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."

Disability history/policy scholars take note, 800 boxes of Tom Harkin's papers arrive at Drake University in Iowa

From the Des Moines Register:

A semi-truck backed up to the loading dock at Cowles Library at Drake University early Monday morning and began unloading 40 years of Iowa and American history.

The Americans with Disabilities Act. Two Farm Bills. A presidential candidacy. Thirty-seven steak frys. Bills, books, reports, constituent letters and emails perhaps beyond counting.

In all, 800 boxes of documents, media and mementos were hauled into the university archives on the library's second floor, representing the bulk of now-retired U.S. Sen. Tom Harkin's papers.

The long-serving Democrat and liberal stalwart left the Senate this month after 30 years in office (and another 10 in the U.S. House before that). Drake University and the Harkin Institute for Public Policy and Citizen Engagement are his papers' final resting place, where they'll be organized, cataloged, digitized and made available to anyone with an appreciation for politics, public policy or history.

"The end goal is access," said Hope Grebner, the Drake University archivist tasked with bringing order to the collection.

She guessed it would take her a week just to get the boxes — now massed in a pile on the concrete floor — properly arranged on the gray steel shelves. Then comes the sorting, arranging, the creation of indices and guides to ease the work of scholars and historians.

Those 800 boxes aren't even the whole story. A few dozen more boxes were already in place on Monday, shipped in from Harkin's offices in Des Moines and across Iowa. Two more pallets are on their way in from Washington, D.C., via FedEx, mostly full of awards and mementos.

Already resting on one shelf was a supersized photo of Harkin in denim and a Deere hat, holding a piglet by its hind legs — apparently about to do something for which his successor, U.S. Sen. Joni Ernst, has more recently become famous.

The archives also will house something called a Drobo — a piece of computer hardware containing six terabytes of data — saving for posterity email from constituents, photos and video and even the Word documents saved on staffers' computers.

There's even a way to archive Harkin's Twitter, Facebook and YouTube postings. And archived they will be.

That the Harkin papers represent an incredible trove of primary source data for researchers interested in the Americans with Disabilities Act, U.S. farm policy or the Affordable Care Act is obvious. Likewise Harkin's 1992 presidential bid and perhaps his South Vietnam "tiger cage" revelations as a young staffer.

But who knows what else the collection might contain? Harkin himself may not remember, Grebner said. Treasures are waiting to be found.

"It's exciting to see everything arrive and to think of the richness of these historical documents," Harkin Institute Director Marsha Ternus said. "They cover so many years, and so much legislation that was groundbreaking and important."

Ternus said she's particularly excited about the vast collection of constituent case work — emails and letters from everyday Iowans that an enterprising social scientist could mine for insights into the daily challenges and concerns of people from the 1970s to the 2010s.

The work of organizing and making Harkin's papers accessible will take many months. But Grebner, Ternus and others are aiming to make at least the documents relating to the Americans with Disabilities Act available this summer — in time for the 25^th anniversary of Harkin's signature legislative accomplishment.

The timing is fortuitous: documents generated by Senate committees cannot be made public until 25 years after their creation, meaning the ADA materials will be accessible for the first time just this year.

"It's fortunate that one of the most important pieces of legislation that he worked on will be one of the first things that we can make public," Ternus said.

Eventually, Institute staffers want to build programs and exhibits around the materials found in the collection — perhaps on subjects like the ADA or Harkin's annual steak fry fundraiser.