Tuesday, May 3, 2016

With new YouTube series, 'Speechless with Carly,' Carly Fleischmann aims to be first non-verbal autistic talk show host


Carly Fleischmann has severe, non-verbal autism, but that didn’t stop her from interviewing one of Hollywood’s biggest (and hunkiest) stars, Channing Tatum. 
Fleischmann, who is from Toronto, was diagnosed with autism and oral-motor apraxia at the age of two. This means that she cannot speak. However, at the age of 10, she had a breakthrough and realized she could communicate through typing on a computer. 
Now the 21-year-old communicates through technology, revealing her witty, honest and hilarious personality. Watch below as the young woman interviews her biggest crush, Tatum. Here she asks him all sort of personal questions, ranging from his childhood to his marriage to his baby girl Everly. 
In the amusing seven-minute clip, Fleischmann makes her love for Tatum clear. When introducing him, she casually jokes, “Soon [Tatum] will dump his wife to be with me.” Later, she then reveals that sitting beside the 36-year-old actor is one of thescariest moments of her life. 
Fleischmann’s interview is part of her new YouTube series, “Speechless with Carly Fleischmann,” which launched on April 29. Through her series, the 21-year-old hopes to become the “world’s first autistic and non-verbal talk show host.” 
On Saturday, Fleischmann shared her video on her Facebook page where it quickly racked up over 13,000 likes and received hundreds of positive comments. 
“OmG that interview was GREAT! You are so funny!” one fan wrote. “How about the first non verbal comedian? Think it over. Love you Carly!” 
Another said: “Who cares about autism after seeing this... There is nothing about autism getting in your way here!!!! Well done Carly ...well done!!!!!!” 
Since finding her voice, Fleischmann has made it her duty to spread autism awareness. In 2012, the young woman made headlines after she co-wrote a book called “Carly’s Voice” with her father, Arthur, based on her struggles and experience with autism. 
That same year, a video revealing what autism is really like from Fleischmann's perspective went viral. Today it has over 2.5 million views. 
Earlier this year, Fleischmann was also credited for bringing awareness to Toronto’s “dancing barista,” Sam. In January, Fleischmann posted a video of the Canadian teen with autism to Facebook and YouTube in an attempt to combat misconceptions about the condition.

Saturday, April 30, 2016

Groundbreaking settlement to end discrimination against blind Uber riders who use guide dogs

From Disability Rights Advocates:

April 30, 2016 – Berkeley, CA – In an unprecedented settlement announced today, Uber has agreed to take affirmative steps to prevent discrimination against blind riders who use guide dogs in its transportation network across the United States.
The settlement resolves a lawsuit—National Federation of the Blind of California, et al. v. Uber Technologies, Inc.—brought by the National Federation of the Blind, its California affiliate, and individuals who use guide dogs, to ensure that guide dog users have full and equal access to vehicles in the Uber network. This is the first nationwide class-action settlement of its kind against an app-based transportation network company.
While the growth of Uber’s on-demand transportation services has the potential to be a boon to blind people, drivers using the Uber platform have denied rides to blind people who use guide dogs. Any such discrimination violates federal and state laws that protect the rights of people with disabilities. Under the settlement, Uber will work to end this discrimination and blind individuals will be able to use Uber without the threat of discrimination.
Uber has agreed to take affirmative steps to tell drivers about their obligations to transport riders who are disabled and use service animals. Uber will require that existing and new drivers expressly confirm that they understand their legal obligations to transport riders with guide dogs or other service animals. Uber will also implement stricter enforcement policies—Uber will remove a driver from the platform upon a single complaint if Uber finds that the driver knowingly denied a person with a disability a ride because the person was traveling with a service animal. In addition, if Uber receives complaints that a driver denied a person a ride because of a service animal on more than one occasion, the driver will permanently be removed from the Uber platform regardless of the driver’s intent.
Uber will also enhance its response system for complaints related to discrimination against guide-dog users, and will track detailed data on all allegations of such discrimination. Additionally, the National Federation of the Blind and its California affiliate will deploy testers over a multi-year period to evaluate Uber’s compliance with the settlement.
Mark A. Riccobono, President of the National Federation of the Blind, said: “Access to reliable and effective transportation is critical to the ability of blind people to live the lives we want. Uber and similar services can be a great asset to the blind when they are fully and equally available to us. The National Federation of the Blind is therefore pleased with Uber’s commitment to effectively enforce a nondiscrimination policy with respect to blind people who use guide dogs. We look forward to working with Uber to ensure that all blind passengers can take advantage of the innovative transportation service it offers.”
Plaintiff Michael Hingson commented: “This settlement is a great step forward for all blind people. Uber can be such a convenient transportation option. I’m looking forward to being able to use the Uber services when Uber makes the changes needed to fix its discrimination problem and bring true access to guide dog users.”
Attorney Larry Paradis of Disability Rights Advocates said: “This settlement sets important precedent and shows that companies cannot ignore the rights of people with disabilities just because they use a new technology or a novel business model. We are pleased we could come to an agreement with Uber and look forward to working with the company to ensure a more accessible system.”
Attorney Michael Bien of Rosen Bien Galvan & Grunfeld LLP observed: “Technology-enabled services such as Uber have tremendous potential to empower people with disabilities to live more independent lives. By ensuring reliable equal access for blind riders with service animals to Uber’s services, this agreement harnesses that potential.”
Plaintiffs and defendant submitted the proposed settlement to the court on April 29, 2016, and seek approval from the court to settle as a nationwide class action. Copies of the settlement and other documents can be found athttp://dralegal.org.
Plaintiffs are represented by Larry Paradis and Julia Marks of Disability Rights Advocates, Timothy Elder of TRE Legal, and Michael Bien and Michael Nunez of Rosen Bien Galvan & Grunfeld LLP.

Friday, April 29, 2016

Thai university creates cheap, touchable ink for blind people

From CNET:

Researchers at Thammasat University in Thailand have created something that will potentially make it a lot cheaper for the blind to read. 
Called Touchable Ink, this new ink has the ability to rise when heated, turning what would normally be a flat row of printed Braille letters to an embossed version readable by fingers, according to a media release.
Developed in conjunction with Samsung, who supplied the printers, and advertising agency J Walter Thompson (JWT), the university expects that the ink will eventually be able to be used in normal printers. 
Touchable Ink promises to lower the cost of printing Braille text for blind users from the current cost of $1.1 (£0.75, AU$1.50) per embossed A4-sized page to just a mere 3 cents per page using a standard printer. Furthermore, there won't be a need to pay around $2,850 for a Braille embosser." 
We are quite certain that the cost of touchable ink would be a lot cheaper than Braille printing, considering that the material ingredient that we use is a lot cheaper compared by volume to the average toner quantity in cartridges available on the market," said a JWT spokesperson to CNET. 
It's not the only recent instance of technology being used to help to visually impaired. Facebook recently rolled out a new feature that describes what's in a picture for blind or visually impaired users with screen readers (a program that provides audio descriptions of the text on screen). 
Similarly, Apple's iPhones and their VoiceOver function help the visually impaired with navigating around town, surf the internet and even snap some great pictures.

Applications now being accepted for NBCUniversal Tony Coelho Media Scholarship

From AAPD:

Thanks to a generous contribution from NBCUniversal, the American Association of People with Disabilities (AAPD) is proud to offer the NBCUniversal Tony Coelho Media Scholarship.
In 2016 the NBCUniversal Tony Coelho Media Scholarship will offer eight (8) scholarships to 2nd year associate students; undergraduate sophomores, juniors, and seniors; and graduate students with disabilities who are interested in pursuing a career in the entertainment industry. Each recipient will receive $5,625 to help cover the cost of education at their current college or university. The scholarship will be available for the 2016 fall semester. The 2016 application is due July 1, 2016 by 5pm ET.
This scholarship has been named in honor of Tony Coelho, a former United States Representative from California and the primary author and sponsor of the Americans with Disabilities Act (ADA).
Coelho was elected to Congress in 1978 and served for six terms until 1989. During his terms, Coelho authored the original ADA, signed into law by President George H.W. Bush. By 1994, the U.S. Census Bureau reported 800,000 more people with severe disabilities were employed than when the ADA was first enacted, in large part thanks to the work of Coelho, his successors, and predecessors.
From 1994 to 2001, after being appointed by President Bill Clinton, Coelho served as Chairman of the President’s Committee on Employment of People with Disabilities. He also worked as the Vice Chair of the National Task Force on Employment of Adults with Disabilities. In 1998, Clinton appointed Coelho as the United States Commissioner General at the 1998 World Expo in Portugal. Clinton also appointed Coelho as Co-Chair to the U.S. Census Monitoring Board, a position he held until his appointment as general chairman of the Gore Presidential Campaign.
From June 2009 to June 2010, Coelho served as the Chairman of the American Association of People with Disabilities (AAPD), the country’s largest cross-disability membership organization.

2016 Scholarship Application Process

Eligibility

Any 2nd year associate’s degree student; undergraduate sophomore, junior, or senior; or graduate student who self-identifies as an individual with any type of disability. Students must be interested in pursuing a career in the entertainment industry – all majors are welcome to apply.
Please note: You will not be required to disclose your specific disability; however, your application for this scholarship will signify that you consider yourself a person with a disability. This scholarship is run specifically for students with disabilities by the American Association of People with Disabilities (AAPD).
Applicants chosen to receive an NBCUniversal Tony Coelho Media Scholarship release all information contained in their application for use on the AAPD website and in public press releases, including releases to the program funders and potential employees.

How to Apply

Due to an overwhelming interest in the NBCUniversal Tony Coelho Media Scholarship in 2015, AAPD is proud to announce that eight (8) scholarships will be available to students with disabilities pursuing communications or media-related degrees in 2016. AAPD would like to thank NBCUniversal for their commitment to the growth of the program and increasing their support in 2016!
Apply Online!
Applications can be completed online (through the link above) and must be submitted by 5pm ET on July 1, 2016. Incomplete or late applications will not be considered.
Applications can also be submitted to scholarship@aapd.com. To do so, please send one email containing the completed application form (download the Word application form here) as well as your a) resume, b) unofficial transcript, and c) letter of recommendation. All applications must be submitted with all required attachments in one email. Any candidate who submits an incomplete application will be automatically disqualified.

Thursday, April 14, 2016

Burger King's king finally speaks, by signing, for American Sign Language day

From Adweek:

From the days when he would pop up, unannounced, in your bed in the morning, Burger King's King character has never actually spoken a single word, preferring to let his creepily silent visage speak for him. But now, to celebrate National American Sign Language Day this Friday, the King is speaking up—by signing.
And he's asking BK fans to come up with an official sign for the Whopper sandwich.
Check out the announcement of the project in the video below, from David in Miami and Bullitt director Josh Greenbaum. It's creatively noteworthy in part because the entire 2:27 video is completely silent, which lends it a certain poignance that it wouldn't have otherwise.



"The Burger King brand is built not only on including everyone, but celebrating everyone," Fernando Machado, the fast-food chain's svp of global brand management, said in a statement. "National ASL Day felt like a perfect opportunity for the King to extend our brand mantra and engage with the ASL community on such a great day."
BK has also created an ASL version of its logo, and is making a scholarship donation benefiting students who are dedicating their studies to ASL language and interpretations.
It also has the King interpreting a recent TV spot in ASL, as you can see below.



Saturday, March 19, 2016

Beyoncé casts model with muscular dystrophy to promote new products


Jillian Mercado, a blogger and model with muscular dystrophy, has been cast as a new face of Beyoncé’s online store, where she can be seen modelling the T-shirts, hats and sweaters that comprise the pop star’s latest line of merchandise. 
Mercado announced the news through her social media channels: “OK LADIES now let’s get in FORMATION!” she wrote on Instagram. “So BEYond excited to finally announce that I’m on the official @beyonce website!!!” 
The image she posted features her in a wheelchair alongside two other models. Mercado is wearing a “hot sauce” cap and a sweater emblazoned with the line “I twirl on them haters”. 
The words have been pulled from the lyrics of Formation, the surprise singleBeyoncé released in February. The song and clip represent Beyoncé’s most brazenly political work, commenting on the failure of race relations in the United States – both past and present – and their intersection with class, sexuality and gender. 
The Guardian columnist Syreeta McFadden celebrated the clip as an “inherently political and a deeply personal look at the black and queer bodies who have most often borne the brunt of our politics”, saying: “It compels us to reclaim the black American narrative from its margin and make it centre.” Beyoncé’s performance of the song at this year’s Super Bowl paid homage to the Black Panthers, Malcolm X and the Black Lives Matter movement. 
Mercado has been represented by IMG Models since last year and has worked oncampaigns for Diesel Jeans and Nordstrom. But the 28-year-old began in the industry much earlier, working as an intern at a variety of fashion magazines while studying at the Fashion Institute of Technology in New York, where her classmates compelled her to start blogging. 
“At first I was very hesitant,” she told Vogue in August. “I wasn’t sure about showing everyone my world because I didn’t know if there would be an audience. We’ve been brainwashed [as a society] not to care about someone who has a disability, or their world.” 
Her blog, Manufactured 1987, is equally weighted with posts about new fashion lines and her career as a model. She uses the blog, along with social media, as a platform to champion diversity in her industry. 
“I was shocked that I didn’t see anyone in the industry who was like me,” Mercado told Vogue. “So when people — girls especially — tell me that I’m their role model, I am taken aback. I love it and it is flattering but it affects me on a very personal level because I remember growing up without having a person I could look to.” 
Mercado wrote on Twitter that since the Beyoncé merchandise images had gone live, the feedback from the press had been “truly surreal” – and she used the moment to start another conversation. 
Referring to the term “wheelchair-bound”, which many in the disability community find offensive, she tweeted: “Now how about we fix that word bound...”

Thursday, March 17, 2016

UK award-winning film stars disabled actress in lead role

From Pos'ability magazine in the UK:

With the lack of black actors causing boycotts at this year’s Oscars; criticism of leading men like Eddie Redmayne ‘cribbing up’ to play disabled characters (The Theory of Everything) and now Joseph Fines in the firing line for playing a bleached up Michael Jackson in a one-off Sky 1 comedy, a new British indie film promises to put diversity in the front row by casting a disabled actress in the lead role to reflect her real condition on screen. 
Little Devil is a multiple award-winning British indie film that picked up gongs including ‘Best Lead Actress’ for its disabled star at the 2014 Los Angeles Diversity Film Festival. And now, taking advantage of the growing ‘on-the-go’ viewing habits of audiences, the movie gets its global release exclusively on-line via Distrify this February 2016.   
Little Devil is saucy, character-driven feature film about a mischievous, sexually frustrated disabled girl who forms an unorthodox relationship with a troubled, gay male escort. But rather than being a victim of her condition, she uses her disability, Osteogenesis Imperfecta (Brittle Bones), as a cunning advantage in achieving her hidden agenda. 
The film stars newcomer, Sam Renke (pictured), from Leyland in Lancashire, who has Brittle Bones, and – to our knowledge – will be the first disabled actress to take on a debut lead role in a British independent movie – and win awards! Sam worked closely with the film’s writer and its director, Max Barber, to base some of the plot on her real-life experiences of dating and sexual exploration from the perspective of someone with an abnormal condition, but with very normal sexual desires. The film is a radical vehicle for Sam in raising disability awareness as she is currently campaigning with Channel 4, as well as SCOPE, and still works to support The Brittle Bones Society where she was trustee, 2009 – 2015. 
Sam comments: “I’m not a ‘sit at home’ type of girl, I’m very pro-active in raising awareness in what to me, is still a blinkered world at times. The shameful lack of diversity at the Oscars, again, means that all of us in a perceived ‘minority’ must make a noise and demand change. The world’s population is amazingly varied – something not reflected by The Academy and its white, wealthy, ageing heterosexual male members.” 
Playing alongside her in the supporting role is black, British actor, DeObia Oparei who is currently making it big in Hollywood. Better known for his action movies: Doom, Thunderbirds & Dredd; more recently he appeared as Areo Hotach in Game of Thrones and he also features in this summer’s blockbuster sequel Independence Day: Resurgence. 
Rust & Bone, The Sessions, Marnie’s Story, The Finishers are just a few of the notable movies putting disability in the forefront of cinema in the last few years. Little Devil is leading the way in raising awareness of Brittle Bones in a frank and entertaining way. It portrays the condition as anything but a disability – and it doesn’t need an able-bodied actress pretending to use a wheelchair to do it. Little Devil revolves around the theme of unconventional families and sets out to turn the notion of what constitutes sex and body-diversity on its head. The film is designed to be a poignant, but ultimately, uplifting tale and deliberately sets out to court controversy and debate with its frank scenes and radical casting. 
The movie is directed and co-written by London based, first-time feature director, Max Barber, originally from Grays in Essex, who has a string of award-winning short films to his name released through Peccadillo Pictures in the UK and TLA Releasing in the USA. He’s best known for some of the TV shows he’s directed which include Geordie Shore, A Girls Guide to 21st Century Sex & Don’t Tell the Bride, so expect a fair sprinkle of outrageous behaviour and drunken shenanigans! However, Max promises the movie will certainly be a step away from his roots in television and will not skirt around the more weighty issues the film raises, choosing instead to bend convention, lay his characters bare, and apply his bold and colourful film-making style. 
Max comments: Understandably big star names attract film finance and audiences, but unless you start giving bigger parts to actors who don’t fit the convention, then you won’t get new and diverse talent into the system. I deliberately cast a disabled, up-and-coming actress, Sam, in the lead role, to get people talking, and gave her a powerful and positive character, rather than the stereotype, freak, villain or victim.” 
The trailer and film Little Devil is available to be seen and for rental or download on Distrify.

Friday, February 26, 2016

Amazon reaches deal with Deaf rights group to caption all video


A deaf rights group that sued Netflix to compel it to caption all its video programming has reached a similar deal with Amazon over its streaming video. 
Unlike the Netflix settlement, the deal between Amazon and the National Association for the Deaf was negotiated without litigation. 
Amazon has already captioned 100 percent of the video it offers through its Prime Video and has agreed to continue to do so. Under the deal with NAD, Amazon will move through its back-catalog content, captioning an additional 190,000 titles which weren't given captions by the content creators. 
For videos that have been viewed more than 10 times in the past 90 days, Amazon will get 90 percent of them captioned by the end of this year and 100 percent of them captioned by the end of 2016. 
"The NAD is thus thrilled by Amazon’s decision to make its online entertainment experience more accessible to deaf and hard of hearing customers who also look to Amazon to fulfill their needs for comprehensive goods and services," said Howard Rosenblum, CEO of the NAD. 
"All content available through Prime Video has been captioned since the beginning of this year and we already offer an extensive selection of captioned content," said Jim Freeman, VP of Amazon Video. "We are happy to partner with NAD to extend captions even deeper into our back catalog of titles." 
NAD attorney Namita Gupta said that the group tried to negotiate with Netflix, too, but "they were unwilling" and the negotiations failed. The discussion with Amazon, by contrast, was "amicable from the start," she said. 
Gupta said she hopes the Amazon settlement will serve as an example for anyone providing streaming video online. Asked if NAD was considering negotiating for 100 percent compliance from smaller entities who stream video online, through YouTube for instance, Gupta declined to comment. 
Harvard and MIT were sued by NAD earlier this year over their online courses, which aren't properly captioned. That case is ongoing. The university defendants have asked the case to be dismissed or stayed (PDF) until the Department of Justice releases its guidelines on when and how websites should be made compliant with the American for Disabilities Act. NAD has opposed that motion, which is fully briefed and could be decided any time. 
The DOJ guidelines are needed in part because courts have come out differently on the matter, the universities argue. In Massachusetts, a federal judge allowed the NAD lawsuit against Netflix to move forward. In April, the US Court of Appeals for the 9th Circuit ruled differently, finding that the ADA doesn't apply to Netflix.

Tuesday, February 23, 2016

Service launched to help universities comply with ADA web site regulations


Acknowledging that a wide variety of higher education institutions have run into legal problems because access to their Web sites does not conform to the most recent version of the Americans With Disabilities Act, Perkins School for the Blindhas launched a consulting service that will help colleges and universities meet requirements and enhance access to their digital resources. 
A division of the Perkins School in Watertown, MA, Perkins Solutions conducted a survey of the 20 colleges and universities ranked highest by U.S. News & World Report. The study found that more than 90 percent of the schools — meaning all but one or two — failed to meet at least some of the guidelines the federal government has set to make Web sites accessible to disabled users. 
As a consequence, Perkins has introduced its Perkins Access set of services to help schools address the problems of accessibility. Harvard University and theUniversity of Notre Dame have already taken advantage of the service. 
A team of accessibility technology experts will review a university's digital assets across the enterprise and provide an access report that outlines the accessibility issues discovered. The review typically includes Web content, mobile applications, Microsoft Office files, PDFs and hardware. 
The team can then develop remediation plans to ensure that those assets can be fully used by individuals with disabilities. Remediation efforts can include coding, the types of files used, and the captioning and audio description of rich media. If required, the team can also offer ongoing monitoring and a staff training program. 
"By making Web sites accessible," said Perkins Solutions Digital Accessibility Director Cris Broyles, "we not only create a more accessible world for individuals with disabilities, we make organizations more attractive to a broader audience."

Thursday, February 18, 2016

DisBeat announces first five 2016 #DisabilityVote initiatives

From DisBeat:
2016 is on track to become a historic election cycle for Disabled Americans. 
From live events –including the Road to Freedom Bus—to political action groups and viral social media campaigns, Disabled Americans are flexing their community organization and electoral power coast to coast through education, empowerment, and promotion of the 2016 Disability Vote. 
Collectively, this national effort of encouraging Americans with disabilities to engage in the 2016 Presidential Election will help ensure that the experience of 56.7 million Disabled Americans is reflected at this moment in American history. 
To participate in this national effort, DisBeat Announces First Five 2016 #DisabilityVote Initiatives. 
Full article can be found here
About DisBeat: DisBeat is a national communications initiative designed to coordinate and promote proactive messaging on disability rights issues throughout the country. DisBeat uses a variety of communication tools, including social media, to bring attention to disability issues from an authentic disability perspective. DisBeat also maintains a database of subject-matter experts, fact sheets and talking points on a variety of critical issues facing 56.7 million Americans with Disabilities. DisBeat is a project of The ADA Legacy Projects. Initial Partners include ADAPT of Montana, Center for Disability Rights, Disability Rights Center, Disability Visibility Project, EIN SOF Communications, Nothing Without Us Media, and Shepherd Center (http://www.adalegacy.com/disbeat).

Robots, video games create radical new approach to treating stroke survivors

The first part of The New Yorker article:


In late October, when the Apple TV was relaunched, Bandit’s Shark Showdown was among the first apps designed for the platform. The game stars a young dolphin with anime-huge eyes, who battles hammerhead sharks with bolts of ruby light. There is a thrilling realism to the undulance of the sea: each movement a player makes in its midnight-blue canyons unleashes a web of fluming consequences. Bandit’s tail is whiplash-fast, and the sharks’ shadows glide smoothly over rocks. Every shark, fish, and dolphin is rigged with an invisible skeleton, their cartoonish looks belied by the programming that drives them—coding deeply informed by the neurobiology of action. The game’s design seems suspiciously sophisticated when compared with that of apps like Candy Crush Soda Saga and Dude Perfect 2.

Bandit’s Shark Showdown’s creators, Omar Ahmad, Kat McNally, and Promit Roy, work for the Johns Hopkins School of Medicine, and made the game in conjunction with a neuroscientist and neurologist, John Krakauer, who is trying to radically change the way we approach stroke rehabilitation. Ahmad told me that their group has two ambitions: to create a successful commercial game and to build “artistic technologies to help heal John’s patients.” A sister version of the game is currently being played by stroke patients with impaired arms. Using a robotic sling, patients learn to sync the movements of their arms to the leaping, diving dolphin; that motoric empathy, Krakauer hopes, will keep patients engaged in the immersive world of the game for hours, contracting their real muscles to move the virtual dolphin.


Many scientists co-opt existing technologies, like the Nintendo Wii or the Microsoft Kinect, for research purposes. But the dolphin simulation was built in-house at Johns Hopkins, and has lived simultaneously in the commercial and the medical worlds since its inception. “We depend on user feedback to improve the game for John’s stroke patients,” Ahmad said. “This can’t work without an iterative loop between the market and the hospital.”
In December, 2010, Krakauer arrived at Johns Hopkins. His space, a few doors from the Moore Clinic, an early leader in the treatment ofAIDS, had been set up in the traditional way—a wet lab, with sinks and ventilation hoods. The research done in neurology departments is, typically, benchwork: “test tubes, cells, and mice,” as one scientist described it. But Krakauer, who studies the brain mechanisms that control our arm movements, uses human subjects. “You can learn a lot about the brain without imaging it, lesioning it, or recording it,” Krakauer told me. His simple, non-invasive experiments are designed to produce new insights into how the brain learns to control the body. “We think of behavior as being the fundamental unit of study, not the brain’s circuitry. You need to study the former very carefully so that you can even begin to interpret the latter.”
Krakauer wanted to expand the scope of the lab, arguing that the study of the brain should be done in collaboration with people rarely found on a medical campus: “Pixar-grade” designers, engineers, computer programmers, and artists. Shortly after Krakauer arrived, he founded the Brain, Learning, Animation, Movement lab, or BLAM! That provocative acronym is true to the spirit of the lab, whose goal is to break down boundaries between the “ordinarily siloed worlds of art, science, and industry,” Krakauer told me. He believes in “propinquity,” the ricochet of bright minds in a constrained space. He wanted to create a kind of “neuro Bell Labs,” where different kinds of experts would unite around a shared interest in movement. Bell Labs is arguably the most successful research laboratory of all time; it has produced eight Nobel Prizes, and inventions ranging from radio astronomy to Unix and the laser. Like Bell, BLAM! would pioneer both biomedical technologies and commercial products. By developing a “self-philanthropizing ecosystem,” Krakauer believed, his lab could gain some degree of autonomy from traditionally conservative funding structures, like the National Institutes of Health.
The first problem that BLAM! has addressed as a team is stroke rehabilitation. Eight hundred thousand people in the U.S. have strokes each year; it is the No. 1 cause of long-term disability. Most cases result from clots that stop blood from flowing to part of the brain, causing tissue to die. “Picture someone standing on a hose, and the patch of grass it watered dying almost immediately,” Steve Zeiler, a neurologist and a colleague of Krakauer’s, told me. Survivors generally suffer from hemiparesis, weakness on one side of the body. We are getting better at keeping people alive, but this means that millions of Americans are now living for years in what’s called “the chronic state” of stroke: their recovery has plateaued, their insurance has often stopped covering therapy, and they are left with a moderate to severe disability.
 In 2010, Krakauer received a grant from the James S. McDonnell Foundation to conduct a series of studies exploring how patients recover in the first year after a stroke. He was already well established in the worlds of motor-control and stroke research. He had discovered that a patient’s recovery was closely linked to the degree of initial impairment, a “proportional recovery rule” that had a frightening implication: if you could use early measures of impairment to make accurate predictions about a patient’s recovery three months later, what did that say about conventional physical therapy? “It doesn’t reverse the impairment,” Krakauer said.

Monday, February 1, 2016

Thalidomide’s been a silent voice in Britain's 'Call The Midwife' drama... until now

From The Sun in the UK:

WITH its mix of beautiful babies, heart-warming stories and tragic tales, Call The Midwife regularly leaves its viewers in tears.
But series five sees the cosy Sunday night show scale new emotional heights as it takes on its boldest storyline to date, becoming the first drama to tackle the tragedy of the thalidomide scandal.
At the end of series four, viewers were horrified to see Dr Turner, played by Stephen McGann, innocently prescribing the drug to a mother suffering from severe morning sickness.
In the new series, which is set in 1961, the doctor and his midwifery and nursing colleagues are distraught when limbless baby Susan is delivered after a hard birth.
She is among the 10,000 babies worldwide who were born with similar deformities after their mothers were given thalidomide in the late 1950s.
The drug had not been adequately tested and its catastrophic side-effects were not yet known.
Series writer Heidi Thomas — who is married to Stephen — told The Sun: “I was born in a Catholic nursing home and I was delivered by nuns.
“In the same week a baby was born in that same hospital minus all four of his limbs. I don’t know what became of him — I never saw a baby or a child answering that description where I grew up. I’d like to dedicate this episode to the memory of my little lost cradle-mate.”
Call The Midwife has been able to depict the thalidomide scandal, thanks in part to advances in digital technology that allow a limbless baby to be portrayed on screen.
Entirely prosthetic babies are often used for birthing scenes but Susan was partly a robotic model, with CGI giving the tot a real baby’s face.
Stephen, 52, who has played Dr Patrick Turner since series one, said: “When we first got the prosthetic it was named immediately. It was not going to be named ‘the prosthetic’ or ‘the prop’, it was to be named Susan, because that’s the baby’s name.
“Our little tribute was that it was always Baby Susan from the very first time we saw it. We just sat in silence for a minute and it was strangely very moving and I just said to Stella in make-up, ‘No one has ever done this before.’
“Thalidomide is the silent voice in drama until someone tells the story. This is the first time anyone has had the chance across the world, because the programme goes to 212 countries, and that’s what they’ll see and that’s what they’ll know. It makes me intensely proud.”
Other cast members admitted sobbing on set after being left so moved by Susan’s deformities.
Helen George, who plays nurse Trixie Franklin, said: “I couldn’t stop crying, it was raw and heartfelt.
“It was quite horrific because we had the baby in make-up for quite a long time. She had her own special box so it was always there in the background — awful to be around, really, and heartbreaking for the make-up team to have to make up.”
Emerald Fennell plays nurse Patsy Mount, who delivers the baby. She said: “The moment any of us are filming something sad, we are all moved and start crying.
“I’m just so surprised no one has ever done the thalidomide story before, because it’s such an enormously important story.
“My parents had friends who were affected by it and they have lived amazing and brilliant lives, even though it was so shocking at the time.”
Viewers will see the baby seconds after she is “born” and later as the nuns and nurses discuss how to dress the limbless child.
Charlotte Ritchie, who plays nurse Barbara Gilbert, said: “It was incredible to see the face of the baby superimposed on to that, I don’t know how they did it.
“The baby didn’t feel animatronic, it felt very lifelike. There were pipes and valves to make it breathe and move.”
Pam Ferris, who plays Sister Evangelina, is not involved in the Susan storyline but was still greatly affected by it.
She and co-star Judy Parfitt, who plays Sister Monica Joan, both had sisters who were giving birth at the time of the thalidomide scandal.
Pam, 67, said: “It’s Russian roulette, isn’t it? They may well have taken thalidomide and not known it, because what they were taking was not always mentioned. But their babies came out all right.”
She also recalls how the public’s attitude towards disability and deformity was one of fear and misunderstanding rather than compassion in the 1960s.
She said: “There was still some medieval attitude left, that it was the work of the devil and something gruesome that you could catch and was not nice to be near. Early on, there was this desire just to let the child slip away.
“You’d hide it away, you’d whisper about it. It took ages for it to be known that it was the fault of a specific thing.”
Jenny Agutter, who plays Sister Julienne, was shocked to learn that some thalidomide victims are still struggling to get compensation.
She said: “It’s extraordinary that the story isn’t quite finished yet.
“I hope it helps people understand the case — that there are people still affected by it.”
Although there have been plenty of documentaries about thalidomide, Stephen hopes that Call The Midwife will be able to portray the real human suffering as well as how people learned to adapt and find happiness despite their difficulties.
The programme makers were advised by the Thalidomide Society charity and nurses who delivered the babies in the early 1960s, and Stephen said: “When you do drama you don’t show them tables and dates, you show them how a nurse would react when they first see it.
“We’ve heard stories from nurses who were actually there, reacting to it. We’re bringing the history to them as feelings, like we’ve always done.
“If it gives closure, if it gives balance, if it gives respect, which is what should be given, then justice will be done.”
For writer Heidi it is all about giving a voice to thalidomide survivors. She said: “The people affected are still fighting for proper compensation.
“Yet it was obvious to me that people of the younger generation, including some of our own actors, didn’t know what had happened.
“At Call The Midwife that’s our dialogue. It’s the dialogue of real life, of the history of the 20th Century and with people who perhaps have never had a voice before.
ED FREEMAN, seen as a youngster in the main picture and above today, was born with shortened limbs after his mum Beatrice, now 91, took the drug for bronchitis.
Now 56 and chair of the Thalidomide Society, Ed helped the producers of Call The Midwife make the new storyline accurate.
He says: “I was one of the first few babies to be born affected. My mum has always felt so incredibly guilty. Even now she can’t stop blaming herself – a tragedy in itself.
“My dad joined the Thalidomide Society straight away. In 1974 he and Mum got £5,000 compensation each.
“I still see us as the lucky ones. I know so many other families ripped to pieces by this completely avoidable disaster – divorces, suicides, you name it.
“Until I was ten I had artificial limbs, but as I got older they weren’t much use – I couldn’t walk far.
“My teacher managed to get the local council to pay for an electric wheelchair, which was a complete life-changer.
“I’ve been head of the Society since 2012, helping share information. We also support the remaining parents and thalidomiders.
“ We want to stress that thalidomide wasn’t just given for morning sickness, it was sold as a “wonder drug” to help pregnant women with anything from anxiety to depression.
“Ours is a story that must never be forgotten.”
— For more information see thalidomidesociety.org.

Years of torment
1953 – Drug created by German firm Grunenthal.
1958 – Licensed for UK use.
1961 – Aussie doctor William McBride notices mums of deformed babies at his hospital had all taken thalidomide and writes to The Lancet. Drug withdrawn in the UK later that year.
1968 – UK distributors, now owned by Diageo, reach a compensation settlement.
1972 – Sunday Times publishes a front-page investigation by its Insight Team into the scandal and pushes for far more compensation. A total of £28million ends up paid during the Seventies.
2009 – Scientists at the University of Aberdeen finally discover how thalidomide causes limb defects, by preventing growth of blood vessels. The Government grants £20million to the Thalidomide Trust.
2012 – Grunenthal Group releases a statement saying it “regrets” the consequences of the drug it invented.