Time after time, New Yorkers with disabilities affected by disasters were locked out of shelters, couldn’t get out of high rises to get food, water, services or medicine, couldn’t use the transportation that everyone else used to evacuate, and couldn’t even get life-saving information. Now they can look forward important changes as a result of a landmark victory in CIDNY’s civil rights lawsuit.Federal Judge Jesse Furman agreed with plaintiffs including CIDNY, BCID, Tania Morales and Gregory Bell, that the City had not planned adequately for the needs of people with disabilities during disasters and emergencies, violating federal civil rights law. The judge instructed the plaintiffs from the disability community, represented by Disability Rights Advocates, and the City to negotiate remedies.On September 30, 2014, we delivered agreements to the Judge. Once these agreements become part of the City’s plan, New York City will be a national leader in emergency preparedness. The next step is creating and implementing a fully integrated plan of action in emergencies and disasters that include people with disabilities.Susan Dooha, CIDNY’s Executive Director, said, “Nearly 25 years after passage of the Americans with Disabilities Act, we have achieved a landmark decision to end exclusion of people with disabilities from the planning for emergencies and disasters. Finally, New Yorkers with disabilities will be able to evacuate to accessible shelters. They will get timely, appropriate information in ways they can use. No one will be left on the side of the road because of a lack of accessible transportation. We look forward to working with the Mayor and the City’s agencies to take these agreements from the page to the real world.”After lengthy negotiations, the disability community and the City have agreed on memos of understanding that will, in part, make sure that by 2017 the City will:· create a minimum of 60 accessible shelters throughout the five boroughs can serve approximately 120,000 people with disabilities;· create a canvassing operation that will go door-to-door to find people who need help getting resources like food, water, electricity and care;· develop plans for effective accessible transportation; and· create a task force to create a plan for high rise evacuation and power outages.At the same time, the City will create a Disability Community Advisory Panel that includes members of the disability community and will be consulted by the City in developing emergency plans. The City will also hire a top-level Disability and Access and Functional Needs Coordinator who will be the lead employee responsible for overseeing that the City’s plans meet the needs of people with disabilities and comply with state and federal law. If you would like more information or would like to be involved, contact Susan Dooha, email@example.com or call 212-674-2300.
Wednesday, October 1, 2014
No longer left behind--emergency preparedness planning in NY City will include people with disabilities due to landmark legal victory
Center for Independence of the Disabled, NY(CIDNY). Pictured is an inaccessible entrance to an evacuation shelter in NY City.
Posted by BA Haller at 10:41 AM
Monday, September 29, 2014
Lex Gillette, a Paralympic three-time silver medalist in track and field (pictured), can jump so far that it seems like he's flying. Because he is blind, Gillette relies on his other senses (and for the long jump, a guide) to help him. Soon, kids in classrooms across the country will be able to experience Lex's point of view while he trains and competes.
Classroom Champions, an organization founded by Olympic bobsled gold-medalist Steve Mesler and Leigh Mesler Parise, connects Olympic and Paralympic athletes with kids in high-needs schools to boost their confidence and help them set big goals. This month, the organization won one of five grants in Google's Giving Through Glass competition, which offered up a pair of Glass, a $25,000 grant, access to Google Glass developers, and a trip to Google HQ to the nonprofits who could best explain how they would use Glass to make an impact.
Classroom Champions' winning pitch: put Glass on athletes like Gillette, so students can see what a Paralympian experiences--and how their abilities, not their disabilities, shine through. "We'll have Lex spend a month or two with the Glass. We have various other athletes, and we'll let them play merry go round with the Glass," says Messler.
Before the competition, Gillette had never heard of Glass. "After I read about Google Glass and how we’re going to approach the situation . . . I’m a blind athlete, and to be able to wear the glasses and have the kids see through my eyes although I can’t even myself, that’s amazing to me," he says. I’m a jumper primarily. There’s a lot of things that go on with that, having someone basically directing me down this runway, and I’m running fast, he’s making calls on the fly. I think it would definitely be cool [for kids to] see how all of that happens, see what that would look like in a visual sense."
Gillette also hopes to take kids on trips through other aspects of his life, from the weight room to the beach. In early August, he'll start doing video introductions with various classrooms. He'll interact directly with a special group of kids, but everything Gillette records will also be available online.
When I spoke to them, Mesler and Gillette were gearing up for a trip to Google's campus. "It's a once in a lifetime opportunity," says Gillette. "It's huge not only for me, but for the students.
The other winners of the competition include The Hearing and Speech Agency, which will use Glass to improve communication for people with speech problems, hearing loss, and autism; and The Mark Morris Dance Group, which will create a Glass app to help Parkinson's patients trigger body movements.
Posted by BA Haller at 1:18 PM
Sunday, September 21, 2014
A national disability-rights group says it wants to sue the Little Rock Police Department over how officers handled two days of protests this week that resulted in the arrest of a number of demonstrators.
ADAPT, which is asking Arkansas politicians to support a program that would increase funding for disability services for Medicaid enrollees, said in a statement on its website that the arrests constituted a "new low in police behavior."
More than 50 protesters from the group have been arrested in demonstrations Monday and Tuesday in Little Rock, though all were cited and released. Four of them were arrested Tuesday afternoon along Capitol Avenue when they refused orders to get out of the street and onto the sidewalk, police said.
The ADAPT statement from group organizer Mike Oxford seemed to take issue with those arrests in particular, noting that the sidewalks in Little Rock are not ideal for wheelchairs and can cause them to "get stuck or tip over." Many of the ADAPT demonstrators and a number of those who have been arrested are in wheelchairs.
"We have repeatedly tried to explain to the Little Rock Police that the sidewalks jeopardize many people in our group," Oxford wrote. "Many of the officers have quietly agreed with us that they are a safety hazard yet the city and police administration insist that we must stay on the side walk 'no matter what.'
"We know ADAPT can be frustrating, but we don't understand the Little Rock Police’s unprofessional 'pay- back' attitude. It is clear we have angered you and you have decided to get even by threatening our safety, forcing us to use dangerous paths of travel, and violating our civil rights."
The statement says the group is now looking to file a class-action lawsuit for "massive, systemic violations of our civil rights under the Americans with Disabilities Act."
"We regret being forced to do this," Oxford wrote. "So many in the fine City of Little Rock have been so very friendly and helpful, but you leave us no other recourse when you bully us and endanger us."
A Little Rock Police Department spokesman said the department has acted appropriately in its interactions with the group.
"The Little Rock Police Department has and will continue to treat members of ADAPT with dignity and respect," Sgt. Cassandra Davis said in an emailed statement. "We have not been served with any lawsuits concerning our actions over the last two days."
ADAPT has been demonstrating to urge Arkansas lawmakers to adopt the Community First Choice Option, which was established under the 2010 Patient Protection and Affordable Care Act, often referred to as "Obamacare." The option, if adopted, would provide increased federal funding for state Medicaid programs for attendant services programs, which help disabled persons live more independently.
Posted by BA Haller at 8:35 PM
Monday, September 15, 2014
Washington-area disability-rights advocates this week filed a federal class action against the District of Colombia and its mayor, alleging the city’s emergency plan discriminates against people with disabilities.
The United Spinal Association and The DC Center for Independent Living, along with three Washington residents, seek declaratory and injunctive relief against the District and Mayor Vincent Gray, according to their complaint.
“What I would like is for the judge to realize that the D.C. emergency plan is lacking and that there do need to be changes made to the program so it can serve members of the community,” said Alexandra Bennewith, vice president of government relations for United Spinal. “That’s the whole point. There is not a plan right now.”
The lawsuit, which mirrors similar suits against New York City in 2013 and Los Angeles in 2011, alleges Washington’s emergency response plan violates the Americans With Disabilities Act (ADA), Section 504 of the Rehabilitation Act of 1973 and the D.C. Human Rights Act, Bennewith said.
According to the complaint, Washington’s District Response Plan, drafted by the Homeland Security and Emergency Management Agency, “has failed to adequately plan to meet the needs of its approximately 72,000 residents with disabilities.”
A 2010 agency report states it worked with Washington’s Office on Disability Services to “ensure awareness about the city’s emergency response plan.” An agency checklist urges disabled people to stockpile money and medication and keep friends on speed dial in case of a disaster.
“That is not an emergency plan any way you look at it,” Bennewith said. “We do have many events where we bring our members into D.C. God knows what would happen if there was some type of emergency that wouldn’t be able to handle all of those folks.”
The agency and D.C.’s Office of the Attorney General declined to comment.
U.S. District Judge Jesse Furman in New York ruled in November 2013 that New York City’s emergency plan violated the ADA, Rehabilitation Act and the New York City Human Rights Law. Disability-rights groups filed the class action following Hurricane Sandy (pictured).
According to court documents, Furman ruled the city failed to make disaster centers accessible to disabled people; draft and execute an escape plan for disabled people stranded in high-rise apartments; and educate and inform disabled people before and during an emergency.
In February 2011, U.S. District Judge Consuelo Marshall in California ruled the emergency response plan for the city of Los Angeles violated the ADA. Disability-rights groups sued the city in 2009.
“Because of the city’s failure to address their unique needs, individuals with disabilities are disproportionately vulnerable to harm in the event on an emergency or disaster,” Marshall wrote in her ruling.
Aaron Gallaher, a spokesman for the Florida Division of Emergency Management, said emergency-planning agencies closely followed damage from Hurricane Sandy and the New York disaster lawsuit ruling.
“When things like that happen, every emergency management agency becomes introspective,” Gallaher said. “It didn’t change what we were doing, but it did cause us to be a little more self-scrutinizing.”
Michael McManus of Drinker Biddle & Reath and lead attorney for the plaintiffs in the suit filed this week, said the District—which was a target on 9/11—is at risk for disasters.
“If you had ever told me I was going to be truly scared to die on the 11th floor of my office building on 15th Street, I would have told you you were crazy,” McManus said. “I never expected to see an earthquake in Washington. … But that happened.” (An earthquake rattled the Washington metro area in August 2011.)
McManus expects other cities to adopt disability-friendly plans after rulings in Los Angeles, New York and D.C.’s pending suit, he said.
“Not a lot of additional resources need to be spent, Just time and attention,” he said. “There is no consideration given to disabled people.”
Posted by BA Haller at 6:17 PM
Thursday, September 11, 2014
For RJ Mitte, playing Walter White Jr. in AMC's "Breaking Bad" was art imitating life.Like the 22-year-old actor, his character had cerebral palsy — just a more severe case, requiring Mitte to learn to walk on crutches and slow his speech for the role. Mitte says he also had to revisit some of the challenges he faced growing up, which served as "a great reminder" that helped him win the part."The past does haunt you, but it haunts you for a reason: to remind you of the mistakes and actions you've made along the way and you have to grow from those actions," he said.Mitte says those experiences enabled him to bring something to the role that others couldn't."My disability has given me so many things that people will never understand unless you have it," he said in a recent interview. "Unless you've been through the physical therapy, unless you've been (through) the sweat, the tears, the family problems, the family struggles, but wondering how you're going to get that HMO, wondering how you're going to get those medical bills. You develop a different mentality and you develop a different look at how the world sees you and how you see the world."Mitte isn't alone in winning roles that reflect his life: In his recently canceled sitcom, Michael J. Fox's title character had Parkinson's disease, as he does, and both "Glee" and "American Horror Story" feature actresses with Down syndrome.Since the "Breaking Bad" finale, Mitte has played a wheelchair-bound character who suffered a spinal cord injury. He says other roles he's taken on include that of a young man with muscular dystrophy and another where he was "a bit mentally unstable.""I'm not going to say that I don't get typecast from time to time but those are real characters," says Mitte.
He says that while he realized there is "an opportunity to learn something from these characters," he just likes to have a good time with the roles, adding that "at the end of the day you have to have fun with it because this business is stressful enough not to enjoy what you do."
Posted by BA Haller at 12:05 PM
Wednesday, September 10, 2014
Co-founder of British comedy troupe Abnormally Funny People says humour a seriously powerful tool for changing attitudes
The Guardian in the UK:
Simon Minty (pictured) defies convention in all kinds of ways. Best known perhaps as the cofounder of the comedy troupe Abnormally Funny People (AFP), a collective of mainly disabled comics and actors that's been around in various guises for almost a decade, he is also a former high street banker, an entrepreneur and a disability consultant. And he is charting new territory once again with the launch of a comedy podcast.
Featuring disabled actors, comics "and generally interesting people" as guests, the AFP podcast, he says, is not trying to change people's beliefs. "This is first and foremost comedy. I want lots of disabled people to listen to it, but I also want it to be accessible to everybody so that people think, 'You know what? This is a different, quirky thing.' The hope is the podcast might be another step towards ensuring more disabled actors and comedians are in the mainstream of entertainment."
After two experimental runs, the inaugural podcast, Girls Just Wanna, is out this week. With guests actor Lisa Hammond and model and lawyer Shannon Murray, September's one-hour "discussion" touches on everything from being pointed at in the street to dating.
Minty, 46, sees humour as a powerful tool to relax people about an awkward subject, and is determined that the podcast should not be pigeonholed as "earnest" or "lecturey".
When asked if he ever dreamed he would have so many strings to his career bow, and that one of them would be comedy ("my evening job"), Minty says he used to be envious of a pal who always seemed to go to bed late and get up late and thought: "How can I work that out?"
Minty's funny bone is never far from the surface, but that's not to say he doesn't do serious. For a start, he says that grappling with issues such as discrimination and inclusion in a comedy context can be illuminating. "We will talk on the podcast about the Independent Living Fund, or about access to work. These are massive things that are having a huge impact on disabled people. Assisted suicide is another topic.
Sometimes we throw in a random gag because we can. Sometimes you need to prick the tension a bit.
"I think a good chunk of disability comedy is taking the mickey out of people who aren't disabled and how they behave. It's lovely, because the non-disabled person says: 'Oh yeah, that is me, but they're not being horrible to me'. So they laugh at their own behaviour, but they also learn from it."
On wider disability rights and social justice, Minty has achieved a substantial amount through his consultancy work over the past couple of decades. He advised a number of large companies, including banks, on how to implement requirements of the Disability Discrimination Act after it was introduced in 1995. While he doesn't describe himself as an activist, he is close to many campaigners and is vocal on a range of issues.
"It disappoints me hugely that the act has been in place for coming up to 20 years, yet the unemployment rate for disabled people has remained pretty level," he says. "That really devastates me. As for the whole idea of 'disablism', people don't even know what that means – it's like a made up word for them. It's going to take another 10 years before they even get the concept."
Referring specifically to disabled people in the workplace, he adds: "There are little moments 15 years later where I see companies slipping back a little, and I just think: 'Did we really make an impact?' And then there are other areas where we've come on in leaps and bounds."
Minty speaks admiringly of the enthusiastic supporters within companies, as well as across media and entertainment, who have helped drive progress alongside the activists and advocates. All of this gives him cause for optimism. "Five years ago, no one was talking about mental health in the workplace – now everyone's talking about it. Learning disability was something else that people didn't do, and now there's a huge amount of work on it."
He says the portrayal of disability on screen has come a long way since he was a boy and people of small stature were almost always depicted on TV and in films in a negative or derogatory way that horrified him. "They were dressed up as some freakish clown or an alien … or were the butt of a very poor joke. It used to make me flinch." But even if things have improved, he nevertheless cautions against complacency. "What you have to be very careful of is that organisations will say: 'Oh, we're doing our week of …' and that's it for the rest of the year."
He applauds recent moves by the BBC to introduce new "diversity targets" throughout the organisation, including for disabled people. He was consulted by the director general, Tony Hall, while the policy was being drawn up. Asked if he worries about it being a potential box-ticking exercise he says that, done well, it can constitute effective auditing. "So long as it's lots of boxes and you do it regularly."
He would like a version of the podcast to transfer to radio or TV, but the bigger picture is never far from his mind. "What I sometimes wonder about media and other organisations is that they say: 'Oh, we can't do that – we're worried about tokenism', and I say: 'Yeah, but that means you won't do anything!' Sometimes you just need to force it."
Posted by BA Haller at 11:16 AM
Friday, September 5, 2014
The NY Times review:
With “Rocks in My Pockets,” Signe Baumane presents a sharp, surprising and funny animated feature, plumbing the depths of depression via her family history. Guided by Ms. Baumane’s almost musically accented voice-over, this hand-drawn debut feature is based upon the mental struggles of her Latvian grandmother and other relatives. It’s told with remorseless psychological intelligence, wicked irony and an acerbic sense of humor.Part questioning of received family mythology, part anatomy of melancholy, this idiosyncratic film treats what might seem to be unapproachable subject matter. But Ms. Baumane’s wry storytelling and keen figurative visuals produce an engaging act of empathy across generations. With deceptively plain drawings and some papier-mâché, the story depicts her grandmother’s thwarted sense of self during her marriage to a charismatic, failed entrepreneur, who fathers her eight children. There follows a daisy chain of tales about sufferers and suicides in what Ms. Baumane describes as her beleaguered gene pool.Miraculously, the film never sinks into bleakness, and that’s largely because of Ms. Baumane’s tendency to speak her mind, sometimes unpredictably. Her family’s sense of practicality is repeatedly rivaled by the cruel pragmatism of survival necessitated by mental illness: the “darkness visible” (as William Styron called it) that can remain invisible to others for reasons of ignorance or denial.The bravery of Ms. Baumane’s own coping methods (which some may disagree with) brings her tough-minded film to a cleareyed, forward-looking conclusion that doesn’t lose sight of her demons.
Posted by BA Haller at 8:03 PM
The OWN website for "The Specials."
Welcome to the ordinary life of some extraordinary kids in Britain.
This sensitive, touching show, which began as a prize-winning British Web series, is about a group of mentally challenged young people living in a supervised home in Brighton.
And of course, hanging out together just as if this were "The Real World" or -- where are the sands of yesteryear! -- "Jersey Shore."
They sing at karaoke clubs, vacation in Malta, date and break up. The difference is the more you know them the more you feel for them and appreciate their company.
This airs as a marathon, by the way, so program the DVR. (OWN Sept. 7, 2:30 p.m.)
Posted by BA Haller at 2:17 PM
Thursday, September 4, 2014
The Boston Globe:
The helper first wrestles Ryan DeRoche’s clenched left hand, then his stiff arm, into his coat sleeve.DeRoche’s right arm also refuses to bend, rigid from a bike accident three years ago that battered his spinal cord and paralyzed much of his body.
Now the real battle of friction and patience begins. The black coat is taut, stretched across DeRoche’s back as he sits in his power wheelchair. He encourages the helper to push his other arm through the second sleeve. “You won’t hurt me,” DeRoche, 32, tells her, a student named Kira Bender. She pulls, pushes, tugs. “Go, go, go, go, go!” DeRoche urges. Finally, success. “You got it,” he cheers.
Total time elapsed: four aggravating minutes.
Nearly a quarter-century after the Americans with Disabilities Act made buildings, jobs, and phones more accessible, most clothing is still as inaccessible as ever. Pants are designed to fit — and look best — when wearers are standing, not sitting in wheelchairs. Zippers, buttons, jewelry clasps, tight-fitting dresses, and jackets with linings are daily grievances for anyone with limited dexterity. Some prosthetic limbs chafe against — or do not fit beneath — clothing designed for able bodies.
It is exactly this problem that DeRoche has asked the new MIT Open Style Lab to fix. His team includes an engineering student, a design student, and Bender, a Boston University master’s student in occupational therapy. The goal: Create a coat that fits his needs.
The Style Lab is the brainchild of Grace Teo, who received a PhD from MIT in medical engineering this spring. She and co-chair Alice Tin chose 24 students from MIT and other colleges, creating eight teams to design clothing for clients with amputations, spinal cord injuries, early-onset arthritis, and other disabilities.
For DeRoche, finding an accessible jacket is more than a matter of convenience. Like many quadriplegics, he is vulnerable to pneumonia. Sometimes he endures the cold rather than tussling with a coat.
“This may be one of those new frontiers,” said Oz Mondejar, senior vice president of mission and advocacy at Spaulding Rehabilitation Network. “It’s still not there. It takes advocacy.”
Mondejar, who was born without a right hand, knows well the frustration of inaccessible fashion. His job requires him to wear a tie, and he struggles every morning to fasten the tight neck button on his dress shirt with one hand.
The few companies in the US that design accessible clothing tend to target the elderly market. One of the Style Lab’s clients, a professor who uses a wheelchair, cannot find formal clothing that allows him to use the bathroom independently.
“There’s a couple of companies that make clothing and it looks horrible,” DeRoche said. “It’s like granny pants. They have elastic waistbands.”
The lab, created by Teo and Tin, was launched with funding from MIT and private donors, including Eileen Fisher, the women’s clothing company. Each team is given $500 to develop its project. The students are not paid, but they hold the patents and can market the clothing that they develop.
Teo and Tin hope to repeat the program, which meets on Saturdays during the summer, next year. The students, who work with mentors, made their final presentations at MIT Aug. 16 and will discuss their designs at the Museum of Science in October.
One of the Style Lab’s clients is Mike Benning (pictured), whose left arm was amputated below the elbow to remove cancer when he was 14. Last year, he was fitted with the most technologically advanced prosthetic hand in the world. Now he can use a touch-screen phone, type on a computer, and hold a nail while he hammers it.
Still, there have been some problems. When Benning — the business development manager of Hanger Clinic, which provides orthotic and prosthetic devices — puts on a coat, the sticky silicone of his new hand gets caught in the lining.
First, his team tried, unsuccessfully, to find a fabric that wouldn’t stick. Then, with a 3-D printer, they created a sheath for his hand that kept the silicone away from the coat. The team is working with a lawyer to patent their inventions.
Electrodes rest on the skin of his residual limb, receiving impulses from his nerves and relaying them to the prosthetic hand. Problems arise when he sweats and the moisture interferes with the electrical conductivity. He might try to open his hand, and instead, his wrist might rotate. So the team has created several devices, including one that would wick moisture away from the skin.
“I think if [the Open Style Lab team] can come up with a solution to this and improve it, it has the potential to improve the lives of millions around the world,” Benning said.
Barbara Harrison, another Open Style Lab client, underwent a voluntary amputation in 2013 after she suffered through three years of intense pain when a broken foot never healed properly. A half-dozen specialists could not ease her agony.
After the surgery, she spent a few weeks at Spaulding. She picked out a prosthetic leg with a swirly blue pattern called “Groovy.”
“Spaulding did a very good job of teaching me how to transfer from chair to wheelchair, and how to use the walker, and how to get dressed,” she said. “Clothes should have been the easy part.”
Instead, she struggled to find pants that fit over the device and could be pulled up over her knee to adjust Groovy during the day. It was easier to wear shorts or capris, so all last year, even through the iciest days of winter, that is what she did. But, she notes, “I can’t go to church in shorts.”
One Tuesday night this summer, Deniz Aksel and Niki Patel ring the doorbell of her first-floor apartment in Winthrop, bringing the newest version of one of their prototypes.
Aksel, an MIT engineering student from Turkey, and Patel, a graduate student in occupational therapy at American International College, have brought Harrison their invention: a fabric device that wraps around the top of Harrison’s prosthetic, secured with velcro, to help her pants slide over the device. They call it the Prosthetic Ridge Guard, or PRG. Patel sits on the floor at Harrison’s feet and helps her put it on.
“How’s that feel?” Aksel asks. Harrison walks around her living room.
“It’s not bugging me!” she says, surprised.
Responds Aksel: “That’s what we want to hear.”
Aksel has been grinning impishly all night about “some crazier ideas” the team has been planning. One, he says, is a device that, with the flick of a switch, will automatically roll up pant legs.
“Oh, that’s awesome!” Harrison says.
On a rainy Saturday afternoon, the eight teams meet at MIT to discuss their projects. Bender speaks about Team Ryan’s progress.
“Ryan, as you can see, is a young and fashionable guy,” Bender begins, smiling at DeRoche, who sits off to the side, wearing black spike earrings, a blue T-shirt, and shorts.
“Rain is one of the things that especially bothers his skin,” she said. “First when we met Ryan, he described the sensation of rain on his skin as needles.”
The team designed a jacket — they call it the Rayn Coat — that is waterproof and zips in the back so it can slip more easily over his arms. They attached a tether with loops to the zipper, long enough to pull to the front so DeRoche can adjust it himself. A pocket in the front protects his cellphone.
One improvement, though, is already clear. Total time to put on DeRoche’s coat: one minute.
Posted by BA Haller at 8:36 PM
Wednesday, September 3, 2014
BERLIN — Germany has inaugurated a memorial to more than 200,000 people with physical and mental disabilities who were killed by the Nazis after their lives were deemed "worthless."
The memorial in Berlin is close to monuments to the Jewish Holocaust victims and to the Nazis' gay and Gypsy, or Roma, victims.
The 24-meter (79-foot) blue glass pane stands on the site of a villa where the mass murder of patients at hospitals and mental institutes was coordinated starting in 1940. The euthanasia program's methods included using gas chambers.
Sigrid Falkenstein, whose aunt was killed in 1940, said Tuesday it was "a technology of killing tested and carried out for the first time on defenseless, sick and disabled people, a test run for all the Nazis' following programs of mass eradication."
Posted by BA Haller at 9:23 PM
Thursday, August 28, 2014
Chip Reece crowdfunded the extremely personal and inspirational tale of Metaphase. Teaming with Kelly Williams, Reece is building a world featuring a superhero with Down’s Syndrome in an original graphic novel unlike any other. Reece was kind enough to give us the scoop on the story, the campaign, and more below. (The graphic novel is out fall of 2014.)
Aaron Long: Let’s start at the beginning. How did Metaphase come to be?
Chip Reece: Basically, I was inspired by my son Ollie, who has Down’s Syndrome, and his superhero-like strength through several major medical ordeals, including three open heart surgeries. When I started to dig for comic book characters he could relate to as a person with Down’s Syndrome, there wasn’t much out there, and absolutely no superheroes. I found this odd, given how much my son and other kids with Down’s Syndrome go through. 50% of all kids born w/ DS have congenital heart defects (Ollie had two), one scary health fact out of many. I wanted my son to have a comic book character that was like him, heroic, inspirational and full of endless potential. That’s when I started to pursue the idea.
Getting to where we are now is part luck and part working with really great people. Initially the idea was to make it for my son, and share it with the people that I know. I showed the script to the artist, Kelly Williams, and we began to make plans to create a 10 page comic. A chance conversation with Peter Simeti, Alterna Comics publisher, turned into him offering to take the book on and encouraging us to put what we had together for ComiXology’s 2013 Free Comic Book Day event. The exposure there has been a big help leading up to this Kickstarter launch.
AL: Can you describe the world of Metaphase?
CR: The world’s seemingly all-powerful superhero has a son who is his physical opposite. Ollie is born with heart defects and Down’s Syndrome and so his dad becomes overly protective, holding his son back from pursuing his dream of being a hero just like his dad. This frustration will lead Ollie to pursue the hero business on his own, with the help of a company that claims it can give anyone superpowers through chromosome tampering. His dad’s reluctance to let him pursue his dream ends up creating a situation that his super-dad can’t handle, leaving his fate in the hands of Ollie.
AL: What will Super Ollie be up against in Metaphase? Can you discuss what he will be facing in this 70+ page adventure?
CR: Really, the biggest thing Ollie faces are the limits that are assumed of him. The person Ollie looks up to most, his dad, doesn’t fully believe in his potential because he’s scared he’ll get hurt. There’s a nasty villain in the mix of it (because what kind of superhero book would this be without it?) but at the heart of things, it’s really about showing the world that individual’s with Down syndrome aren’t defined by limits.
AL: Are there plans to produce more Metaphase issues in the future? Or is this a completely self contained story?
CR: I’d love to, but I don’t want to get too far ahead of myself. The story works as a stand alone, but is definitely open for creating more. I’ve thought that it would be awesome to get Ollie involved somehow as he gets older. Give him some input into future stories. We’ll see!
AL: Your Kickstarter campaign is online right now. Can you discuss what rewards are available for backers?
CR: There’s a great range of prices for the tiers we have available. For those looking for the cheapest way to read the book, they can pledge $10 for digital only or $15 for a print version with Kelly William’s wraparound cover. Higher incentives include a variant cover by legendary TMNT artist/writer Jim Lawson, “High Five” editions where my son puts his hand print in the book, some original artwork, and even as high as an Alterna Comics bundle that includes 27 graphic novels from their library!
AL: Any final words for Comicosity’s readers regarding Metaphase?
CR: I appreciate Aaron and Comicosity giving Metaphase the time of day. I believe diversity in comic books is important and this is an area that’s seriously lacking. Most of all, coverage like this goes a long way for raising awareness about individuals with Down’s Syndrome and the things they can do. This includes things like running restaurants, climbing Mt. Everest, and giving inspirational speeches. They can even be our heroes. Thank you!
Posted by BA Haller at 4:36 PM
Wednesday, August 27, 2014
US magazine. Video of Chris Burke discussing his acting work.
Chris Burke is thankful for his TV past — and especially the message it gave to the world. The actor, who has Down syndrome, opened up about playing the groundbreaking character Charles "Corky" Thacher in Life Goes On during an upcoming episode of Oprah: Where Are They Now? on OWN.
"It's real great to be known on TV. I had the opportunity to do something that I always wanted to do, and now I have done it," Burke, nearly 49, explained.
"It really shows we all have different talents, and stick at what you're good at," he continued. "It's not about performing disabilities. It's about performing abilities. That's the message."
Life Goes On aired for four seasons from 1989 to 1993 and was the first primetime television show to feature a main character (Burke) with a genetic disorder. The series also starred Bill Smitrovich, Patti LuPone and Kellie Martin.
Burke continued to work in TV with appearances in Promised Land, Touched by an Angel, The Division and ER. His most recent work was playing a custodian in the film Mona Lisa Smile in 2003. He's currently the Goodwill Ambassador for the National Down Syndrome Society.
Burke's Oprah: Where Are They Now? episode airs this Sunday, Aug. 24 at 9 p.m. EST on OWN.
Posted by BA Haller at 10:04 PM
Thursday, August 21, 2014
A deaf-blind attorney who made Business Insider's 2013 list of the 20 most impressive Harvard Law students is now fighting for the rights of blind readers in a lawsuit against digital subscription reading service Scribd, seeking equal access for the blind.
Haben Girma (pictured) made Business Insider's 2013 list for her work advocating on behalf of people with disabilities. Now, at 26, she is continuing her efforts as a Skadden Fellowship Attorney with the nonprofit law firm Disability Rights Advocates. There, Girma is representing the National Federation of the Blind (NFB) and blind Vermont mother Heidi Viens in a lawsuit against Scribd for allegedly depriving blind readers access to its online services in violation of the Americans with Disabilities Act.
Girma, deaf-blind since birth, fought on her own behalf for equal access as an undergraduate at Lewis and Clark College, where she clashed with dining hall staff who regularly failed to email her dining hall menus in advance so she could read them on her computer using special screen reading technology. “I told the manager that if he would not send emails consistently, I would sue. To tell you the truth, I had no idea how I would do that,” Girma said at a 2014 TEDxBaltimore event.
Business Insider followed up with Girma recently about the case against Scribd, which she considers her favorite since graduating from Harvard Law.
Scribd charges subscribers a monthly fee of $8.99 for unlimited access to its collection of more than 40 million titles through its website and apps, as well as the opportunity to publish their own works through Scribd. But Scribd is not programmed to give access to blind readers, according to the plaintiffs' July 29 complaint. That's because it's allegedly not designed for use with screen access software, which vocalizes visual information or displays it in braille for blind people to read.
The complaint alleges that Scribd discriminates against blind people by denying them full and equal access to its services in violation of the Americans with Disabilities Act.
This case is one everyone who reads can relate to, Girma said. "I think it sounds like a great service, and I think just like everyone else in the world, when you hear about a great service and then you realize you can't use it you're disappointed and frustrated. And it's not fair," Girma told Business Insider in a phone interview this week with the help of an interpreter. "Everyone wants to read, which is one of the reasons I really like this case — everyone can relate to the need to read for fun, for work, for school."
Her expertise in the case extends beyond her knowledge as an attorney to her personal experiences with her disability.
"I found that as someone who is blind and deaf I have specialized knowledge about the tools and services and needs of this community and I bring that knowledge to my work," Girma said. "So that is an advantage I have over other lawyers and that is one thing that helps me in representing the National Federation of the Blind, that I have this knowledge about technology and techniques and the needs of the blind community."
Girma attributes her success at Harvard and as a professional to the right attitude, training, and tools, which can allow all people with disabilities to compete equally with their nondisabled peers, if given equal access to informational and educational services like Scribd. "There have definitely been times in my life where I encountered something and I'm not sure exactly how I'm going to do it, but I adopt the attitude that I'm going to try to find a way to make this work," she said. "And I think about tools, whether it's braille or screen readers or a guide dog or a cane, to accomplish what I need to do."
But Scribd's inaccessibility to blind readers deprives them of the ability to compete equally with their nondisabled peers, the lawsuit alleges. "Scribd's inaccessible reading services gratuitously exclude the blind from having access to information that is critical to education, employment, and community integration," the complaint said.
Prior to the lawsuit, the NFB reached out to Scribd about its alleged inaccessibility but Scribd made no commitment to resolve the issue, according to the complaint, which cites iBooks as one example of a digital reading service that has been programmed with screen access technology allowing blind readers to independently access and choose titles.
"Scribd could potentially win thousands and thousands of new subscribers if they took the time to make their service accessible, and it could be very easy," Girma said.
Business Insider reached out to Scribd for a comment on the lawsuit in its early stages. "We're currently reviewing the allegations with our legal counsel in order to determine the appropriate next steps," said Scribd CEO Trip Adler in his statement emailed to Business Insider.
Posted by BA Haller at 6:14 PM
Tuesday, August 19, 2014
For Robert Kingett (pictured), a young blind man based in Chicago, fun includes playing video games and watching movies.
Luckily, in this day and age, adaptive technology allows blind people the opportunity to enjoy many pastimes the rest of us take for granted.
Descriptive audio is a feature available in some theaters and on select DVDs which can allow the blind to follow the storyline of a film along with sighted film buffs. Descriptive audio is exactly what it sounds like: if a film's leading lady slaps her cad of a boyfriend (or girlfriend) in the face, a narrator will quickly, in between dialogue, say "she slaps his/her face."
With Netflix poised to become one of the largest home video providers through online subscriptions, Kingett is publicly challenging the Bay Area-based video streaming company to make its content accessible to the blind and visually impaired through what he calls the Netflix Accessible Project.
Kingett spoke to SF Weekly about this daunting task, and about his life as a gay, blind, and physically disabled man who is nonetheless making his mark on the world.
SF Weekly: Describe your campaign in your own words.
Kingett: The Accessible Netflix Project is a campaign to make Netflix more accessible to blind people and to people using adaptive physical devices as well. A lot of people believe we are all about audio description and nothing else but that's far from the truth. We are a group that demands that Netflix do what should have been done a long time ago and make the screen player fully available to screen readers. Make the iPhone application accessible. Add audio description to their streamed shows and movies when its already on DVDs and TV shows. We are a team who says this should happen because there's no excuse anymore and it's long overdue. We are also reaching out to others like Hulu, Blockbuster Instant, Amazon Instant and even services in the UK.
People are using the internet more and more to watch movies and TV shows. If audio description is already available on DVDs and TV shows than just put it on the server. It's not hard to do and it's a shame it isn't happening. We're here to make sure it happens even if it takes us years.
SF Weekly: Have you heard from Netflix?
Kingett: We have heard from Netflix and they have told us that it's not their responsibility. Another time they told us "don't expect this anytime soon". In PR speak that basically means "we won't do it, so shut up and go away."
SF Weekly: Can you tell us more about who you are?
Kingett: I attended the Florida School For the Deaf and Blind. I was a premature baby, only six ounces, so I guess you could say that I brushed against death and turned around and kicked it square in the jaw. My lungs weren't developing, so the doctors had to place me in an incubator. They didn't monitor the oxygen very well, so as a result I'm legally blind. I'm guessing the cerebral palsy developed from me being born way earlier than I should have been. I guess my birth was epic foreshadowing, because it certainly gave clues as to what kind of fighter I was.
I wrote all the time, and not just in one style either. I wrote all kinds of things from book reviews to essays to letters to persuasive arguments, even at a younger age. I read books like people eat food. That was my outlet: reading, writing and video games.
I created a paper at the blind high school that is continued to this day.
SF Weekly: Your Facebook page makes us think you're also a comic book and sci-fi fan.
Kingett: I was, and am, your typical white and nerdy guy. I was, and am, very much into books and video games. I'm skinny, and I still watch Pokemon and Yu Gi Oh as an adult. I'm proudly a nerdy gay guy and my husband will just have to deal with that and bake me cookies now and then, and read me books, too. Man, is he going to have a rough life!
SF Weekly: Do you think people have become more sensitive to the needs of the blind and disabled? Where might there be room for improvement and what can be done to make things better?
Kingett: People are more sensitive to the blind and disabled but there's still this huge lack of awareness and I don't know where this ignorance comes from. There have been countless examples of disabled people doing things that people say we can't do, such as writer, journalist, doctor, social worker, IT Tech Personnel, but there's still this huge ignorance everywhere you look.
The biggest improvements need to come in the form of employment and media. I don't see disabled people in ads, or disabled actors and actresses starring on TV, in movies or in commercials. If there is a disabled character in a movie, it's usually played by a person who just looked up disabled on Pediatric.
SF Weekly: The 25th Anniversary of the Americans With Disabilities Act passed a few weeks ago. What does the ADA mean to you?
Kingett: The ADA has given the disabled the power to tell people what is what and I believe that kind of motivation is huge. It's letting others know who disabled people are. Let's them continue to promote the ADA and display what the ADA stands for. I've had employers not hire me because I'm disabled. We've all had that in the disabled community, so the ADA means a lot to me now and in the future because soon that will no longer be an issue.
SF Weekly: You will be continuing with the Netflix campaign?
Kingett: We have tried several times to contact the studios of movies and TV shows. It's hard to get names and email addresses of the people we need to talk to. That requires a lot of digging on LinkedIn. Voicemails are never returned. Also, when you have a stutter, people are not very patient. So when I try to make a call, I'm told they don't have time to talk to you and I'm hung up on A LOT.
We did break through one time, though. Fox, the network which does Family Guy, had an assistant producer talk with her team about sharing the audio description files with Netflix. Netflix could have the files if they just asked for it. Netflix never did ask for it and have ignored our emails ever since.
Posted by BA Haller at 7:47 PM