Dutch organization releases free guide about disability in sustainability reporting

Press release from GRI:

AMSTERDAM - GRI, the architect of the world’s most widely used sustainability reporting standard, and Fundación ONCE, the leading organization of the European Network for CSR and Disability (CSR+D), announce the launch of Disability in Sustainability Reporting, a guide to help organizations communicate their commitment to respecting and promoting the rights of people with disabilities.

“People with disabilities constitute the world’s largest minority group. To a large extent these individuals are marginalized in our societies, in particular when it comes to employment,” said GRI’s Chief Executive Michael Meehan. “Disability in Sustainability Reporting is designed to empower organizations’ understanding of what activities can have an impact on the rights of people with disabilities and which GRI disclosures can be used as the basis for reporting on those impacts.”

"This guide is a milestone for the integration of the issue of disability in sustainability reporting,” said Alberto Durán López, Executive Vice-President of Fundación ONCE.  “The publication is born from the collaboration of two leading organizations and is a clear example of creating shared value."

 

This unique guide can enhance organizational understanding of the value of transparency on disability, in terms of creating inclusive workplaces, as well as taking advantage of the business case of disability for the development of new products, services and physical environments. Additionally, the guide features a number of case studies from businesses all over the world that are making commitments and working to improve their disability related impacts. Disability in Sustainability Reporting is also the result of an inclusive and collaborative effort on the part of a number of disability experts, who provided feedback and support.

 

Over the course of 2015, GRI and Fundación ONCE will continue collaborating to provide additional support to organizations in communicating their commitments to respecting and promoting the rights of people with disabilities.

 

To download a copy of Disability in Sustainability Reporting in English click here or to download in Spanish click here.  A global webinar will be organized during the second quarter of 2015 to present the publication. To find out more please click here to sign up for GRI’s monthly newsletter. For additional information please contact Davion Ford, GRI Media Relations Manager (ford@globalreporting.org).

 

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About GRI
GRI is a non-profit organization working in the public interest towards a vision of a sustainable global economy where organizations manage their economic, environmental, social, and governance performance and impacts responsibly. Thousands of corporate and public sector reporters in over 90 countries use the GRI Guidelines. More than 22,000 reports have been registered in GRI’s Sustainability Disclosure Database and 25 countries and regions reference GRI in their policies. GRI’s activities are two-fold: firstly the provision of sustainability reporting guidelines and secondly, the development of engagement activities, products and partnerships to enhance the value of sustainability reporting for organizations.

 

About Fundación ONCE

The ONCE (the National Organization of the Spanish Blind) created the Fundación ONCE in 1988 to ensure quality of life and social inclusion of people with all kinds of disabilities and their families. The Fundación ONCE centers its efforts around two areas: training and employment, and universal accessibility of facilities, products and services, contributing to extend the concept of “design for all”. The work of the Fundación ONCE is directed by a Board of Trustees which, in addition to ONCE and the Foundation itself, represents the country’s main organizations of persons with disabilities. In 2013 the Fundación ONCE celebrated 25 years of existence, a period in which it has managed to generate over 80,000 jobs for people with disabilities.

People with invisible disabilities fight for understanding

From NPR:

Some disabilities are more obvious than others. Many are immediately apparent, especially if someone relies on a wheelchair or cane. But others — known as "invisible" disabilities — are not. People who live with them face particular challenges in the workplace and in their communities.

Carly Medosch, 33, (pictured) seems like any other young professional in the Washington, D.C. area — busy, with a light laugh and a quick smile. She doesn't look sick. But she has suffered from Crohn's disease, an inflammatory bowel condition, since she was 13. There have been times, she says, when she's "been laying on the floor in the bathroom, kind of thinking, 'Am I going to die? Should I jump out in front of traffic so that I can die?' Because you're just in so much pain."

More recently, she was diagnosed with fibromyalgia, a condition that leaves her in a state of full-body chronic pain and intense fatigue.

For Medosch and others who struggle with an invisible disability, occasional hospital stays and surgeries are not the hard part. Mundane, everyday activities can be more difficult.

"Washing my hair, blow-drying my hair, putting on makeup — those kind of activities can exhaust me very quickly," says Medosch. "So you kind of blow-dry your hair and then you sort of sit down for a little bit."
Walking to the subway or even bending down to pick something up can take a lot out of her. But that isn't apparent from the outside.

"I kind of call it being able to pass," she says. "So I can pass as a normal, healthy, average person, which is great and definitely helps ease my everyday life — especially in interactions with strangers, getting your foot in the door in a situation like a job interview."

It is hard to pinpoint the number of Americans with an invisible disability, but it's estimated there are millions. Their conditions may range from lupus to bipolar disorder or diabetes. The severity of each person's condition varies, and the fear of stigma means that people often prefer not to talk about their illnesses.

But in employment disability discrimination charges filed with the Equal Employment Opportunity Commission between 2005 and 2010, the most commonly cited conditions were invisible ones, according to analysis by researchers at Cornell University's Employment and Disability Institute.

"You know, it's that invisible nature of an illness that people don't understand," says Wayne Connell, the founder and head of the Invisible Disabilities Association. He started the group after his wife was diagnosed with Lyme disease and multiple sclerosis.

"We'd park in disabled parking and she didn't use a wheelchair or a cane, and so people would always give us dirty looks and scream at us," he recalls.

"When they see someone in a wheelchair, OK, they get that they're in a wheelchair. But what if they have chronic pain, what if they have PTSD — anything from cancer to peripheral neuropathy to autism?"

Medosch has had similar experiences with her handicapped parking tags. She also says that she faced challenges obtaining accommodations from a prospective employer.

Joyce Smithey, a lawyer who specializes in labor and employment, says that's not uncommon. When people with invisible disabilities request accommodations, Smithey says, some employers respond, "We don't do that as a policy."

"And that's a problem," Smithey says. "Because that person is not asking to partake of a benefit that's offered in a policy; that person is asking for an accommodation they're entitled to under the law."

When a disability isn't immediately obvious, others — at work, school or even at home — sometimes doubt it exists and accuse those who suffer from invisible conditions of simply angling for special treatment.

Medosch says she's comfortable being vocal about her disability now because she's well protected at her current job. She hopes discussing her own experience will help boost understanding, but acknowledges invisible disability can be hard to fathom — especially when so many people who live with it seem, outwardly, at least, to be just like everyone else.

Finland's disabled rockers PKN earn Eurovision semi-final spot

From Hurriyet Daily News:

Middle-aged rock band PKN has won the spot to represent Finland at the Eurovision Song Contest after TV viewers strongly backed the rockers with learning disabilities.
      
Their entry song -- a rowdy tirade against the numbing nature of daily chores that clocks only 87 seconds -- earned just 10 percent of the jury vote but soared to 37 percent once viewers had their say, comfortably beating tastemaker favourites Satin Circus, Finnish public broadcaster Yle said.
      
After winning the Finnish qualifiers on Saturday night, the band now heads for the semi-finals in Austria.
      
"We'll do it the same way in Vienna. One shouldn't fix something that's not broken," the band told Yle.
      
PKN, short for Pertti Kurikka's Nameday after its frontman, formed in 2009 during an artistic workshop for people with disabilities and have since toured Europe and the United States.
      
The rockers with an attitude caught international attention with a 2012 documentary that followed the band with learning disabilities on tour.
      
"Every person with a disability ought to be braver," vocalist Kari Aalto told Yle on Saturday.
      
"He or she should themselves say what they want and do not want. Those who work with us ought to know that if we say something, it's what we want," he added.
      
In 2006, Finnish heavy metal band Lordi became the first hard-rock contestants to win the Eurovision.
      
Last year's Eurovision final was won by "bearded lady" Conchita Wurst, an Austrian diva with a lush black beard and never-ending eyelashes.
      
Vienna will now host the Eurovision semi-finals on May 19 and 21 before the final on May 23.

In Canada, quadruple amputee Daniel Ennett hosts own adventure TV show

From CBC in Canada:

Daniel Ennett, pictured, has scaled mountains, explored underwater and felt what it’s like to dance.

All without arms or legs.

The quadruple amputee is now on an uncharted adventure. He’s the host of a new television show called Invincible, highlighting achievements of disabled men and women in Edmonton.

The experience has been a revelation, even for Ennett, who routinely overcomes challenges as part of daily life.

“I wasn’t really aware of a lot of things that are available to me,” says Ennett, 21. "Just the sheer amount of things disabled people can have access to.”

Ennett was five when he contracted meningitis and lost all of his limbs. Meningitis is caused by a virus or bacterial infection that inflames the lining around the brain and spinal cord. In some cases it can be fatal.

The television show has given Ennett another opportunity to test his capabilities. Even activities not considered high-risk adventure sports are now part of his life.

“I never thought I’d be curling, but now I curl regularly at the Saville Centre."

Show producer Frederick Kroetsch says he has big plans for future episodes, and for Ennett.

“We format it as an international travel adventure show,” says Kroetsch. “I want to see Daniel climb Mount Kilimanjaro and dive with sharks.”

Ennett says he’s willing to try just about anything, but that thing with sharks might not be on the list, though he’s not ruling it out just yet.

“I’m always skeptical. How are we going to do this? And they always end up having some kind of contraption, or eight people to come and help me do it.”

“People are usually anxious for me. I try to bring them down a notch to try to keep it level-headed, people panicking about me drowning.”

The show Invincible is available on Telus TV and Youtube.

White House deaf staffer Leah Katz-Hernandez is a pioneer on the reception desk

From Fox News:

In the West Wing of the White House, Leah Katz-Hernandez communicates with the first couple in a way that few others, even the president’s most trusted advisers, ever do.
Katz-Hernandez, who is deaf, is the new receptionist of the United States, or what those in Washington like to abbreviate as ROTUS (a play on POTUS – president of the United States). She grew bicoastal, raised by a Jewish mother and a Mexican-American father in Connecticut, frequently visiting her father’s family in California.

After working in the Chicago headquarters of Obama’s re-election campaign, she moved to Washington, D.C., and was hired as an assistant in the first lady’s office.

“It was my first week on the job,” Katz-Hernandez, 27, told Fox News Latino. “I was having lunch at my desk when a staffer from the West Wing came by and said, ‘I want to introduce you to the First Lady.’ The next thing I know the First Lady is standing in front of me. She said, ‘Hi, my name is…’ and then she finger-spelled her name. It was really a wonderful moment. I knew I’d arrived in a great place and felt really motivated to work hard for her.”

In her new job as ROTUS, Katz-Hernandez gets to welcome all of the president’s guests to the West Wing. “I make sure that everyone is happy, and everyone feels welcome and has a nice experience when they come into the West Wing lobby,” Hernandez said through a sign-language translator. “I also manage the Roosevelt Room and Ward Room, as well – you know, managing the relationship with the Kennedy Center with regards to the president’s box.”

At the White House, Katz-Hernandez has access to an interpreter to help her do her job.

“The White House is really a model for accessibility for people with disabilities – and especially for deaf people,” she said. “I believe my story sends a good message about the abilities of people who are deaf and Latino to be successful anywhere."

Her first two weeks as ROTUS were a whirlwind. “Already I’ve had so many opportunities to meet people in the West Wing lobby,” Katz-Hernandez said. “It is inspiring to see the mix of ordinary Americans and powerful people coming in to see the president.”

“During my first week when 'Humans of New York' photographer Brandon Stanton” – who started a fund to try to raise money for Motts Hall Bridges Academy in Brooklyn –“came in with Vidal [Chastanet] and his principal, [Nadia] Lopez, I saw American people doing good work and making an impact. Just days later, I saw Chancellor Merkel of Germany come in for the bilateral meetings. Seeing the president with Chancellor Merkel – the two of them together – was really humbling. I felt honored to be there in the West Wing when world leaders meet.”

Katz-Hernandez puts her father at the top of the list of people who inspire her.

“My father was born in California, in the Los Angeles area. He grew up on horse ranches. He worked hard, put himself through college, and earned his PhD. He’s always taught me it’s very important to give back to your community,” she said.

After studying government at Gallaudet University in Washington, D.C., Katz-Hernandez’s passion for public service led her to join Obama’s 2012 re-election campaign. It was at campaign headquarters in Chicago that she first met her future boss.

“The room was chock-full of staff,” she recalled. “The president walked in, and, as he walked by me, I thanked him. He signed, ‘Thank you’ back.”

Asked if she has been able to teach Obama any other signs working while closely in the West Wing, Katz-Hernandez laughed.

“No, I haven’t really had a chance to sign with him yet … but then again I’ve only been on the job for two weeks.”

Disabled actress Shannon DeVido cast in Amy Poehler project, 'Difficult People'

From New Mobility:

Comedian Shannon DeVido’s star has been on the rise since a February appearance on the Nightly Show with Larry Wilmore and landing a role on the upcoming Hulu original series Difficult People, produced by Amy Poehler.

Joining the cast of Difficult People has been the biggest break in
 DeVido’s career. “It’s a really cool opportunity and I’m very grateful that they did think outside the box,” says DeVido, who has spinal muscular atrophy. In Difficult People, DeVido, 32, plays a strange hipster storyteller who is made fun of by series co-stars Juile Klausner and Billy Eichner. Filming for the series is underway, but Hulu hasn’t yet set a premiere date.

DeVido grew up in Holland, Pa., and attended Middle Tennessee State in Nashville. During college, she played Yenta in the production of Fiddler on the Roof. “I got to be the really funny character who was the comic relief in a very dramatic show,” she says. DeVido enjoyed the comedic role and it led her to join the Philadelphia-based improv group, King Friday, five years ago. The group disbanded in 2012. She also performs with the improve groups Wussy Riot, Hell on Wheels and Axis of Evil.

Improv acting is a passion for DeVido. “I love doing improv mainly because I get to do it with other people who make me better and make me excited to be on stage,” she says. The camaraderie of being around other comics sparks DeVido’s creativity. “These people I get to play with on a regular basis are so brilliant and so funny and make me want to be funnier,” she says.

One of her most creative comedic ventures has been the Youtube Web series, Stare at Shannon. The ongoing series puts DeVido in hilarious situations like driving her wheelchair through the drive-thru or learning the intricacies of roller derby. “I have so much fun doing it and I’m very grateful that my friends are as weird as I am and will come along for the ride,” she says.

DeVido’s comedy often takes dead aim at the stereotypes surrounding disability. Her audiences appreciate she’s doing something different but it takes them time to become comfortable laughing. “There is always that tension because as a society people are scared to laugh at disability,” she says.

Harvard and MIT sued for neglecting people with disabilities in online courses

from The Verge: (Pictured is an example of incorrect auto-captioning on a Harvard YouTube channel.)

The National Association of the Deaf (NAD) is filing lawsuits against both Harvard and MIT for failing to provide adequate captions for their online educational material. The complaints allege that both universities have "denied access to this content to the approximately 48 million — nearly one out of five — Americans who are deaf or hard of hearing," and that in doing so have violated federal law.

"If you are a hearing person, you are welcomed into a world of lifelong learning through access to a community offering videos on virtually any topic imaginable, from climate change to world history or the arts," said Arlene Mayerson, one of the lawyers taking the case against MIT. "No captions is like no ramp for people in wheelchairs or signs stating ‘people with disabilities are not welcome.'"

Both suits cover material including podcasts and online lectures, with the complaints stating that the content is "either not captioned or is inaccurately or unintelligibly captioned, making it inaccessible for individuals who are deaf or hard of hearing." However, some of the lawsuits' accusations may be misguided. Examples of bad captioning cited by the NAD are actually produced by YouTube's automatic captioning system, not by Harvard or MIT.


Christine Griffin, a co-counsel on the case and a director of the Disability Law Center in Boston, tells The Verge that this was immaterial. Harvard and MIT were both contacted multiple times about these and other problems, says Griffin, and that even if YouTube was directly responsible for these particular examples, it is the universities themselves that "have the ability and authority to make sure what gets posted is captioned and captioned accurately."

A spokesperson for Harvard told The New York Times that the university would not comment on the case but that it was waiting for the Justice Department this year to "provide much-needed guidance in this area." A spokesperson for MIT meanwhile said that the university was committed to making its online material accessible and would be providing captioning in all its most popular courses and new material.

If the lawsuits are successful, however, the outcome wouldn't just affect Americans, but deaf people around the world. Harvard and MIT are both founding members of edX, a nonprofit and open source platform for massive open online courses (MOOCs). Courses hosted on edX are available anywhere with internet access — and the same is true for the material that Harvard and MIT have posted to YouTube and iTunesU.

"The main issue here is simply equal access," said Griffin. "The laws we're saying these universities violate are not recent laws. They were passed twenty to forty years go. [Harvard and MIT] take millions and millions and millions of dollars of federal money and deaf people pay those taxes too."

'American Horror Story' actress Jamie Brewer becomes first model with Down syndrome to walk the runway at Fashion Week

From The Today Show:

When Jamie Brewer strides down the catwalk during New York Fashion Week, she'll not only be showing off an original design by Carrie Hammer, but she will also become the first woman with Down syndrome to grace the runway.

“Young girls and even young women … [see me] and say ‘hey, if she can do it so can I,’” says Brewer, an actress known for her work on “American Horror Story” and an advocate for people with intellectual disabilities. “It’s a true inspiration being a role model for any young women to [encourage them] in being who they are and showing who they are.”

Brewer is modeling as part of Hammer’s “Role Models Not Runway Models,” a campaign the designer started when she was first asked to show her line at Fashion Week a year ago. Hammer wanted to represent the women who bought her designs and realized that featuring her clients—leaders of multibillion dollar businesses, heads of global nonprofits, pioneers of cutting-edge research, and women who just rock—would do exactly that. For her first show, she invited her friend, Danielle Sheypuk, who uses a wheelchair, to be a model.

“I called up my existing clients who were all incredible women and one of them happened to be a doctor and a sex therapist who happened to be in wheelchair,” Hammer told TODAY.com. “It was never intended to be this incredible statement.”

But it was. Hundreds of women and girls contacted Hammer to thank her. One email stuck out: Every time Hammer read it, she cried. It was from Katie Driscoll, co-founder of Changing the Face of Beauty, a nonprofit that encourages media to include people with disabilities. She wrote: “Thank you for being the change that is long overdue. I could literally cry every time I read an article talking about your decision to include a model who just happens to have a disability! YOU are what this world needed!”

Driscoll’s daughter Grace was born with Down syndrome. After sharing her story with Hammer, Driscoll asked a favor.

“She asked if I would have a role model for Grace,” Hammer says.

“Role Models Not Runway Models” took off, and Hammer received hundreds of nominations for women to model in her shows—including one from Karen Crespo, who lost her limbs to bacterial meningitis and longed to walk the runway to boost her self esteem. She appeared in Hammer’s fall Fashion Week show. But the designer didn’t forget about Grace. She asked Driscoll to suggest a good role model, and the mom immediately named Brewer.

“I explained to her how important it is for my daughter to have role models like [Brewer] to see that [anything] is possible,” says Driscoll.

While most recognize Brewer for playing Addie in “American Horror Story: Murder House,” Nan in “American Horror Story: Coven,” and Marjorie in “American Horror Story: Freak Show,” she has long worked as an advocate for people with intellectual disabilities. At 19, she was elected to the State of Texas ARC Board; she also worked on the Executive Board for the State of Texas ARC and the Governmental Affairs Committee for the State of Texas, where she was the only member with a disability.

“Jamie is an activist for intellectual disabilities, she is a writer and artist and amazing actress,” says Hammer.
Hammer designed a dress that she hopes plays up Brewer’s fabulous qualities.

“‘American Horror Story’ is dark, scary, bewitching so we had to go with black and Jamie has a beautiful body with a teeny waist and curves and we went with an A-line,” she says. The dress is also special for another reason—Hammer hopes that First Lady Michelle Obama will wear it.

For her part, Brewer feels excited for her spin down the runway.

“It’s amazing, it’s really neat. Many women have many sides to their personality, this dress fits...mine,” she says. “I am honored to be in it.”

'My Kitchen Rules' in Australia: Does reality TV do a better job of depicting people with disability?

From Daily Life in Australia, by Carly Findlay:

Like most reality TV addicts of Australia, I'll be tuning in to the new season of 'My Kitchen Rules' tonight – for the cooking, the snark, and perhaps most of all for Emilie -- a Queensland contestant with a disability. (On the right in the picture.)

Emilie has been deaf since birth. She says she has no hearing in her left ear and wears a hearing aid in her right. She is candid about her deafness on the show's preview, laughing at the way punters talk to her and the way some people bizarrely dumb down their language.

On her disability, her sister Sheri jokes that her only concern is that Emilie's critique of other contestant's food won't be anything near discreet: 'On the show, when they're whispering to each other, I don't think I'll be able to do that because Emilie's going to be like, (shouts) 'It tastes like s--t Sheri.'" 

I am excited that Emilie's place on the show will help raise awareness and break down stereotypes and misconceptions about disability, and viewers will be able to get to know Emilie's personality and skills. I am hoping that viewers will take what they've learnt about disability on reality TV into the community.

Indeed, Emilie is not the first reality TV contestant with a disability.  From X Factor Australia's Emmanuel Kelly to MasterChef Australia's John in 2011, my friends who are reality TV devotees recently provided me with an extensive list of Australian and international contestants with disabilities.

Could it be that there is a greater representation of disability in reality TV than on scripted TV shows, news and entertainment broadcasting?

Emma Ashton, editor of popular blog Reality Ravings, seems to think so. "Reality TV has always been at the forefront in showcasing diversity in their shows then drama, and this includes casting of people with disabilities", she says.

"It should also be noted that because of diverse casting on reality shows and seeing the viewing public embrace this has filtered across to casting of scripted shows.

"Even though it would be great to see Australian reality TV producers cast more people with a disability, they are streets ahead of their fictional colleagues", says Ashton.

That said, it's important to pay attention to the framing of the story – where the shows feature pity narratives encouraging viewers to feel sorry for disabled contestants. And we should call these out.  Ashton also warns of stunt casting – where contestants are cast for rating's sake.

 "There were criticisms about a UK show Britain's Missing Top Model, a reality show where each model had a disability", says Ashton. Some people said it was making a "spectacle" of people with a disability. However once it screened this criticism died down."

Contestants with a disability may also face cynicism and ridicule from judges, as revealed by former Australian Idol judge Ian "Dicko" Dickson on ABC2's Story Club  recently. Dickson, known for ridiculing many contestants on the show, revealed that he was not sure how to react to Quentin Kenihan's appearance on Australian Idol in 2003. "What did the reality TV arsehole manual say about dealing with a metre high contestant in a wheelchair?" asked Dickson.

There is also an additional platform for contestants to endure ridicule from. Viewers watch TV and simultaneously discuss it on social media. The comments can be vile – with viewers not shy in dishing out personal attacks on the contestants. But there is the equal potential for the second screen to enable viewers to comment beyond the disability narrative, and call out pity stories and personal attacks from other viewers.

The potential for ridicule from judges, fellow contestants and viewers is one reason Parkinson's disease patient and activist Alicia Friday Wright  won't audition for reality TV. "I will never do reality TV no matter how much exposure it will give to Parkinson's or disabilities," says Wright.

"They will never tell the story my way, with the respect and dignity it deserves. It will just be sensationalised and there's no educational value in that."

Disability activist Jax Jacki Brown believes it's important that reality TV producers focus on more than just the contestants' disabilities. "Diversity representation in all its forms in the media is really important because it people to see experiences outside their own and for stereotypical views people may hold to be challenged", says Brown.

"This is true of people with disability were often when we see disability in the media it is depicted in particular ways: as a tragedy, or as brave, courageous or inspirational, when really, like anyone our lives are much more complex than that."

Notable reality TV contestants with a disability:

• Emmanuel Kelly from X Factor Australia 2011 was born without hands or feet.
• John from MasterChef Australia in 2011 has cerebral palsy (he told me in a previous interview that he wanted to be treated like every other contestant http://www.divine.vic.gov.au/lifestyle/food-and-going-out/masterchef-disability).
• Katrina Chambers from The Block Australia 2011 has Crohn's disease.
• Rachael Leahcar from The Voice Australia 2012 is blind.
• Gemma KingHorn from Big Brother Australia 2014 has Marfan's syndrome – a condition affecting her height.
• Sam Brahman from Big Brother Australia 2014 was born missing part of his leg.
• Charla Baklayan Faddoul from The Amazing Race USA was born with achondroplasia.
• Christine Ha from MasterChef USA 2012 is blind. She won season three and is now a restauranteur.
• Andrea Begley won The Voice UK in 2013 - she is partially sighted as a result of glaucoma.
• Sarah Herron from The Bachelor USA 2014 was born with one arm.

Tobin Siebers, University of Michigan English professor, Disability Studies scholar, dies

from the University of Michigan:

Tobin Siebers, co-chair of the university's Initiative on Disability Studies, V. L. Parrington Collegiate Professor, and professor of English language and literature, and art and design died Thursday.

"We have lost a great champion for disability studies at our university, in the wider U.S. academic ecology, and in the development of our discipline worldwide," said Petra Kuppers, professor of English language and literature, and women's studies, LSA; professor of art, Penny W. Stamps School of Art & Design; and professor of theatre and drama, School of Music, Theatre & Dance; and co-chair of the Initiative on Disability Studies.

"Tobin has been a field-builder, a mover and shaker, and a tireless advocate for a discipline that developed under his and his peers’ guidance."

Two of his recent books, "Disability Aesthetics" and "Disability Theory," have become field defining, and can be found on reading lists around the world. They present perspectives on disability’s cultural labor: how disability appears in art, architecture, literature; how its presence and relational web compels new insights into cultures, writing, and experience; and how criticism can offer readers tools for thinking anew about bodies in public space.

One of Siebers' first entries into the new canon of disability studies was his non-fiction book "Among Men," about what it meant to grow up into a disabled man, lover and father.

"I have learned so much from my generous colleague and friend," Kuppers said. "I had the great fortune to work with him as co-chair of our initiative, and as co-teacher in our graduate classroom.

"His influence is everywhere: countless scholars in our field have been mentored by him, and he has validated so many of us in our shared quest to focus on disability as a rich and exciting field of inquiry. His legacy lives on in his nourishing critical perspective, his passion and presence, and it will continue to thrive and grow in the thoughts his writings allow us to spin out.

"Disability Studies lives both inside and outside the university, and Tobin was always aware of multiple audiences, and of the need to think capaciously about sources of knowledge and wisdom. Whatever your personal relation to academic writing, I encourage you to re-read or read some of Tobin’s moving and powerful work, and to take a moment to remember him and his spirit through his lines."

In 2009, the Council for Disability Concerns presented Siebers with the James T. Neubacher Award in recognition of extraordinary leadership and service in support of the disability community.

There will be a memorial service for Siebers followed by a reception at 2 p.m. Feb. 6 in the Michigan League Ballroom. The public is welcome.

Before the memorial service, from 10 a.m.-1 p.m., Siebers will be honored at the UMInDS Symposium on Disability Studies, and at the final sharing of the international, national and local disability culture artists who are coming together in the Duderstadt Video Studio on North Campus.

Sundance panel urges equality for people with disabilities in entertainment industry

From KUTV in Utah:

A special panel at the Sundance Film Festival on Sunday urged equality for disabled people in the entertainment industry.

Several Hollywood stars, including R.J. Mitte of "Breaking Bad," who has cerebral palsy, Paralympic athlete Amy Purdy, and TV personality Montel Williams attended the event.

“What Hollywood should be doing right now is reflecting society. It’s great that is a good story, but in bedrooms and houses across the country there are so many people who don’t see anybody who looks like them,” Williams said.

Speakers discussed the underrepresentation of people with disabilities in media. Shriners Hospital for Children sponsored the event and claimed that of the 800 roles on TV shows, only 11 went to actors with disabilities.

Speakers at the event encouraged anyone with a disability not to be afraid to pursue their dreams.

“Don’t stop dreaming and believing. Whether you want to become an actor or be in the entertainment industry, or do anything else in life…just because of what has happened to you doesn’t mean you can’t accomplish that. You will do it differently than another person, but you can still do it,” actor J.R. Martinez said.

iPad app brings Braille keyboard to blind users’ fingertips

From Wired magazine:

The proliferation of touchscreen technology may have revolutionized mobile computer input for most everyone, but there’s one sector of the population that isn’t exactly feeling the pinch, the tap, or the swipe: the blind. It’s nearly impossible to interact with elements on a totally smooth screen if you can’t see.
iBrailler Notes, which began as a summer project at Stanford University in 2011 and is now available as a stand-alone app for iOS, aims to offer blind and vision-impaired iPad users an easy way to type Braille notes and perform basic word processing on a touchscreen.

iBrailler isn’t the first to undertake this commercially. There are a variety of apps designed for the sight-handicapped, ranging from camera applications that describe the content of an image aurally to other Braille-reading and writing apps. Add to these the numerous accessibility features Apple offers on iOS, most notably VoiceOver, which reads text aloud to sight-impaired users, and its Braille QWERTY keyboard.
What iBrailler does differently is position its touch keyboard underneath the user’s fingertips, no matter where they set them on the iPad’s slick glass display. Every time you lift and readjust your hands on the screen, the keyboard does too. The keyboard uses Braille English Grade 1, Grade 2, and Six-Dot Computer Braille, and features built-in gestures for tasks like cutting, copying, and pasting text.

More than 6.6 million Americans over the age of 16 are visually impaired, according to estimates by The National Federation of the Blind. Much of that number are able to use computers thanks to the tactile feedback of a keyboard, optionally with raised Braille lettering on top, or a refreshing Braille display.
But a refreshing Braille display can be very expensive—thousands of dollars per unit, according to Ed Summers, a blind computer scientist with business analytics software firm SAS. A Braille keyboard is very different from a QWERTY keyboard, he tells me: eight keys, one for each dot that can compose a Braille letter, and a “display,” a strip of 18 to 80 Braille cells, each housing eight tiny pins that raise to form a letter. Using this, a blind person can type on an iPad (or computer screen), moving the cursor around, reading text, correcting spelling. A small, 18-cell Braille keyboard can run around $1,800, while larger ones can cost in the realm of $6,000.

Sohan Dharmarajah, one of iBrailler Notes’ creators, wanted to offer the benefits of such a keyboard at a more affordable price. This iOS app is a free download from the App Store, and users can subscribe for a small monthly fee if they like the experience and want additional features.

Summers thinks that an app like this could be incredibly useful, particularly for students (he works with teachers of blind students in addition to his science work). Historically, he says, visually impaired students have had to use tools that make them stick out like a sore thumb in class.

“Now they can use an iPad and they’re the cool kid,” he says. “They have the coolest technology in the classroom.” Summers also notes that this keyboard app could allow blind users to type incredibly quickly.

The app’s creators aren’t entirely sure how big the Braille iPad-user market is—certainly a growing number are used in education, and since the iPad was completely accessible to the blind from the get-go thanks to VoiceOver, Apple fans of any sight ability have been able to use it just fine. But actually typing out thoughts with your fingers, rather than dictating with your voice, was still prohibitive.

Dharmarajah says feedback for iBrailler Notes thus far has been overwhelmingly positive; the app is being used actively at several blind schools and institutes in the United States and in Sri Lanka. An Android version is also in the works and should be available soon.

New movie filming in Georgia features autistic actors

From 11 Live in Georgia:

DECATUR, Ga. -- It's time for another take in another movie in a city that's quickly becoming a movie-making capitol.

And while this particular movie has all the stuff we associate with movies, the differences outweigh the similarities.

In the film, titled Circles, main character Ollie has autism. In real life, so does the actor who plays Ollie, 16-year-old Sam Seidel (pictured).

"This is my first real experience with it," Seidel said. "Yesterday was 11 hours. It was pretty tiring, but I still enjoy doing it."

Seidel was among more than 100 teens with autism who auditioned for the movie. Almost all the actors in the cast have autism.

"It was really important to me. It was something I wasn't willing to budge on," said director Jesse Cramer.
Cramer has acted and worked with kids with autism for years. He thought the two could blend beautifully, with cinematic success.

"I think it brings a level of authenticity that is unmatched," Cramer said. "They have a point of view that is so valuable. That makes an indelible difference in the final product."

It's a first for many, including members of the film crew flown in from Los Angeles.

"The entire crew keeps coming up to me and saying these actors are the best actors (they) ever worked with because they want to be here so badly," Cramer said.

In the movie, Ollie's best friend at school is moving away, and he has troubling expressing his feelings. He appears indifferent.

"He is unbelievably natural in front of the camera," Cramer said of Seidel. "He's dynamic. He has these huge pensive eyes, and he thinks about every scene, the subtext of every scene."

Through the movie, we learn that just because we can't see how someone feels, doesn't mean they don't feel.
"This character has emotions that run just as deep as anyone else, and he's fighting to tell the world what those are," Cramer said.

It's a simple message -- important to the boy behind the actor, who lives this every day: "That people with autism have feelings too."

But when asked about his favorite part of the movie making experience, he quickly said, "The food!"
And that's when he became just another hungry teenage boy.

"If this movie never airs, at least I had good food," he said.

Blindness simulations can harm people's attitudes toward blindness, University of Colorado-Boulder research finds

from Medical Xpress:

Using simulation to walk in the shoes of a person who is blind—such as wearing a blindfold while performing everyday tasks—has negative effects on people's perceptions of the visually impaired, according to a University of Colorado Boulder study.

"When people think about what it would be like to be blind, they take from their own brief and relatively superficial experience and imagine it would be really, really terrible and that they wouldn't be able to function well," said Arielle Silverman, who is lead author of the paper and blind. She conducted the research as part of her doctoral dissertation in CU-Boulder's Department of Psychology and Neuroscience and now is a postdoctoral researcher at the University of Washington in Seattle.

In one part of the study, after simulating blindness by having their eyes covered, participants believed people who are blind are less capable of work and independent living than did participants who simulated other impairments like amputation, or had no impairment.

In another part of the study, participants who were blindfolded said they would be less capable if they personally became blind and slower to adjust to their new world compared with study participants who weren't blindfolded.

The findings, published online in Social Psychological and Personality Science, demonstrate the self-centered nature with which people reflect on other's difficulties.

The findings also show that blindness simulations—typically meant to be bridge-builders resulting in compassion and understanding—can sometimes harm rather than help attitudes.

Silverman became interested in studying the effects of blindness simulations in part because of her own interactions with strangers enthusiastically wanting to help her navigate her way across a street, for example.

"I noticed and wondered why people who've never met a blind person before seem to intuitively have good attitudes toward blind people and people who tell me they have interacted with a blind person before tend to seem more condescending," she said.

Blindness simulations are often used to train teachers and professionals in other fields who are preparing to work with people with visual impairments.

There also are variations on blindness simulations—activities that are implemented with good intentions but that can exploit blindness, said Silverman. These include trust walks—typically used as a group bonding exercise—and blind cafes, where diners are blindfolded and dine in the dark.

More than 100 undergraduate CU-Boulder students participated in the study, some of whom were blindfolded and performed tasks like walking across a room or down a hallway; figuring out that a water pitcher they were given had a closed spout, opening it and then filling a glass as full as possible without overflowing; and sorting coins into groups of common denominations.

Afterward, all of the participants, some of whom were not blindfolded or had different impairments, completed questionnaires asking about their competency perceptions of blind people as well as themselves if they were to become blind.

Jason Gwinn, also a CU-Boulder doctoral student in psychology at the time of the study, and Leaf Van Boven, professor of psychology at CU-Boulder, co-authored the paper.

A blindness simulation that might improve people's attitudes would go further than the typical activity and teach people good strategies for adapting to blindness, said Silverman. Developing friendships with people with disabilities and in other underrepresented groups, perhaps through team-building exercises, also is a good strategy, she said.

Another important consideration when it comes to evaluating the effectiveness of simulations is the fact that the built world and social environments are not designed for people with disabilities.

"A lot of the disability that I experience has nothing to do with not being able to see," said Silverman. "Instead, it's because I can't access something like a poorly designed website, for example.

"So if there's a way for simulations to capture how much difficulty is caused by the social environment and the built world, this could improve attitudes and help people understand that those with disabilities are just as competent as they are."

Outcasting: Inside TV's revolution for transgender actors, disabled actors

From Rolling Stone magazine. Pictured are trans actor Erika Ervin and disabled actor Mat Fraser on "American Horror Story."

The most shocking, and remarkable, thing about today's television landscape is that nothing's shocking. Cable networks and streaming services have helped forge an era of unprecedented inclusion and representation in both content and casting. We turn on HBO and root for dwarf hero Tyrion as he topples bad guys on HBO's Game of Thrones, swoon while phocomelia-afflicted Paul stirs romantic intrigue on FX's American Horror Story: Freak Show, and tear up along with transgender inmate Sophia on Netflix's Orange Is the New Black. These characters aren't on screen to be mocked, gawked at or kicked around — at least not without a fight. But what makes them truly groundbreaking is that all three protagonists are portrayed by actors — Peter Dinklage, Mat Fraser and Laverne Cox, respectively — whose physicality mirrors that of their alter egos.

Without casually equating transgender performers and those with congenital disorders, these groups do share something in common (outside of vocal activist arms): Collectively, they're among the last segment of our society who haven't naturally integrated into mainstream pop culture, even after tremendous strides in less stereotypical storytelling. But thanks in part to providers who are willing to push the envelope through more equal-opportunity casting – call it "outcasting" – these individuals may finally have a place at the small-screen table that transcends narrow perceptions of gender identity or physical limitations.

"I would hope that this is that sea-change moment," says Adam Moore, national director of equal employment opportunities and diversity for Screen Actors Guild – American Federation of Television and Radio Artists (SAG – AFTRA). "There are positive signs that indicate that [if] we let this thing play out over the next several years, it will prove to be a turning point."

Statistically speaking, it's becomes more complicated for SAG-AFTRA or media-watchdog organizations like GLAAD to keep pace with shifting trends as the very notion of what constitutes television grows harder to define. But the blurring of that definition is one of the very reasons progress is being made. "There are so many more platforms for people to tell stories on now," adds OITNB casting director Jennifer Euston. "So you're not just dealing with the networks. That increases the need for stories, and that means opportunities for people who were considered marginalized. We have so much more creative freedom."

The Merits of Meritocracy
It's hard to forecast what, exactly, the widespread impact will be seeing American Horror Story's Fraser evoke pathos, or in following the protagonist of Amazon's critically acclaimed Transparent, a drama about a middle-aged man transitioning into his real self — "Maura" — and dealing with a largely cisgender (i.e. those whose "self-identity conforms with the gender that corresponds to their biological sex," according to the Oxford Dictionary) family.


And it could be an entire generational cycle of influence before actors born with dwarfism achieve Dinklage's level of uncompromised success, let alone get fair consideration for roles they both naturally embody and can otherwise slip into. Playing such characters is, after all, what essentially typifies acting, although being considered for them has largely been a privilege afforded to able-bodied and cis performers.

"There are films where they take average-size actors and make them smaller," notes actor/comedian/activist Danny Woodburn, who was born with dwarfism and is best known to audiences as Kramer's adversarial friend Mickey on Seinfeld. "On the other hand, would they ever consider making me a six-foot character using special effects? I don't know that that would ever happen. So why is the reverse of that OK?"

For many in Hollywood, the answer is that they're doing their best to make casting a pure meritocracy, where the actor most capable of conveying a character's story gets the job, without discrimination or overly conscientious inclusion. "I think that it's fantastic that I was able to cast Laverne [Cox] and that we went very real with that," offers Euston. "But just because she's a transgender actor doesn't mean she got the role. She still had to be able to act. The same with [Transparent's] Jeffrey Tambor: He's not transgender, but he gives the most beautiful performance as Maura."

Some, like AHS's Fraser, take a harder line, viewing the casting of, say, an able-bodied person in a disabled role as tantamount to blackface. "Finding a two-headed actor is pretty difficult, we'll all agree on that," Fraser concedes. But he suggests, as a case study, casting a character who's "a 30-year-old, heterosexual, wheelchair-using Caucasian woman who works in a cupcake shop in Manhattan. Now, there are going to be at least 15 available [disabled] actresses, and they may not have as much experience as the non-disabled actresses. I get that. But I'm sorry: You have to choose one of those 15. The end. There's just no excuse anymore."

Transparent creator/executive producer Jill Soloway, who hired transgender cast members, consultants and crew in addition to Tambor, is also unsure meritocracy "can be trusted." Her skepticism, however, has less to do with how decision makers level the playing field than a more deeply embedded big-picture patriarchy. "Who is saying 'best'?" Soloway asks of the casting process. "It's probably a straight, white guy. We do all these in-house, DIY transformative action things [on Transparent] that are not only leveling the playing field for trans people, but radically welcoming them into every aspect of the show, understanding the civil rights movement and trying to go way beyond, 'We're willing to see transgender people for the role.'"

Representation vs. Exploitation
All of this begs the question: Are characters like OITNB's Sophia and Game of Thrones' Tyrion a true sign of sweeping mainstream normalization, or merely a small but significant step toward television mirroring societal tolerance? To be more pointed, are actors with congenital disorders playing carnies in a miniseries dubbed Freak Show still inherently being exploited?

"As someone who is an advocate for disabled issues, I find it sort of a yin and yang," says Woodburn when asked about the latest AHS installment. "I'm awed by the fact that we have employment of several people with disabilities on a show such as this, but I'm also torn with some of the perceptions. You have a ghost character [played by Wes Bentley], who was supposed to be the moral compass, say, 'I never cared for dwarves. They're power mad, the lot of them.'…. It struck a nerve with me. It felt derogatory."

Woodburn's reaction to what may have scanned for most as a throwaway gag underscores the challenge for writers and producers looking to simultaneously entertain and educate: One flip bit of dialogue can undo much of the good accomplished in simply casting atypical leads. After all, we're not terribly far removed from a time when, say, most transgender people on TV were portrayed as victims and/or prostitutes.

"It's incredibly important to depict these individuals in a way that's more representative of how things really are," offers Charles Joughin, national press secretary for the Human Rights Campaign (HRC). "When you have characters who are either trans actors playing trans characters or cisgender actors playing trans characters, the focus tends be on the fact that they are trans — and not any other aspects of their identity."

Movie producer/director Jenni Gold, who has muscular dystrophy, recently wrapped a documentary titled CinemAbility, which features interviews with everyone from Ben Affleck to Breaking Bad creator Vince Gilligan and explores Hollywood's past and present relationship to persons with disabilities (PWDs). She shares a bit of Woodburn's hopeful hesitancy and Joughlin's cautious optimism while contemplating a possible-game changer like American Horror Story's current season.

"Obviously, Freak Show is a titillating title and it's about showing something that's unusual," she says. "But the way in which it's handled can be very proactive and positive. If it was written [like] a freak show — pay your dollar and watch this to say, 'Oh, this is weird' — then that's a disservice. If they write stories that show how everyone is ultimately a human being with the same desires, needs and relationships, then it can be very powerful."

The irony of playing a humane freak isn't lost on Fraser, but he feels that "what [AHS showrunner] Ryan Murphy has done is fantastic. I'm sure lots of people have lots of criticisms, but he's the only person who stopped talking about it and actually gave us work. He's not an angel. He's just a really sensible, clever employer." And for those who "would like an icon of exploitation of disabled people on TV," Fraser says he'll "happily replace [Murphy] with Jerry Lewis."

Reality Check
The most telling indicator of our readiness for acceptance may come less from fictional work than television's most polarizing platform: reality programming. TLC's Little People, Big World has chronicled the Roloff family, three of whom were born with dwarfism, since 2006. And while the show has drawn praise from PWD advocates, its network muddies much of that good intent with a prevailingly exploitive roster of franchises including My 600-lb Life and the recently canceled Here Comes Honey Boo Boo.

On the flipside, there have been few transgender sightings in the genre outside of Real World: Brooklyn cast member Katelynn Cusanelli in 2009, but that ratio is about to get shaken. The Tyra Banks-produced docuseries TransAmerica, featuring trans model/actress Carmen Carrera, is slated to air in early 2015. Ditto for Discovery Life's New Girls on the Block, which premieres on April 2nd and follows the journeys of four couples, in which at least one partner is trans. That includes Macy and Sharon, a black couple living in Kansas City, Kansas, who've remained together through Macy's transition to female, enduring their own adjustment period in addition to battling workplace discrimination (Macy has lost her job since starting her transition).

"If you look at the history of how transgender people are portrayed in the media, this gives us a chance to realistically portray transgender people," explains Macy. "Hopefully, folks will see a little bit of themselves in us, whether they're trans or not."

Given reality's reputation for the sensational, there are bound to be skeptics about how New Girls on the Block or TransAmerica can overcome the base tendency toward ratings, but Transparent creator Soloway – who hasn't seen either series  – feels that "it's possible" they can capture America's imagination in a responsible way. "The ideal would be that the reality show was produced, written and directed by trans people," she says, "because the other-izing thing happens so naturally."

While neither Tyra Banks nor New Girls on the Block creators are transgender, NGOTB's co-executive producer Caroline Gibbs does head up the Kansas City, Missouri-based Transgender Institute, which provides therapy and coaching to the trans population. She insists that telling Macy and Sharon's stories this way "is critical, because it's the only medium that gets such a huge audience…[we're] going to be making a show that is going to normalize and un-marginalize this population."

The New Old Normal
Gibbs and Macy's enthusiasm speaks to what CinemAbility director Gold sums up as the "ultimate goal: to accept people with their differences, no matter what that difference is" and help incite a cultural shift where the bigots are the fringe dwellers.

"I believe in the power of television," says OITNB's Euston. "I really do. It's not overnight, and it's never gonna be overnight, but we're doing much better."

"That was one of the things we talked about with Transparent," adds Soloway. "We kind of wanted the trans people to be at the cool kids' table, and if you didn't really understand how to correctly gender somebody, then you were kind of missing out on the edge of the moment."

And far as Fraser's concerned, it's high time to hold the television industry accountable. "TV executives — bless their little, normative, unimaginative cotton socks — they're people that only want to produce something that was last year's hit," he says. "Because they're so scared that if they do anything their boss might not like they'll lose their job. They're wrong. Audiences are ready. They want to see us on TV."