded Sunday evening, in addition to his anti-bullying message.

“I loved the finale. I thought it couldn’t have been any better. I really couldn’t … I think it ended perfectly. It ended the way it needed to end,” Mitte said.

However, anyone who watched the show knows that does not necessarily mean a series finale filled with a picture-perfect ending, where everyone lives a decent, modest life of simple happiness and innocence.

“This show was never going to have a happy ending. When you live in a world of violence, you come out to a world of violence. Once you start going down that slope, once you start getting in bed with these people, they won’t let you leave,” Mitte said.

Mitte is no stranger to violence. A victim of bullying ever since he was young, he had to endure the pain of having his feet stomped on and hand broken because of his cerebral palsy. Mitte insists that there are countless forms of bullying — be it physical, emotional, cyber, verbal or even the types that people will never see or hear about.

“When they do happen,” Mitte said, “people don’t realize the damaging effects — the long term effects — bullying has on people. Bullying only adds to what they’re dealing with on a daily basis. Eventually they’re going to retaliate. They’re not going to retaliate at the bully. They’re going to retaliate at the people they care about the most,” Mitte said.

However, Mitte understands that this is not an impossible problem to solve — people are available to help. Mitte considers himself lucky for having family and friends to go to battle with these bullying-victims. People are around that want to get involved.

Unfortunately, as Mitte says, for as many people who do want to get involved, there seem to be an alarmingly large number of people who will just watch.

“I remember, I was about 14 years old, and we were at a farmer’s market. This older woman, she fell, and these people were literally stepping over [her]. They wouldn’t help her out. She wasn’t asking for help, but she was lying down on the ground.” Mitte said.

Mitte was the lone person in the entire vicinity to take initiative; it was then, he says, that he realized that that was the world we lived in — where people will step over each other. People will not think about each other. And Mitte understands that this may be what people are inclined to do, to not do. Yet Mitte encourages people to be involved. Even if it may not be the easiest choice, Mitte implores people to get involved and offer their help.

“You see someone who’s getting picked on, that’s when you get involved,” Mitte said.

However, Mitte did not come to simply talk about sensitivity to those who may seem disabled; he also offered his wisdom on the capabilities of men and women, whether or not they are able-bodied. Mitte’s own battle has — and will continue to be — a life-long journey.

“I was 3 when I was diagnosed with my disability. I grew up dealing with OT (Occupational Therapy), speech therapy, all different types. Dealt with bullies, dealt with people telling me I wouldn’t amount to much — even my own father — and I’ve shown them. And at the end of the day, there’s one thing to remember; there’s another one. One more day, one more person trying to stop you, one more person trying to take what you have. The trick is to fight for what you believe in, to fight for what you have, to fight for who you surround yourself with,” Mitte said.

Mitte has fought hard, putting himself in a position to succeed, and cites his own drive and ambition as a reason for his success — a drive that is, according to him, characteristic of anyone with disabilities.

“People want to stand on their own two feet. It’s even more so with a disability. They’ve had so many people cutting them down, saying, ‘You can’t do this. Someone without a disability should be capable of 10 times more than someone with a disability. But the thing is, you see more people with a disability with lower options fighting for a better future. They actually are fighting to get what they need. Most people are not willing to fight for what they need,” Mitte said.

Mitte, however, has been fighting a continually long fight — for equality.

“Equality is the biggest fight. Disability, race, religion, no matter what it is: at the end of the day, equality is the biggest fight. Once you understand equality, once you have equality, there shouldn’t be any doubt. It’s one of those things that one problem can fix many,” Mitte said.

Mitte knows his fight isn’t going to end anytime soon, but he said it’s a fight worth fighting for, and it’s not one he’s going to give up on.

“Equality means respect. Respect is equality. When you have respect for people around you, without labeling, without seeing them as ‘the minority’: that’s equality. We all bleed the same blood. I’ve never seen a baby push someone away … Equality has been a fight for thousands of years. It will not be fixed over night. It will not be fixed by one voice. It will be fixed by thousands of voices. It will be fixed by multiple ideals, multiple people, multiple belief systems. That’s when we’ll have equality,” Mitte said.

As Mitte talked about these ideas and his hopes for the future — no matter how distant — a certain look in his eyes betrayed a wisdom and patient determination beyond his 21 years. No matter how long, no matter how distant — Mitte is willing to fight everyday.

Sunday, October 6, 2013

More colleges provide options for students with learning disabilities, autism spectrum disorder

From The AP:

As he sits in class at Eastern Michigan University, a flood of images streams from Tony Saylor's vibrant, creative mind down through his pen and onto paper.

Often, his doodling features the 9-year-old character Viper Girl who battles monsters with her pet fox Logan. Saylor, 22, (pictured) has even self-published three books of their adventures.

Saylor's professors didn't exactly welcome his constant drawing, but once he explained it was the only way he could hope to process their lectures — and even to stay awake — most let him continue.

For college students with autism and other learning disabilities, this is the kind of balancing act that takes place every day — accommodating a disability while also pushing beyond it toward normalcy and a degree, which is increasingly essential for finding a meaningful career.

But Saylor and a growing number like him are giving it a shot. Students who would once have languished at home, or in menial jobs, or struggled unsuccessfully in college, are finding a new range of options for support services to help.

"I knew I didn't want to work in the fast food industry my whole life," Saylor said, sitting at the kitchen table of his family's home in this Detroit suburb, where he lives while commuting to EMU. His mother, Angela Saylor, says a 3-year-old program at EMU that supports autistic students — a graduate student who works with the program attends all his classes with him — has been a godsend.

Such programs within traditional universities, offering supplemental support for additional tuition, are sprouting up around the country (Nova Southeastern University in Florida is among the schools starting one this fall). "The K&W Guide to College Programs for Students With Learning Disabilities or AD/HD" has grown steadily since its precursor was first published in 1991, and now lists 362 programs, the majority of them now comprehensive services.

Meanwhile, other parts of the landscape are also expanding. College disability service offices (whose help is usually free) are also improving. Care centers, often for-profit and unaffiliated with colleges, are popping up near campuses and offering supplementary support. Finally, institutions with a history of serving large numbers of students with learning disabilities are growing, some adding 4-year degrees.

"This is the best time ever for students who learn differently to go to college," said Brent Betit, a co-founder of Landmark College in Vermont, which opened in 1985 with a then-unique focus on such students and now has a range of competitors. Among those Betit mentioned: programs within the University of Arizona and Lynn University in Florida, plus Beacon College, also in Florida, which like Landmark has a comprehensive focus on students with disabilities.

"There are better programs available than at any time in history," Betit said. "I think that's in part because of the entrepreneurial nature of the United States. When there's a need out there, and a business market available, people respond."

But the new players also bring new challenges. Families who would once have struggled to find options struggle to choose among them. Some experts, meanwhile, are concerned about the growth of for-profit providers, sometimes charging $50,000 or more. There are also concerns some enrollment-hungry colleges themselves are starting these high-priced services to attract students with disabilities, but lack the expertise or financial commitment to offer what they truly need.

That's what happened to Saylor, who spent two miserable years at a design and technology-focused school in Flint before learning about EMU's new program from his sister, a student there.

"We were led to believe there was more support than there was" at the previous institution, said his mother, who found herself having to constantly help Tony from afar. Tony says simply: "It was horrible."

"There's really no standards" for such on-campus programs, said Jane Thierfeld Brown, a longtime educator in the field and author of three books, including a college guide for autism spectrum students. Some "are just seeing dollar signs."

Another problem: These highly personalized services are expensive. Unlike in K-12, there's no legal right to a free college education for disabled students. So far, the expanded options mostly benefit those who can afford to pay out of pocket.
A study last year in the journal Pediatrics found about one-third of young people with autism spectrum disorders attended college in the first six years after high school, and the numbers are certainly growing. About one in 88 children is diagnosed with a disability on the autism spectrum, according to the advocacy group Autism Speaks. More broadly, federal data show more than 700,000 U.S. undergraduates with some kind of disability, including cognitive and physical impairments, on college campuses (about 31 percent with specific learning disabilities and 18 percent with Attention Deficit Hyperactivity Disorder).

Virtually all colleges now enroll at least some students with learning disabilities — 56 percent have students with autism spectrum disorder and 79 percent with diagnosed ADHD.

But the transition from high school can be rough. Federal law requires K-12 schools to provide customized support that will help students succeed. College students enjoy a vaguer right to "reasonable accommodations" that requires less of institutions. And college students have to ask for their help — a challenge for many because poor self-advocacy skills are part of their condition.

As success stories, schools point to students like Katie Fernandez, who struggled desperately through high school in Connecticut with what was eventually diagnosed as an information processing disorder.
"I studied and studied and nothing was happening," she describes it.

Still, Fernandez cried when she first visited Dean College outside Boston, a school where the president estimates close to half of students arrive with either a diagnosed or undiagnosed learning disorder.

"I said, 'I'm not coming here, I'm not going to be labeled one of those special ed kids,'" Fernandez said.
But she did come, and after one semester felt at home. The prevalence of students facing similar challenges made for an accepting atmosphere. A supplementary academic coaching program helped, and while the coursework was all college-level, many classes were taught in small settings tailored to students' particular challenges.

The professors were also used to working with such students, and were familiar with the new technologies that are starting to transform teaching students with cognitive impairments (for Fernandez, one of the simpler ones was among the most helpful: a "pulse pen" that records audio as you write and lets students later sync their written notes and the teacher's accompanying words when they review).

In 2012, her senior year, Fernandez was retested. She was stunned by the results, and a little scared: She no longer showed a learning disability. That meant no more extended time on tests, which left her fearful for her upcoming GRE exams. But she was accepted into a graduate program in higher education administration and is now pursuing an advanced degree.

"I basically learned how to compensate for my weaknesses and my learning differences, which was the goal all along," she said.

Dean says about 75 percent of its associate's degree students persist to a degree at Dean or after transferring; the rate is slightly lower for bachelor's students. Landmark says roughly 80 percent persist to graduation there or elsewhere. Such figures are better than the national averages for all students. Experts say students with disabilities often take substantially longer than the traditional 4-year target, but they are remarkably persistent.

Still, there are no illusions the work is easy or success guaranteed. "College is not for everyone," says Dean's president, Paula Rooney. She recounts difficult conversations with parents up front about what's achievable. Still, she says, Dean is full of students on whom the system would once have given up.

Jim Meinen, a management consultant from North Oaks, Minn., whose 20-year-old son Will has struggled with ADHD since elementary school and now attends Landmark, says the family was "passionate about getting him a higher education."

"Our underpinning belief is any student, young adult with a learning difference, has potential," he said. But "we knew he would struggle as a mainstream student at most colleges" and chose Landmark for its tight safety net for students who struggle to advocate for themselves.

Will is starting his third year at Landmark, pursuing an associate's degree. The college is unrolling its first four-year program, and he may stay on. The goal, Meinen said, isn't a degree per se but a meaningful life. But, he added, a degree "increases the probability of a meaningful life. It opens up the options."

Tuition plus room and board at Dean runs close to $50,000, and the supplementary services can tack on another $7,000 or more. The college runs a handsome but no-frills campus, which Rooney says lets it give most students financial aid.

Betit, the Landmark co-founder, says there is also aid available but acknowledges his school (base tuition, room and board: $59,930) is among the handful of most expensive colleges in the country, and that low-income students are not yet fully benefiting from most of the expanded options nationally.

EMU's program charges its 12 students between $4,500 and $7,500 per semester, on top of regular tuition ($9,364 in-state). That appears to be within the common range for programs within traditional universities. In some places, state programs may help cover some costs.

Another option is for-profit programs that support students while they're enrolled in nearby institutions. One such program, College Living Experience, has six locations around the country. It charges $43,500 for its full program, which could include everything from intensive academic support to basic life and social skills training. Company president Stephanie Martin says the necessary help simply isn't available at many colleges.

"Many of the students who go to college who don't succeed, it's not because they can't do the academic work," she said. "It's the other aspects of their life that get in the way."

Still, Pamela Lemerand, director of clinical services at EMU's Autism Collaborative Center, says there are advantages to on-campus programs.

"We're in the fabric of the university," she said.

Educators in this field say they're hopeful, and their institutions, once deeply skeptical such students could succeed, are increasingly embracing their work. But they say it still requires painstaking one-on-one labor and extraordinary patience.

"Parents have expectations that A, B or C is going to happen in that order," said Julie Leblanc, director of the Morton Family Learning Center at Dean, and an alumna of the college. "We know in this business that sometimes it doesn't happen that way, and sometimes it's best it doesn't happen that way."

Every student is different, but the fundamental challenge is often the same. In high schools, many students come to rely on parents for everything from dressing themselves to packing lunch to making sure homework gets done. In college, the focus shifts to developing self-reliance — which sometimes means pushing them with tough love.

"I can say, 'What's it going to be like if you're 40 and still living with your mom?'" Lemerand says.

Tony Saylor isn't sure what the future holds. The immediate plan is to keep living at home. He admits his shyness and awkwardness have made it hard to make friends outside class. And he sounds like a lot of college students these days when he says he isn't sure what his degree (children's literature and theater) will offer him, only that he'll be better off than without it.

Angela Saylor says she's grateful for what EMU has offered, but knows how lucky she was to come across the program, and how hard it can be for others to find a good fit.

"I see more information becoming available," she said. But still, "given the statistics on the number of people being diagnosed with autism," she said, "they're going to have to come up with more options."