California wildfires left disabled people in peril

From The LA Times:

Marian Bunting, 72, has Parkinson's disease and a caretaker. She had not smelled smoke, nor had she received official warning about the Valley fire, when a neighbor came pounding on the door of her Lake County home and told her she needed to leave. 

Though she moves slowly with a walker, Bunting managed to load her cat into the pickup she rarely drives, and wound up living in the parking lot of a Red Cross shelter. 

"I have a person who takes care of me," she said. "But he wasn't around when it was time to go." 

Others had no way out. As the fire progressed, loved ones deluged the sheriff's dispatch with calls, reporting those who were bedridden, without cars, standing in the roadway with pets — nearly all of them alone. 

"Elderly female alone with Alzheimer's, will not know to leave," read one dispatch entry logged just before midnight on Sept. 12, 11 hours after the Valley fire began its manic progression. 

Most disaster response systems are designed for people who can: walk, run, see, drive, read, hear, speak and quickly understand and respond to instructions and alerts. 

Communication, evacuation and sheltering are key areas in which the disabled elderly, and others with what are known in government and advocacy circles as "access and functional needs," require special attention. 

The still-evolving area of disaster preparedness took hold after Hurricane Katrina in 2005 — when nearly three-fourths of those who died in the New Orleans disaster were older than 60 — and captured the attention of California officials two years later after two San Diego County wildfires. It is now viewed with urgency as the state increasingly goes gray, particularly in rural counties. 

Of 4.8 million Californians who identify as disabled, about 30% are 65 or older. In Calaveras County, where the Butte fire began to rage Sept. 9, 20% of residents are seniors, the highest proportion in the state, according to census data. Lake County is not far behind with 18%, compared with 11% for the state as a whole. 

And as ashes smolder, those fires, which collectively burned more than 2,300 homes, are providing lessons on what worked and what didn't. 

"If you don't shine a light on this issue, it just gets overlooked," said L. Vance Taylor, chief of the Office of Access and Functional Needs at the Governor's Office of Emergency Services. "This state is just a tinderbox. We know that if this doesn't get addressed it's going to be that much worse tomorrow." 

The office was created in 2008 after widespread complaints by the elderly and disabled over the two San Diego County fires. 

Two years ago, Assemblyman Ken Cooley (D-Rancho Cordova) pressed legislation requiring that those populations be integrated into every aspect of California's update to its state emergency plan. Due out two months ago, the update was delayed, Taylor said, "because we've kind of gone from disaster to diaster." 

His office in the meantime has urged local governments through its website to better educate vulnerable residents such as Bunting, alert them when it's time to go, help get them out and meet their needs while they're homeless. 

In Lake County, the fire moved so fast that alerts and evacuation systems broke down, giving county officials no time to deploy accessible vans to ferry out those in need, as they did during two previous fires this summer. 

There were deaths: a 72-year-old woman with multiple sclerosis trapped in her home, and three men over the age of 65, two of whom miscalculated the fire and decided to stay put. 

Butte fire moved more slowly, though both people who died were seniors: a one-legged 65-year-old man who remained to protect his property, and an 82-year-old man who a friend said had become depressed and increasingly immobile. 

Almost immediately, the five-county region's Area Agency on Aging sprang into action. 

Primed by experience with Mariposa County's Rim fire in 2013, staff members reached the providers who deliver home meals, offer community dining to seniors or provide transportation and alerted their own care managers, who got on the phones before they went dead and coaxed clients to leave immediately, said Doreen Schmidt, the agency's disaster coordinator. 

"People were thinking that maybe we were overreacting," Schmidt said. "But we had been through it. We understood that people who are medically fragile, people who have dementia, it's harder to get them out. … We thought, 'We're going to do this, even if it doesn't spread.'" 

Common Ground Senior Services, the area's Meals on Wheels provider, was summoned by emergency officials to aid evacuations with their wheelchair-accessible van, while the local paratransit company deployed a bus. With adult protective services workers alongside them, they evacuated two mobile home parks and a senior apartment complex, Schmidt said. 

Then they launched a frantic search for lodging for those too fragile to stay at Red Cross shelters, for batteries to keep oxygen tanks working and more. 

Disability rights advocates had been pressing for better disaster planning for years when the 2007 wildfire season in California provided more impetus. 

A report by the Pomona-based Center for Disability Issues and the Health Professions noted that the deaf community had not received emergency notifications, those with mobility issues could not be evacuated with their power wheelchairs, and shelters had trouble accommodating those with medical conditions. 

"Most disaster response systems are designed for people who can: walk, run, see, drive, read, hear, speak and quickly understand and respond to instructions and alerts," the report noted. 

Plenty has changed. Among the programs launched soon after the report was FAST, or functional assessment service teams. The state Department of Social Services, which oversees the program, dispatched four teams of government workers and volunteers to the Valley fire, where they observed conditions, met residents and figured out what was missing. 

For example, there are only five portable accessible showers in the state under contract to the Emergency Services office, and a number of them had to be commandeered from a music event in Southern California and trucked north. 

Winnie Pugh, 85, had reluctantly left her Middletown home, abandoning her power wheelchair and a new electric scooter. Everything burned. 

Thanks to a FAST team working with Red Cross and emergency officials, she received a donated power chair — two days after she was assessed but six days after arriving at the shelter. 

The state contracts with Sacramento-based Ability Tools for assistive devices, and the organization found two wheelchairs, one for Pugh, in Concord, said Teresa Favuzzi, executive director of the Sacramento-based California Foundation for Independent Living Centers who was on scene for FAST. Two more chairs were scrounged from separate organizations in Berkeley. 

Favuzzi was struck by how many people in the disaster zone had been unprepared to make their way to safety. She said these fires offer a teaching moment, much as the 2007 blazes did. 

"We're not there yet," she said. "We should not let folks perish like this without responding in some way to improve the chances of people like them in the future."  

'Switched at Birth' creator Lizzy Weiss on that big baby with Down syndrome decision

From Entertainment Weekly:

Earlier this year, the hit ABC Family drama Switched at Birth made headlines with its bold, unapologetic portrayal of campus assault. When one of the main characters was the victim of a sexual assault by someone she loved and trusted, Switched at Birth made waves by telling that story in a fresh, smart way, giving its characters realistic reactions and educated arguments that straddled both sides of the debate.

With the second half of season four off to an eventful start, Switched at Birth is yet again capturing audiences with a one-of-a-kind story that centers around a surprise pregnancy for Toby (Lucas Grabeel, pictured) and Lily (Rachel Shenton). But it’s not just any pregnancy. When Lily finds out the baby has Down syndrome, it opens the door to a whole slew of delicate conversations surrounding special needs, diversity, and abortion.

I spoke with Switched at Birth creator Lizzy Weiss about why she felt she needed to tell this groundbreaking story, and what she hopes it accomplishes by starting—and changing—the conversation about those with differences and disabilities. 

ENTERTAINMENT WEEKLY COMMUNITY: TV pregnancies can be so iffy—the term “jump the shark” comes to mind. What made you decide to introduce a baby now? 

LIZZY WEISS: It was this storyline. It was really a desire to get into this. And I think that is important say; it really is a story. Meaning, I don’t have an agenda except, number one, my job is to be a good storyteller. And number two, hopefully while we’re doing that, to illuminate really interesting conversations to get people talking. I’m not here to push my personal agenda on anyone. I want to be fair to both sides, because I think that makes for good TV, and it keeps all of the characters smart and it’s fair to both sides. 

Once we decided to have Lily be pregnant with a Down syndrome baby, I knew that she would keep it, and it wasn’t because of the network and it wasn’t because they pushed anything or said they couldn’t do anything. It was really because in that story, that was the right choice for a family that has a deaf kid and for a show that is, to some extent, about difference and disability. Once it became a story about Lily, I just knew, of course she would have the baby, because of the kind of family she is in. And that is, for this show and this moment and this family, the right decision. 

It could have been just a regular pregnancy, and it still would have packed a punch. How did you decide go the Down syndrome direction? 

Because this is a show about people who are different, and this is an iteration of that. I just think there are ties there, and I was really interested to get into what Daphne’s perspective (as a deaf person) would be on that. Not from religion, not from science, even though those are all part of who she is too. 

We have really dived into all that territory about what it means to be deaf and treated differently, and I thought it was a better way of tackling one of the biggest themes on our show, which is difference.  

In some ways, it’s a more extreme form of difference, so it’s getting into territory that you don’t see discussed that often. I do like to do that when I can, when it comes up organically and when it makes for a good story. The story about Down syndrome does really does speak to the themes of the show. 

Sometimes I feel like Switched at Birth is your answer to the underrepresentation of those often ostracized or marginalized groups of people. Do you feel a certain kinship to telling stories of diversity and difference? Do you feel like you sort of owe that to your audience?

Once I made Daphne deaf, and I got interested in deaf culture, I realized it’s a culture, it’s a way of talking, it’s a way of being; these [are] little niche communities that I find fascinating. Once I became fluent in the [deaf] culture and understanding, it kind of evolved from there. I became more interested and educated about it. I was on a disability panel at Sundance this year, and I was on there with a bunch of other people, like RJ Mitte (Breaking Bad‘s Walt Jr.), and [Paralympic athlete] Amy Purdy, who is an amazing snowboarder, and actor JR Martinez (All My Children). Just by hearing them talk, I learned even more about disability and their lives and the importance of showing the world as it is. And I became even more of an advocate, and it just kind of keeps evolving. 

Switched at Birth has always opted for real talk on important issues as opposed to glossing over them, and has made a clear name for itself as a show that tries to highlight, and maybe even change the conversation around, topics like rape, deaf culture, domestic violence, addiction, etc. What kinds of conversations do you hope a story like this starts? 

Though Toby and Lily end up making the choice they made, I was very careful and thought it was really important that Lily say, “I firmly believe that every woman has the right to choose what happens to her body and that children should only brought into this world when they are wanted and able to be cared for.” And I just wanted to make sure that was onscreen to counter, so I wouldn’t be accused of putting forth an agenda. But that being said, everyone has their say. I do think it’s just a slightly revolutionary way to look at the world to see it as not worse, just different, as Daphne said [in last week’s episode] as she’s trying to explain to Mingo. I don’t think [Mingo] is a dunce; he’s just a regular person who assumes deaf is worse, and thus Down syndrome is worse. And it’s a shift in perspective that I think you have to be taught, which is—if you don’t live it yourself—it’s actually not worse, it really is just different. They may have lives better than you in a way you can’t understand unless you really are inside it. That is a shocking thing to understand for most people: that being deaf or having Down syndrome is not necessarily worse, it’s just different. That’s the takeaway that I think is shocking for people. 

I found it very interesting to see that Bay (Vanessa Marano) and Regina (Constance Marie) both have a pro-choice stance, and Kathryn and Daphne share a pro-life opinion. That revelation highlights a lot of themes on the show: nature vs. nurture, cultural and socioeconomical identity vs. DNA, etc. Was that an obvious choice for those characters? 

No. Great question! They argued with me about it. My answer to that is, people surprise you. I think Daphne could have gone either way. She is a scientist, she’s not religious. Look at John (DW Moffett)! He surprised you, right? He doesn’t say “abort,” but he doesn’t seem that clear on what to do. He’s not as clear behind closed doors as you might imagine, which I did on purpose. 

And I think for Kathryn (Lea Thompson) and Daphne, I could have gone either way. For Kathryn, I ended up doing that, because of the nature vs. nurture thing, and because I really wanted the girls on opposite sides. But I think for Kathryn, you could have believed either way, and either way that we chose for her would have completely worked with her character. But Katie [Leclerc] argued with me and said she was surprised, but we talked about it and she got there. 

You know the Bechdel test? I just loved the idea of our two protagonist girls arguing onscreen about something really important and having a debate about it that had nothing to do with boys and nothing to do with clothes or anything that is in that Bechdel test. I just really wanted them to be on opposite sides, to hear smart answers on both sides. 

At the end of the episode, Regina tells Bay that she’d better get on board really quickly with Toby and Lily’s decision to keep the baby. Are we going to see everyone be on board moving forward, or will there be more moments of discord over this decision in the family? 

There’s still more processing to be done with the reality of carrying a Down syndrome kid. There were some leaked photos of a baby shower, and at the baby shower, something comes up. You can imagine that having a shower for a Down syndrome baby might be a little different for some people, whether it should be or not. So we bring that up in the shower. 

What else can we expect from the rest of season four? 

We are still dealing with the fallout from the campus assault, so Max Adler will be coming back at some point as Tank. And we have a special episode coming up where the kids go on a trip together. It’s our first episode where it’s kids only, no parents, and it’s for spring break. 

Is there anything else you wanted to share with your audience about this special storyline? 

I can tell you one last thing that is pretty adorable—one pretty special thing I am very proud of. The day we shot the socks scene, I rushed to set that day to make sure that scene went exactly the way that I wanted. And what I saw totally made me tear up. All of the crew was wearing mismatched socks that day. I am not kidding! I was so stunned. There were mismatched socks everywhere to support the story. It was so touching. I was like, This is such a special show. I couldn’t believe it. That’s our crew for you. 

Switched at Birth airs Mondays at 8/7C on ABC Family.

In Britain, Listerine's new vibrating app allows blind people to 'see' a smile

From Marketing in the UK:

Listerine is going for an emotive approach with its latest campaign, unveiling a new app that helps blind people 'see' someone smiling at them. 

The mouthwash brand has released an online film showing several blind and partially sighted consumers explain the social difficulty of not being able to read another’s expression. 

They explain that to experience smiles (and other facial expressions), they will usually have to touch a person’s face. 

The app, built by J Walter Thompson and approved by the RNIB, uses a smartphone’s camera and facial recognition to identify when someone might be smiling. 

The phone will vibrate on detecting a smile, acting as a simple social signal. A blind person using the app can hold up their smartphone and detect a smile up to five metres away. 

The ad, shot by filmmaker Lucy Walker, marks a notable departure from the usual ‘white lab coat’ style of advertising beloved of FMCG brands.

'Shaun the Sheep Movie' raises awareness of brain injuries

From Brain Injury Hub in the UK. (The film opened in the USA August 5.)

When Mark Burton started writing the film in 2010, he and his co-director consulted Headway because they story included a character who suffers amnesia after being hit on the head and they wanted to make sure it was handled sensitively. 

Aardman Animations’ hit comedy follows Shaun and his friends on their adventure to the big city to rescue their lost farmer, who was forced to leave his farm as a result of Shaun's mischief. 

When an accident results in the farmer receiving a bang on the head, the farmer is diagnosed with memory problems and it is up to Shaun and the gang to help the farmer. 

The film's closing credits displays Headway’s logo, helpline number and website address alongside with a message saying "Getting a bang on the head can be serious". 

Aardman Animations also produced a promotional photo of Shaun sitting on a sun lounger reading the Headway booklet Memory problems after brain injury. 

Claire Wagstaff-Townend, development manager for Headway Worcestershire said: "Everyone at Headway is proud to be associated with such a popular and well-loved character. 

"We are delighted that Aardman Animations have decided to highlight that people who have sustained a brain injury often face extremely difficult daily challenges and that these challenges often extend to their families and carers. 

"Aardman animations have tastefully managed to strike a balance between comedy and raising awareness of brain injury in a way that children can absorb and understand.”

New book collects magazine, newspaper writing of Helen Keller; illustrates she was one of the great progressive thinkers of 20th century

Note: This is a new book edited by Media dis&dat's Beth Haller. The book is available from the Advocado Press in print form and as an e-book from Amazon. An audiobook available from iBooks is in the works. 

FOR IMMEDIATE RELEASE

 Helen Keller is experiencing a 21^st century renaissance. Finally she can be embraced not as an iconic deaf-blind celebrity but as a significant progressive thinker of the 20^th century.

The new book, Byline of Hope: Collected Newspaper and Magazine Writing of Helen Keller, gives voice to her ideas about how to make the world a better place and how to create a more equitable and peaceful America. Keller's "was the perfect message for the 20th century...that positive social change could occur."

Helen Keller’s life offers much for study; she was an author, a socialist, the star of an early silent film, a vaudevillian, a suffragist, an international advocate and fundraiser for blind people, and even a co-founder of the ACLU. But no book has collected or examined her writings for newspapers and magazines until now.

Byline of Hope includes her newspaper and magazine articles located in publications like Good Housekeeping, Ladies Home Journal, and The New York Times, as well a little-known monthly magazine column that carried her byline for five years in the early 1930s. In an interview, Keller biographer Dorothy Herrmann said of her 5-year stint as a magazine columnist: “This is probably Helen Keller who Helen Keller was. It was Helen Keller unadorned by helpers.” 

The book organizes her magazine and newspaper articles around themes, such as her sensory experiences, her socialism, and her advocacy of women’s issues and moral character.

Byline of Hope is published by the Advocado Press, which publishes books on the disability experience in America. The $19.95 softcover book is available for purchase online at www.advocadopress.org or as an e-book for $9.95 from Amazon.

The book is edited by media and disability scholar Beth Haller, author of the 2010 Advocado Press book, Representing Disability in an Ableist World: Essays on Mass Media. She is a journalism professor at Towson University in Maryland and curates disability news at Media dis&dat, http://media-dis-n-dat.blogspot.com/.

New documentary 'Becoming Bulletproof' tracks the power of disabled actors representing themselves

A review from 'Criptiques' writer/podcaster/filmmaker Cheryl Green. Watch the trailer for "Becoming Bulletproof" here.

“Becoming Bulletproof” is an award-winning documentary currently on the film festival circuit. It shows the making of an original short Western called “Bulletproof.” Because many of the cast and crew have disabilities, the documentary is described as being part of an overall awareness-raising strategy to promote integration and creative opportunities. But it goes so much further than awareness-raising. In fact, “Becoming Bulletproof” shows a major attitude shift in action, modeling relationships and interactions that rarely happen in larger society in a group that’s come together by choice. Star AJ Murray says that working on the movie, he felt “significance, dignity, and purpose.” These are things not offered him in his typical daily life as a Black man with disabilities. Our society is set up to isolate disabled people, force many into dependence on family, and reinforce other-ness at every turn. So I say hats off to “Becoming Bulletproof.” 

The documentary, directed by Michael Barnett, takes place at Zeno Mountain Farm, an intriguing place that’s as much a location as a philosophy. They run integrated camps for adults where no one pays tuition and no one gets paid to work. The founders value a world where disabled people aren’t segregated or shut out of opportunities because of cost. One of the many projects they do every year is to create a film. This is where “Bulletproof,” the short film is developed. 

From the documentary’s Facebook page: “‘Becoming Bulletproof’ will explore the friendships that develop between people with and without disabilities as they live together for the duration of the movie camp. The film digs into the beauty and difficulty of the relationships of people who come from all walks of life. In addition, ‘Becoming Bulletproof’ follows the campers home to show what it means to be disabled in a modern world. Going home with the campers breaks preconceived notions that the audience may have about what living with a disability is truly like.” 

There are tons of people in the film, and one documentary can’t provide intimate portraits of everyone in a cast this large. The emphasis is on profiling some of the 18 actors with disabilities and showing their insights, perspectives, and even their bodies more than those of the non-disabled participants. That’s potentially dangerous territory; this dynamic usually leads to an unexamined recreation of the circus freak show. Yet, “Becoming Bulletproof” handles this gracefully without objectifying the disabled actors. My guess is that the emphasis was on disabled people because most audiences are significantly less likely to have seen people with disabilities onscreen. So they are very interesting and novel documentary film subjects. Additionally, it might be a product of the Zeno founders and the documentary film creators being non-disabled and the fact that they’ve targeted their film to a non-disabled audience. 

If you follow this blog, you know how often I write about the dire need our media landscape has for more disabled media makers and performers, as well as characters with disabilities. It’s beyond outrageous the lengths people will go to, to avoid working with the disability community. I’ve worked with people here in Portland who complained that we shouldn’t hire disabled folks because “they’ll never get anything done” or “it’s too much work to accommodate them” (as if you know from the word “disability” what accommodations you might have to provide before you meet someone). 

My hope and dream is that people who see this documentary will awaken to how stigmatizing and oppressive these ableist attitudes are. In less than an hour and a half, in this film you see a huge range of ways in which people with disabilities get tremendous amounts done, and the accommodations needed weren’t considered burdensome. For these reasons, I hope the film also gets targeted to disability communities as well so that people can see themselves reflected back not as help objects, pitiful, inspirational, or a trouble someone has to shoulder. 

“Becoming Bulletproof” is a phenomenal film with absolutely top-notch videography and audio. It’s clear in every step of both the short film and the documentary, that all of the performers were treated like professionals and expected to perform as such. I’ve seen the documentary described online as “uplifting.” Sure, I cried a couple times out of sheer happiness when I watched it. But if uplifted is the strongest thing you felt, you missed at least half of what the movie has to offer. “Becoming Bulletproof” doesn’t have to be a feel-good film where you praise the non-disabled people for being thoughtful helpers and the disabled people for doing a special job making their special movie. This is a group of people making a real short film, having a real documentary made about them; some of them are disabled, while some are not. 

I know some people will come away from this movie “inspired” but without motivation to work toward equity in society. I do have faith that others will leave saying, “Damn it. We should be creating and allowing for 20% of our nation’s population to create and show up in, oh, maybe 20% of our media!” As AJ put it, “I want disability to have a seat at the table in pop culture.” This is not about saying “you’re such a good actor, I forget you have a disability.” This is about naming it truthfully and living with integrity and respect. AJ is referring to correcting the lack of representations and the misrepresentations of disability in media and culture. The Zeno Mountain Farm performers and stars of “Becoming Bulletproof” are most certainly going to be among the leaders in this movement.

Autism community criticizes hit Broadway play for opting, again, to cast a non-autistic lead

From the Village Voice:

Since its release in 2003, Mark Haddon’s bestselling novel The Curious Incident of the Dog in the Night-Time has faced repeated criticism over its portrayal of autism. Though the story’s fifteen-year-old protagonist, Christopher, is never explicitly referred to as autistic, a synopsis on the book’s back cover describes him as suffering from Asperger's syndrome — a neurodevelopmental disorder on the autism spectrum — and critics have derided the narrative for perpetuating harmful stereotypes about the disabled community. 

Even as Curious Incident lives on as a successful Broadway play — garnering a total of five Tony Awards in 2015, not to mention a rave review from the Voice — the production's handling of autism continues to draw the ire of the autistic community.

Last month, it was announced that starting September 13, Tyler Lea would be replacing Alex Sharp in the lead role of Christopher for the show's Barrymore Theatre run. Both Lea and Sharp are "allistic," a term the autistic community uses to describe non-autistic people, and the decision was seen as yet another missed opportunity to allow autistics a modicum of control over how they are represented in popular culture. The community argues that more autistics should have been considered for the role — or, at the very least, consulted during the casting process.

“At the end of the day, this is a concern because the production has shown that they are not looking at perspectives of actual autistic people as a priority,” Ari Ne'eman, the president and co-founder of theAutistic Self Advocacy Network, tells the Voice. “And in the context of a story that is all about presenting autistic people as this ‘other,’ this alien force, that’s really damaging.”

Appointed to the National Council on Disability by President Barack Obama in 2009, Ne'eman was the first openly autistic White House nominee in history. He founded the ASAN because, he says, autistic people have historically been left out of conversations regarding their own well-being. Though the ASAN has not taken any official action on the issue yet, Ne’eman says the nonprofit has been contacted by a growing number of autistics expressing outrage over the casting decision, and that the organization fully supports the community’s concerns.

“When we talk about acting as being about inhabiting a role, the question that really has to be asked here is how much is this inhabiting the experiences of autistic people versus inhabiting societal stereotypes of autistic people?” Ne’eman says. “It’s much easier to ignore autistic community input when there are no actual autistic people involved in the production.”

“I'm sick of the way that autism is portrayed in the media by non-autistic actors,” one commenter wrote. “I believe autistics are the experts in their own experiences,” added another. The petition has since been removed from the Change.org website.Earlier this year, a petition criticizing the play’s casting choices gained close to 400 signatures on Change.org. Dozens of autistic people and allies from around the world commented on the website, imploring the show's producers to let the community represent itself onstage.

The topic has also been discussed on Twitter — using the hashtag #FilmDis — as part of a weekly conversation every Saturday night on the topic of how disabled people are portrayed in media. And the popular theater websiteHowlround wrote a piece while Sharp was still in the cast asking whether or not it was appropriate to cast a non-autistic to play a character with autism. The article generated a lively discussion in the comments section.

Carolyn Ledesma, an autistic woman from Portland, Oregon, says the autistic community’s repeated attempts to contact the play about its casting process have gone unanswered. The production declined the Voice’s requests for interviews, instead offering a brief statement through a publicist via email.

“There has always been a policy of inclusion in the opportunity to audition for Curious Incident,” the statement reads. “Actors who identify themselves as being on the autistic spectrum have auditioned for the role of Christopher in the play. The production would like to reinforce that professional actors who identify as being on the autism spectrum are encouraged to submit their headshot, résumé, and any relevant information about their actor training or experience for consideration to audition.”

Haddon, too, declined a request for comment through his literary agent, Aitken Alexander Associates. The agency instead directed the Voice to a 2009 post on Haddon’s website titled “Asperger’s & Autism,” in which the author admits to conducting no research on either disability prior to writing the novel. 

"[C]urious [I]ncident is not a book about Asperger’s," Haddon wrote. "It’s a novel whose central character describes himself as ‘a mathematician with some behavioural difficulties.' Indeed he never uses the words ‘Asperger’s’ or ‘autism.' " He also concedes that he wishes the word Asperger’s had not been used on the book’s cover.

There is a long, controversial history of “ableism” in Hollywood and on Broadway, from Dustin Hoffman’s autistic, savant-like character in the 1988 film Rain Man(for which he won an Oscar) to Eddie Redmayne’s portrayal of Stephen Hawking in last year's The Theory of Everything.Very rarely are disabled actors given the opportunity to play disabled roles, and seldom, critics argue, do allistic writers craft accurate, multidimensional disabled characters in their work. This approach, they say, leads to pernicious stereotypes and public misconceptions about what it means to be a disabled person in America.

“Other than just that autistic people start with a leg up on understanding how autistic people work, it’s also a big deal because it’s symbolic,” explains Elizabeth Bartmess, an autistic writer who earlier this year penned an in-depth critique of Haddon’s book for the website Disability in Kidlit. “Having autistic actors play autistic characters sends a really big message about how it’s important to include us in things that are actually about us.”

As director Steve Kloves works to turn Curious Incident into a film, and representations of disabled people continue to abound both on the screen and the stage, the hope is that the autistic community will one day be given a greater say in how its members are depicted.
“That’s really what this is about, at the end of the day,” explains Ne'eman. “It’s about the idea that disabled people should not be made incidental to our own stories.”