Friday, April 18, 2014

Boston Marathon bombing survivors spur advances in prosthetics

From Discovery News. In the picture, Roseann Sdoia, a Boston Marathon bombing survivor, tries out a new leg at Next Step Bionics, Inc. in Newton, Mass.

When bombs rocked the Boston Marathon last year, emotional reverberations were felt throughout the country: Communities held memorial races and sported Boston Strong ribbons and shirts, created makeshift memorials out of running shoes and American flags, donated money to families of injured runners. Engineers, meanwhile, got down to the nitty-gritty: Building better prosthetics for the 16 survivors who lost limbs that day.

"I think Boston raised awareness and is kind of inspiring for promoting recovery instead of focusing on the injuries," said Levi Hargrove, Director of the Neural Engineering for Prosthetics and Orthotics Laboratory at the Rehabilitation Institute of Chicago. Even though his lab hasn't worked directly with survivors, everyone in the field has felt the impact, he said.

"The survivors are getting back to their lives, working with scientists and therapists, because they're going to be living with this condition for a long time," Hargrove said.

For a month, Pierpaolo Petruzziello's amputated arm was connected to a robotic limb, allowing him to feel sensations and control the arm with his thoughts. 
Last month, one of those survivors took the stage at TED2014 and showed off her first-of-its-kind bionic leg that allows the professional ballroom dancer to rumba again. After Adrianne Haslet-Davis danced, she tearfully thanked Hugh Herr, director of the Biomechatronics Group at The MIT Media Lab and creator of the leg.

"All this emotion poured out," Herr said. "The very first time she [tried the new leg], she was ecstatic. She was so joyful about being on that dance floor and feeling that freedom again."

Herr, whose lab partnered on a fund to support the development of specialized prostheses for runners after the Boston attack, based Haslet-Davis's leg on data he gathered from dancers of a similar build and body type to Haslet-Davis's. He invited the dancers to his lab, which was tricked out with sensors to track exactly how they moved and how their forces impacted the dance floor.

The idea, he said, was to extract those principles of dance and imbed them into chips on the bionic limb.
"It's responsive in a way that's appropriate biomechanically," he said. "It doesn't simply output a traditional trajectory that she would have to keep up with like a wind-up toy. It's more like she is the lead and the limb is the partner."

The leg also has to be able to move like flesh and bone, so the lab uses a "smart" material that can flop and stiffen depending on the voltage being applied from the body.

David Sengeh, a graduate students who also works in Herr's lab, recently won the Lemelson-MIT National Collegiate Student Prize Competition for his work on improving the sockets used in prosthetics.

Conventional molding methods often result in prostheses that don't fit precisely, and often cause pain. Sengeh uses MRI and a 3D printer to create a design interface based on individual data.

"The goal is to make a model where you can enter someone's data, press play and get a comfortable socket," said Sengeh, who tested the method on one of the Boston survivors.

The end result? Without the short skirt she wore at her TED performance to show off the leg, it may have been impossible to tell she wasn't born with that leg.

Wednesday, April 16, 2014

In California, BART passengers with disabilities to protest new less accessible BART trains

From The SF Weekly:

Not everyone is excited about the brand new fleet of BART cars that's supposed to make your commute quieter, more comfortable, and less smelly.

BART riders with disabilities say the new fleet -- expected to roll out in the next two years -- actually offers less access for them. Specifically, the new design has added handhold poles in the middle of the entry ways, giving standing passengers something to hang onto while the train is moving.

But that pole is blocking the ability for wheelchair users and other riders with disabilities to access handicap seating, says Jessie Lorenz, executive director of Independent Living Resource Center San Francisco, which serves 5,000 people in San Francisco.

The issue has motivated passengers with disabilities and activists to protest the grand opening of the new BART fleet tomorrow afternoon.

"Our message is simple: they need to remove the damn poles," Lorenz tells SF Weekly.

Lorenz, who is blind, says she got a call from one of BART's managers today who asked her to cancel the protest. But Lorenz says her community isn't backing down from their request. "They're trying to give us this song and dance that they're getting so much flak from the bike community because they don't accommodate bikes to which I say: this is a Civil Rights issue," Lorenz says.

"[The BART manager] straight up said 'yes this is going to cause more problems for people who board trains with mobility problems and strollers, but how much sacrifice for the few do we make for the ability of many to stand -- and stand safely?'"

BART Spokeswoman Alicia Trost says that BART has tweaked its pole design after hearing various complaints from passengers. While they have no plans to ditch the handhold poles, the transit agency has moved it several inches away from the wheelchair area, increasing the width of the path to 49 inches.
In addition, BART has also raised the point where the three tripod branches meet the pole by 3 to 4 inches to eliminate "pinch points" for wheelchair users.

"We also plan to actively remind customers to step aside to make room for wheelchair users to more easily enter and exit the train, especially when conditions are crowded," BART states on its website.

But that's not really going to solve the accessibility issue for wheelchair users and passengers using scooters, Lorenz says. She points to Washington, D.C. which is currently being sued for the very same thing.

Tomorrow at 11 a.m., Lorenz and fellow activists plan to attend BART's grand opening of its new fleet at the Justin Herman Plaza. But they won't be there to celebrate.

"We know we have less political pull than the Bike Coalition, and it's playing out," Lorenz says. "Our folks have had a hard time accessing BART since they allowed bikes on trains at all times so this has culminated and everyone is ready to take it to the streets."

Tuesday, April 15, 2014

Malawian blind voters push for tactile ballots

From Voice of America:

— Malawians who are blind are pushing the Malawi Electoral Commission to make available tactile ballot guides (TBG) for them to cast their votes independently.  In previous elections, they have been relying on guides who do the marking for them. They argue that such an arrangement violates their right to choose because they were not sure if their guides had really marked on the candidate of their choice.

An advocacy group for the rights of people who are deaf and blind, the Visual Hearing Impairment Membership Association, said that tactile ballots will help ensure the full participation of the disabled in the elections.

“The issue is that these people seem not to be assisted in the past elections. Yes, there might have been some problems [on the part on the commission] in the past, but this time we are saying ‘no, no, no.'  These people by nature have a right to vote as human beings and children of this country,” said Hockings Munyenyembe,  program manager for the association.

Munyenyembe said people who are deaf and blind have long been cheated by the electoral procedure, which allows them to use guides during voting. He believes this is a violation of their right to privacy.

“In most cases it had been discovered that these people [guides] had the opportunity to manipulate the system because, yes, the blind person could choose the person by naming, but when it comes to physical ticking, the person guiding the deaf blind person had a chance to change the other side," explained Munyenyembe.

Research by the association in 2010 showed that Malawi had more than 6,000 people are visually and hearing impaired. However, Munyenyembe says the association boasts about 2,800 registered members. And about 300 of them are expected to cast their ballots.

Sangwani Mwafulirwa, spokesperson for the Malawi Electoral Commission, told VOA that although the electoral law allows a visually impaired person to bring someone from home to assist in voting, the commission will make sure that this time around they vote independently.

“As the Malawi Electoral Commission, we have made it clear that we are going to provide tactile ballots in each and every center, so that if someone comes and needs to use a tactile ballot, they can use it,” said Mwafulirwa.

But Munyenyembe says with few weeks remaining to the election, they are worried about the slow pace the commission is taking to produce the tactile ballot. He says the association would need the sample ballots to pre-test them as well as to educate qualified voters on their use.

The Federation of Disability Organizations in Malawi, or FEDOMA, said it is seeking legal redress that would compel the commission to meet the demands of the people with disabilities for the elections.

Action Amos is executive director of the organization. He told a news conference last week in Blantyre that, among other things, the commission has failed to come up with an action plan and budget allocation for issues of accessibility for people with different disabilities.

“As an organization which represents persons with disabilities, we think that we need legal redress so that these people with disabilities are also able to cast their votes,” said Amos.

Mwafulirwa told a local radio, Capital FM, that the commission is making efforts to address all concerns raised by FEDOMA. But he said the commission cannot stop anybody from taking it to court.

New York magazine review says Ken Burns’s documentary 'The Address' a surprisingly non-Burnsian look at learning disabilities

From New York Magazine:

Ken Burns's The Address (PBS, 9 p.m. April 15, 2014) is just unusual enough that I wish it were better, but it's still so unusual — peculiar, even — that I'm recommending it. The advertising imagery suggests it's a film about the meaning of the Gettysburg Address, a 272-word passage in American politics that's arguably the piece of writing that most defines the U.S. Civil War. This is a subject tailor-made for Burns, who broke through to national prominence with his PBS miniseries The Civil War and went on to become public TV's virtual Smithsonian institution, curating our historical memory for us, with and without fiddle music. 
The Address, however, features none of the oft-parodied Burns storytelling techniques. It's really a documentary about the Greenwood School in Putney, Vermont, which houses 50 boys ages 11 to 17 who have various learning disabilities, including dyslexia, dysgraphia, executive function, and ADHD. With help from teachers, administrators, and advisors, the boys try to overcome their problems in order to memorize the Gettysburg Address. This is apparently a tradition at the school. The documentary genuflects in the direction of the "ticking clock" genre by telling us how many weeks are left until all the boys have to recite the Address, but its tone is unhurried to the point of being relaxed. Even though the story of the kids and the school is sometimes interrupted by factoids about President Lincoln's most famous bit of writing and the historical circumstances that birthed it — backed with music and voice-over narration performed by the students — the titular paragraph is just an excuse to tell us about the students' learning disabilities, what they mean in everyday terms, and what can be done to manage them.

Along the way we also get lots of fly-on-the-wall scenes of the teachers working with the kids and zeroing in on their own distinct difficulties. One boy has trouble keeping focused. Another stumbles over particular words or phrases. Another seems fixated on his version of order, is annoyed that the Gettysburg Address doesn't fit it, points to a particularly irksome phrase, and asks the teacher, "Why can't you just switch it around?" If you have a friend or family member with a disability, you already know a lot of what The Address has to say, but if you've been untouched by this particular set of challenges, this might be an eye-opening primer. A school therapist tells us that for many of these kids, memorizing and accurately reciting 272 words is "the ultimate, difficult thing." 
The Address is also Burns's loosest documentary in a long while. Eschewing the minimalistic formal control he usually brings to every topic — a toolkit of shots, cuts, and music cues as tight and regimented as Stanley Kubrick's or Wes Anderson's — he takes a 1960s observer approach, watching kids from far away with a zoom lens as they do their work. There are some wonderful caught moments, including a mini-montage of the kids snowboarding and sledding, and a cutaway from two kids studying the Address that reveals the underside of the desk, where one boy's sock feet are nervously swinging. The movie feels too long, padded even, but its relaxed vibe and non-cloying tone are a tonic. 

Monday, April 14, 2014

Bladerunner Oscar Pistorius tests new limits of disability, causes debate in South Africa about vulnerability of disabled people there

From in The Mail & Guardian South Africa:

Some say murder accused Oscar Pistorius is doing people with disabilities a disservice by blaming a heightened sense of vulnerability on his lack of lower legs. Others say Pistorius is right: disabled people are seen as soft targets, and serious debate is needed on whether they should get subsidised handguns.

The Paralympic athlete, on trial for the murder of his girlfriend, Reeva Steenkamp, started giving evidence this week in the Pretoria high court and everyone seems happy that disability came into the spotlight and hope it will change the lives of others, regardless of the outcome.

"In the most unlikely event that he is found guilty and must serve a sentence, then the discussion becomes what kind of facility he must go to, and whether it is friendly to the disabled," Olwethu Sipuka, the spokesperson for activist group Disabled People South Africa (DPSA), said.

As a successful Paralympian, Pistorius was a role model to other people with disabilities, but he became a universal superstar by breaking into the able-bodied Olympics. Organisations that had long struggled to convince the country that disability could be conquered suddenly found the going much easier and exploited the opportunity.

But it has become clear that opinions are sharply divided.

Medal vs pistol
"You can't hold up a gold medal in one hand and a pistol in another," said Ari Seirlis, chief executive of the lobby and advocacy group, QuadPara Association of South Africa. "We chose not to say a word, but then Oscar started the debate [and] said to the world 'I feel vulnerable because of my disability'.

"And we're saying he didn't earn the right to use that as an excuse; when he earned the gold, he took away his right to use that excuse."

In many ways, people with disabled are considered a homogeneous group. Had he met the income and asset thresholds, Pistorius, one of the fastest men on the planet, would have qualified for the same state disability grant as a quadriplegic with little or no mobility.

In the Paralympics, however, distinctions are drawn between different types of disability to make competition fairer and therein lies Seirlis's bugbear: in Paralympic terms, Pistorius is among the most abled of the disabled.

Seirlis's organisation was among those that made a poster child out of Pistorius and featured him on the front page of its magazine.

Tax exemptions
The day before he shot Reeva Steen­kamp, Seirlis said, Pistorius phoned him for help with the paperwork that would allow him to import a Maclaren sports car without paying the usual duty (which is waived for vehicles modified for use by disabled people). But now Seirlis uses phrases such as "scraping the bottom of the barrel" about Pistorius.

"We feel he has downgraded the view that people have of us in order to try and get himself some leeway with the judge and the assessors," Seirlis said.

But that is far from a universal view. The DPSA is gravely concerned about the risks faced by disabled people, Sipuka said. The fear of violent crime is rooted in reality, even for Pistorius.

"People are saying, 'Why would this disabled person have so many firearms?' – because this is a guy who understands the kind of society we find ourselves in, where people with disabilities are soft targets and are victimised.

"Many of our members with wheelchairs have guns. In the townships, they tell us that, when they come from getting their grants, they know they [the criminals] will attack."

Subsidised handguns
No organisation for people with disabilities wants to court controversy but, in private, some have floated the suggestion that handguns should be subsidised, tax-free, easily accessible, or all three, for people able to use them but limited in their mobility and ability.

But they will settle for some attention, by way of the Pistorius trial, to be paid to the disadvantages disabled people face in dealing with the legal system – the lack of sign-language interpreters to take statements and complaints from the deaf, the lack of Braille transcripts of court proceedings, the wheelchair-unfriendly nature of public buildings and the inaction over pleas for help, protection and support.

Others simply want those who work hard to attain equality, and are lionised when they achieve it, to stick to that narrative.

"The fact is that Oscar became famous because he is well built, because he is strong, for no other reason," Seirlis said. "When you become famous for that, you can't revert to vulnerability again when it suits you."

Friday, April 11, 2014

Acclaimed deaf actress Phyllis Frelich dies

From The Hollywood Reporter. Pictured is Frelich with Mare Winningham (top) and Ed Waterstreet in "Love Is Never Silent."

Phyllis Frelich, the deaf actress who won the best actress Tony Award in 1980 for her performance in the best play winner Children of a Lesser God, has died. She was 70.

Frelich's death was reported April 10 by the Deaf West Theatre group in North Hollywood.
"You paved so many roads for us, Phyllis," it said on its Facebook page. "A leading light of our community has been lost, and we mourn deeply."

No other details of her death were immediately available.

Marlee Matlin was the recipient of the best actress Oscar for playing Sarah Norman, the role that Frelich originated, in the 1986 Paramount Pictures film version. Matlin said on Twitter that she was "devastated … [Frelich] was a TRUE talent. RIP"

In the original Broadway play, a speech therapist (John Rubinstein) who works at a school for the deaf falls in love with a maid/student at the school, played by Frelich. It was written by Mark Medoff and first performed in a workshop production at New Mexico State University, with Frelich and her husband, Robert Steinberg, starring. He survives her.

Frelich, born to deaf parents and the oldest of nine deaf children in her family, earned an Emmy nomination for her supporting role in the 1985 Hallmark Hall of Fame miniseries Love Is Never Silent and had a regular role as a deaf nun on the NBC soap opera Santa Barbara.

She also appeared on such TV series as Barney Miller, Gimme a Break!, Spenser: For Hire, Hunter, L.A. Law, Pacific Blue, ER, Diagnosis Murder and, most recently, in a 2011 episode of CSI: Crime Scene Investigation as the mother of Gil Grissom (William Petersen).

A native of Devils Lake, N.D., Frelich attended the North Dakota School for the Deaf and then Gallaudet University in Washington.

She performed the American Sign Language interpretation of Jewel's rendition of the national anthem at the Super Bowl in 1998.

Monday, April 7, 2014

Inaugural Disability Film Challenge June 20-22 seeks to empower filmmakers

From the Disability Film Challenge: (You can find them on Facebook here. Video about the project here.)
The inaugural Disability Film Challenge will be a weekend short film challenge will that will take place on June 20th - 22nd, 2014.  The Disability Film Challenge's purpose is to motivate disabled and non-disabled filmmakers to be proactive in the film industry and to supply them with a means of exposure for themselves and their projects.   

It was started by Nic Novicki, a little person actor and producer.  Even with a successful acting career in projects like "Boardwalk Empire" and "Drop Dead Diva," Novicki realized Hollywood doesn't usually like to think outside the box, so he decided to create the roles he wanted to play for himself and began producing his own projects.  

He created The Disability Film Challenge to empower others in similar situations as well as to showcase stories about disability that don't always get told in the mainstream media.  

Entrants will have 48 hours to make a three to five minute film on the topic of disability.  On top of thematic and story rules, entries must include elements that at the very least, acknowledge disability to create awareness of these unique stories that are not being told.     

The winning films will screen at the TCL Chinese Theaters in Hollywood during the HollyShorts Film Festival this August.  

The Disability Film Challenge will also set up mentors for the winning films. Erin O'Marley, one of the producers of "New Girl" and "Curb Your Enthusiasm," will mentor the winner of the Best Film award. 

Max Borenstein, the writer of Legendary’s upcoming "Godzilla" and "Seventh Son," will mentor the winner of the Best Film Maker award. 

Casting director Pam Dixon who cast such films as "The Mask of Zorro," "City Slickers" and "Green Lantern," will be mentoring the winner of the Best Actor award. 

Saturday, April 5, 2014

Gallaudet University to commemorate 150th anniversary, opens new museum exhibition

From Gallaudet University:

WASHINGTON -- On April 8, 1864, when the United States was in the midst of Civil War, President Abraham Lincoln signed an Enabling Act, essentially a Congressional Charter, to allow a small school for deaf students in Northeast Washington, D.C., to confer college degrees. That school is now known as Gallaudet University and it remains as the only four-year liberal arts university in the world for deaf and hard of hearing students.

To commemorate the 150th Anniversary of the signing of its Charter, on Tuesday, April 8, 2014, Gallaudet will host a daylong Charter Day Festival which will include the grand opening of the Gallaudet University Museum's exhibition, "Gallaudet at 150 and Beyond."

Location for all events:
Gallaudet University
800 Florida Avenue, NE
Washington, DC 20002

Gallaudet University Museum
Location: Chapel Hall
On April 8, the Gallaudet University Museum will host its grand opening events in the recently renovated historic Chapel Hall on the Gallaudet Campus. The museum exhibition "Gallaudet at 150 and Beyond" begins in the mid-19th century with Thomas Hopkins Gallaudet and the founding of deaf education in America and guides visitors through the rich history of Gallaudet, highlighting the important people and significant events that had a role in the university's history.

Public Grand Opening: 1:30 to 3:00 p.m.
Ribbon cutting to be held on the steps of the Chapel followed by public entry.
Keynote speaker: Robin-Eve Jasper, president, NoMA (North of Massachusetts Avenue Business Improvement District)

Charter Day Festival Opening CeremonyTime: 9:00-10:30 a.m.
Location: Elstad Auditorium
Gallaudet's 150th Anniversary will kick off with an opening ceremony featuring the following events:
  • National Anthem performed in American Sign Language
  • Presentations by Gallaudet University President T. Alan Hurwitz and Provost Dr. Stephen Weiner
  • Reading of a statement from President Barack Obama
  • Reading of an official proclamation from District of Columbia Mayor Vincent Gray declaring April 8th as "Gallaudet University Day."
  • Skit re-enacting the actual Senate floor debate over the enabling act.
  • A poetic narrative performance in American Sign Language "The Gallaudet Sesquicentennial Story"
The opening ceremony will be followed by a group photo of all students, faculty, staff, alumni and guests on the University's mall.

Evening Lighting of Chapel Hall
Tim: 8:30-11:00 p.m.
Location: Chapel Hall

Built in 1870, Chapel Hall is listed on the National Registry of Historic Places and one of the finest examples of pre-Civil War collegiate architecture in the U.S. On the evening of April 8 the Chapel will be "lit up" with a multimedia show of colored lights and American Sign Language (ASL) signs. This offers a nice backdrop for live shots in 10:00 p.m. newscasts.

Below is a list of Gallaudet administrators and faculty who are available for interviews. Students are also available for interviews. The list is not exhaustive.
  • President T. Alan Hurwitz: Prior to becoming president of Gallaudet University in 2010, Hurwitz was president of the National Technical Institute for the Deaf (NTID) in Rochester, N.Y. He is past president of the National Association of the Deaf and the World Organization of Jewish Deaf. Hurwitz is currently chair of the North Eastern Athletic Conference (NEAC) Presidents' Council, the first deaf person to hold this position in NEAC history. He also serves on the board of directors for the D.C. Chamber of Commerce.
  • Fred Weiner: Assistant Vice President, Administration. Mr. Weiner is responsible for the university's local and Federal government relations, community relations and real estate development projects.
  • Brian Greenwald, Ph.D. - Professor, Department of History, Philosophy, Religion and Sociology. His areas of expertise are American deaf history and 19th Century U.S. social history. He is co-editor of A Fair Chance in the Race of Life: The Role of Gallaudet University in Deaf History and has also published chapters in The Deaf History Reader and Genetics, Disability, and Deafness.
  • Jane Norman, Ph.D. - Director Emerita, Gallaudet University Museum. Dr. Norman was a long-time faculty member at Gallaudet, formed the first Gallaudet University Theatre touring company, and re-designed the pilot, Images into the Emmy-award winning Deaf Mosaic, a television magazine format series that aired nationally for ten years. As producer and director, Dr. Norman created the concept of the Festival unit that became an integral part of the University's successful 1989 DEAFWAY and model for the following 2002 DEAFWAY. In 2002 she coordinated the DEAFWAY Film Festival. In 2010 she served as the producer and director of the 2010 competitive WORLDEAF Cinema Festival.
  • Michael Olson - Interim Director, Gallaudet Library Deaf Collections and Archives, which contains the most comprehensive collection of deaf-related materials in the world.

Saturday, March 29, 2014

Rest in peace, Gayle Hafner - thanks for many years of hard work strengthening disability rights in Maryland

From The Baltimore Sun:

Gayle Hafner, a senior staff attorney of the Maryland Disability Law Center and a co-founder of Medicaid Matters Maryland who was an outspoken advocate for those with disabilities, died March 22 of a heart attack during an operation at the University of Maryland St. Joseph Medical Center.

The longtime Towson resident was 60.

"A premier civil rights attorney, Ms. Hafner sounded a voice for children in foster care and people with disabilities," said Lauren Young, director of litigation for the Maryland Disability Law Center.

"She used her body for civil protest and her mind in countless legal challenges. She freed people from facilities so they could reclaim their lives in our communities," said Ms. Young.

"She was a bulldog. Gayle had incredible in-depth knowledge of Medicaid law, and she'd use that law to help people find a better life outside of a nursing home," said Laura Carr, chair of Medicaid Matters Maryland, which works to expand and improve Medicaid.

"She really helped people realize that there were other paths they could choose, and just because they suffered a stroke, they didn't have to spend the rest of their lives in a nursing home being cared for," said Ms. Carr. "She showed people that they only thing that held them back were their own fears."

Mary Gayle Hafner — she never used her first name — was born and raised in Hannibal, Mo., where she graduated in 1971 from Hannibal High School.

When she was born, doctors told her family that she would not live to adulthood. She was diagnosed with juvenile rheumatoid arthritis when she was 4.

"She spent virtually her entire life in a wheelchair," said her husband of 12 years, Crosby King, a legal assistant at the Maryland Disability Law Center. "She was proud of being disabled."

Ms. Hafner earned a bachelor's degree in 1975 in classical civilizations at the University of Illinois at Urbana-Champaign, where she returned to earn her law degree in 1979.

She was a VISTA volunteer at Sojourner Truth Women's Center, where she staffed a grass-roots domestic-violence services center, and was later a staff attorney for Southeast Missouri Legal Services. She was named staff attorney in 1981 of Legal Services of Northeast Missouri.

From 1985 to 1987, Ms. Hafner was the managing attorney for Legal Services of Eastern Oklahoma in Tulsa, where she managed a nine-county area with two offices while carrying a full general poverty law caseload in state and federal courts.

Ms. Hafner came to Baltimore in 1987 and was a staff attorney for the Legal Aid Bureau for a decade. She specialized in foster-care cases and negotiated extended reform of health care protections to children in kinship care, and represented hundreds of individual children in juvenile court.

She was an administrative law judge in the Office of Administrative Hearings in Hunt Valley from 1997 to 1998, when she went to work at the Open Society Institute. There, she developed the Kinship Power Team, a mentoring project for kinship caregivers of foster children with disabilities.

In 1996, Ms. Hafner and plaintiffs Dale R. Reid, a lawyer, and Jacqueline Spencer, who was probating a will, all of whom were disabled, filed suit in federal court with help from the Public Justice Center to make Baltimore's two Circuit Court buildings fully accessible to the disabled.

Two years later, U.S. District Judge Andre M. Davis ordered state officials to make the Clarence M. Mitchell Jr. Courthouse and Courthouse East on Calvert Street accessible to those who were disabled.

She was a staff attorney for the Legal Aid Bureau in Towson for a year before joining the Maryland Disability Law Center in 2001, where she remained until her death. She was an indefatigable voice in support of better care and access for those with disabilities living in Maryland.

"Gayle was extraordinary and one of a kind, and already we're missing her," said Virginia Knowlton, executive director of the Maryland Disability Law Center. "She was an incredible advocate for people with disabilities, and she had the unique ability to lead people with disabilities."

In 2003, she co-founded Medicaid Matters Maryland with Lorraine Sheehan.

Ms. Knowlton said Ms. Hafner was a familiar figure in the legislative halls of Annapolis.

"She was instrumental in getting state officials and policymakers to get them to understand the impact of their decisions. She was the real voice, and that voice will be missed," she said.

"She was incredibly multifaceted, dynamic, energetic and was everywhere. Gayle always saw the big picture and had the view of how policies connect," said Ms. Knowlton. "She lived and breathed this her entire life."

She was a member of Not Dead Yet, a disability advocacy group. She was the co-founder of the Maryland chapter of ADAPT, an advocacy group that addresses transportation issues for the disabled in the Baltimore area and led to the introduction in 2001 by the MTA of 80 "talking buses" that helped blind bus riders.

"ADAPT's slogan was, 'Free Our People,'" said Ms. Young. "She wanted people to get their freedom back. She was a powerful person who kept her eye on the prize and that the barriers would come down that kept the disabled from access."

"She energized us all to do better, expect better, and achieve more milestones," said Ms. Carr.
Ms. Hafner enjoyed attending Baltimore Symphony Orchestra concerts.

The Towson resident was a member of the Bolton Hill Synagogue, where services were held Tuesday.

In addition to her husband, Ms. Hafner is survived by her mother, Frances Hafner Roberts of Stroudsburg, Pa.; two brothers, James A. Hafner Jr. of Marathon, Fla., and Robert C. Hafner of Summit, Mo.; and a sister, Jennifer H. Poole of Stroudsburg, Pa.

Friday, March 28, 2014

Changing lives at a sports clinic for disabled vets

From Paul Wolfowitz in the Wall Street Journal:

At the end of this month, the 28th annual Disabled Veterans Winter Sports Clinic will take place in Snowmass, Colo. The clinic helps veterans suffering from a variety of challenges—from severe combat injuries to multiple sclerosis—rebuild their lives. 

That might sound like a big claim for a one-week winter event, but hundreds of past participants will tell you it's true. Chris Devlin-Young, who broke his back when a Coast Guard C-130 transport plane crashed in Alaska on a rescue operation and later attended the first clinic, went on to become a gold medalist in the 2002 Winter Paralympics.

The Disabled Veterans Winter Sports Clinic was started in 1987 by a small group of Veterans Administration staff in Grand Junction, Colo. They worked on their own time on a budget of $50,000—entirely from private contributions—with some 90 veterans assisted by roughly 50 volunteers. This year there will be some 570 volunteers assisting 400 veterans, including a 91-year-old veteran of the World War II Army Air Force. 

Since 2000, the Department of Veterans Affairs, a co-host of the clinic along with Disabled American Veterans, has provided some direct support. But 85% of the clinic's budget, $800,000 this year, still comes from private donations, not to mention the priceless volunteer support.

This clinic is an example of our country at its best, of that American genius for organizing on a volunteer basis to meet a societal need. It is also a demonstration of the often extraordinary ability possessed by people who are considered disabled—by traumatic brain injuries, spinal cord injuries, orthopedic amputations, visual impairments and neurological problems. Their performance frequently exceeds what many of us supposedly "able-bodied" people can do.

The volunteers are a stellar group. They include almost 200 certified ski instructors for the disabled—among them some of the world's best—and several current and former members of the U.S. Disabled Ski Team, as well as inventors of some of the prosthetic devices that are crucial for this unique sport. 

But it's the participants themselves who are the most amazing. Chris Devlin-Young says that he was mad at the world after becoming a paraplegic. Attending the first clinic only reluctantly, he was urged to try skiing—and became hooked after one run. "It gave me adrenaline and control," he says. "It gave me my life back." 

Another member of that original group is Urban Miyares, who boasts the world record for downhill blind skiing at 63 miles an hour and also skippered the first sailboat to complete the Transpacific Yacht Race with an all-disabled crew. He credits the clinic not only with his remarkable athletic achievements but with helping him become a successful entrepreneur.

Just 12 months after losing both hands to an enemy rocket-propelled grenade in Iraq in 2004, Marine Cpl. Eddie Wright was snowboarding at the clinic and stayed on active duty as a martial arts instructor, the first double amputee to serve on active duty, before retiring as a sergeant. 

When I first visited the clinic in 2004 as a Defense Department official, it sounded like a winter vacation for some men and women who certainly deserved one, but nothing more than that. I soon learned that the week is more like boot camp, and for many it is even more demanding. 

The veterans are pushed to do things they never thought they'd be able to do again, in some cases things they had never done at all. Imagine the thrill of a blind Vietnam veteran making his way down the ski slopes for the first time in his life, helped by the highly skilled instructor behind him. Or a newly injured triple amputee participating in adaptive sled hockey—a form of ice hockey.

Chris Lynch, a veteran of the famed 82nd Airborne Division, suffered a severe traumatic brain injury in a training accident 14 years ago. He has attended the clinic regularly since 2003. His mother, Cheryl, says, "No words can actually express how amazing this clinic really is." Cheryl started a traumatic brain injury support group that meets during the clinic. Veterans and their families discuss how they try to cope with the life-changing challenges they encounter.

Early during my first visit in 2004, one veteran approached me and with tears in his sightless eyes said: "I owe my life to this program." A nearly fatal automobile accident had left him, as he put it, "deaf, dumb, blind and quadriplegic. I was almost ready to give up on life." As the weight of that thought sank in, he continued: "This program gave me my life back. Now I have everything except my eyesight."

You can hear that story again and again from so many of the participants. "This clinic changed my life. It gave me back my will to live."

“Cybathlon” invites parathletes to compete in their prosthetics, exoskeletons

From Lily Hay Newman at Slate magazine:

The summer 2016 Olympics may be in Brazil, but I’m getting much more excited for a competition taking place that year in Switzerland.
Cybathlon 2016 is a championship for robot-assisted parathletes, and it sounds  awesome. If some part of your body is assisted or moved by external power—for example, a robotic prosthetic or an exoskeleton—you can compete. Unlike in the Olympics and the Paralympics, robotic devices and other futuristic mechanisms are basically required at Cybathlon, even—especially!—if they lend superhuman powers. See? Awesome.

Cybathlon was announced this week and will feature six competitions for athletes (who are known as "pilots"): a brain-computer interface race, a functional electrical stimulation bike race, a leg prosthetics race, a powered exoskeleton race, a powered wheelchair race, and a arm prosthetics race that tests dexterity for manual manipulation. It's quite the lineup. At the games, pilots will be eligible for medals in their events, of course, but device manufacturers will also be awarded for their contributions to development and research, as exemplified by the way the pilots perform with the devices.

Like with any sport, the events are designed to be challenging and exciting. The powered wheelchair race, for example, will happen on an obstacle course that takes competitors over different types of terrain and around different objects. The powered leg prosthetics race and powered exoskeleton race (for people with spinal cord injuries) will be on an obstacle course that will test how competitors handle slopes, uphills, straightaways, curves, and other scenarios. If certain pilots' devices operate more slowly in certain conditions, but allow them to catch up at other points, the competition could be fierce. Additionally, exoskeletons haven't had very wide public exposure, so it will be interesting to see the different ways the competitors can move. (My colleague Will Oremus wrote about the state of exoskeletons in 2013.)

The powered arm prosthetics competition will test the pilot’s dexterity. In the functional electrical stimulation bike race, devices will electrically stimulate people with spinal cord injuries to pedal bikes.

The most futuristic event will probably be the brain-computer interface race. In this competition, pilots who are totally paralyzed from the neck down will control a computer avatar that will either race on a horse or in a car against the other pilots. Honestly, if that isn't the future, what is?
The first Cybathlon will be in Zurich, Switzerland on Oct. 8, 2016. When you start to think about the potential for drama, human stories, and intense competition, the Cybathlon is totally compelling. It's not that human athletes aren't incredible—it's just that these pilots are actually superhuman.

Monday, March 24, 2014

African activists fight for rights of disabled people

From Deutsche Welle in Germany:

Rachel Karchaje navigates her wheelchair through the large laundromat like a pro, easing between whirring machines. She could just let herself be pushed, but she refuses to do so - out of principle. Kachaje is the Minister for Disability and Elderly Affairs in Malawi. In Berlin she's looking to see how Germany integrates its disabled community.

About 25 disabled men and women work here in the laundromat. They iron, starch and fold white tablecloths, towels and clothes. The firm, "Mosaik," which is committed to more integration, trains the employees and makes them fit for the labor market.

"That's exactly how it should be," Karchaje says. "When we are talking about issues of disability, it's not an issue of charity, it's an issue of human rights. All people should be thinking in line with human rights."
Phitalis Were Masakhwe nods in agreement. The activist from Kenya also uses a wheelchair. For nearly 20 years he's fought for the rights of the disabled. He says awareness is the most important aspect. In some countries in Africa, disability is still considered a punishment or curse.

"We still have issues of stigma, we still have people hiding disabled children," Masakhwe says. "People are still ashamed of disability. So there is still a lot of information to be given to demystify disability. We need to intensify that education, that awareness, so that people can come to terms with the fact that disability can be caused and that anybody can be struck by disability."

Kachaje und Masakhwe's Germany visit was arranged by the Friedrich Ebert Foundation. "Here in Germany there are many good approaches that the African countries can use as an example," says Merin Abbass, who works for the foundation's South Africa department.

Although there are no concrete numbers, Africa is home to an estimated 100 million people with disability. According to a 2011 report from the World Health Organization and the World Bank, these people have no access to schools, hospitals or social services. And they live in extreme poverty.

Condemned to poverty
"It's a vicious circle," says Looks Matoto. "When you have a disability, then you're destined to a life of poverty. And every time you try to shake this fate, you fail because you can't do it without outside help." Matoto works for Disabled People of South Africa, a non-government organization that is managed and led by people with disabilities. Matoto dreams of a South Africa in which everyone - with or without disability - has the same opportunity to find work.

Government assistance for people with disabilities is helpful, Matoto says. But this type of assistance alone can't be the only answer to poverty and joblessness.

"We want to be employed," Matoto says. "We do not want to do business where we fix old shoes for people - we want to own factories that manufacture shoes."

Matoto's home country of South Africa looks good on paper, when it comes to the rights of people with disabilities. There are numerous protective laws in place, and the constitution outlaws discrimination. And, just like Malawi and Kenya, South Africa signed the UN's .

Jobs mean independence
But the reality looks much different. Most disabled people can't afford a wheelchair, a pair of glasses or even a doctor's appointment. Getting around is difficult, especially in the countryside where the streets are in poor condition and there is no public transportation.

Tackling these barriers is a Herculean task. Even Minister Rachel Kachaje has no illusions. In her country, every other person is and there's the AIDS problem on top of that. The needs of disabled persons often take a backseat. But Kachaje's visit to Germany has given her courage.

"This has been a very good learning trip for me," Kachaje said. "Although we have got some workshops in Malawi, where disabled people can work - it is not to the standards I have seen here. If we can develop our structures, and make sure that the machinery, the equipment is there - I think we can create more jobs for disabled people in my country."

The minister knows what it means to fight resistance. She was three when she fell ill to polio. Since then, she's been paralyzed and confined to a wheelchair. From her job as a telephone operator in a company, she worked her way into the government. Her lasting message? Don't give up.

Thursday, March 20, 2014

Actress Lupita Nyong'o is now distributing her documentary about albinism in Kenya on DVD

From Third World Newsreel:

Third World Newsreel is proud distributor of In My Genes, a documentary film by Lupita Nyong'o, winner of the Oscar for Best Supporting Actress, the Essence Magazine Best Breakthrough Performance Award and the NAACP Image Award for Outstanding Supporting Actress in a Motion Picture for her performance in 12 Years a Slave
What is it like to be 'white' in a 'black' society? In My Genes shares the lives of 8 people with albinism in Kenya. It reveals the uplifting life story of Agnes, a woman with albinism of few means who heads a household of 7 children, her 17-year-old daughter expecting another. During the course of the documentary, Agnes discovers she has skin cancer and finds out the real reason why she lost both of her eyes. Yet Agnes keeps going, trusting in the work of her hands and the strength of her God. The threads of the woolen baskets she weaves blindly hold her family together as she tells us her story.

Interviews with seven other individuals inter-cut Agnes' narrative to share their unique experiences of living with albinism. They ponder on questions about the effects of their condition on aspects of their childhood, adolescence, sexuality, race, and dreams.

In My Genes presents an intimate introduction to albinism, and asks us to consider how it feels to be a member of one of the most hyper-visible and yet invisible groups of people in a predominantly black society. It is a film on disability, minority discrimination, identity, issues of representation, confidence and perception of the other.

"HIGHLY RECOMMENDED. A passionate rebuttal of prejudice and discrimination."
- LaRoi Lawton, Educational Media Reviews Online (EMRO)
"A candid exposé of what it means to live with albinism in Africa, the direct essence of our being."
- Isaac Mwaura, Albinism Society of Kenya
"With her documentary, Lupita Nyong'o tells us about ourselves. About our ability to stigmatize and exclude. Our inability to accept difference. Through CK, Mwaura, Alex and the others- all of whom have faced the challenge of being born with albinism- but mostly through Agnes, Lupita helps us to see life from the perspective of a segment of our society that is highly visible, yet totally invisible in all areas of life. It leaves us with a sense of shame that we can so sorely lack understanding, but it also leaves us with a sense of pride that despite all odds, one can, like Agnes, triumph. It is a must see for all who want to learn, to understand."
- Mumbi Ngugi, Albinism Foundation of East Africa
"...A salutary rebuke to prejudice, in all its forms... In My Genes therefore becomes an important, challenging and, above all, necessary film. Ms. Nyong'o deserves praise for the conversation her debut film invites us to have with ourselves after we have seen it and taken it all in. The dedication is to "different people." Lest we forget: we are all different but the same, as human beings."
- Mwalimu John Sibi-Okumu, Kenyan writer, actor and television presenter
Best Documentary, Five College Film Festival, Northampton, 2008
Souvenir Selection, Africala Film Festival, Mexico City, 2008

New York African Film Festival, 2009
Zanzibar International Film Festival, 2008
New Face of Africa Series, Salt Lake City Film Center, 2008
Re-Imagine Kenya, New York, 2008
Kenya International Film Festival, Nairobi, 2007

Lupita Nyong'o | 2009 | 78 min
2011 | 60 min | DVD with Digital File $225
K-12, Public Libraries & Special Groups $59.95

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Sunday, March 16, 2014

On 'DWTS,' amputee Amy Purdy is 'a dancer like anyone else'

From USA Today:

Hough flew to Sochi to get in some training time before the show starts, working around Purdy's snowboarding schedule. "I'm very proud of her," he says. "The odds have been stacked against us with lack of rehearsal time and travel," but "it's amazing to see Amy's determination and drive."

Conrad Green, Dancing's executive producer, says Purdy "might surprise everyone."

While Purdy may not be able to point her toes, she will be able to wear high heels like the other female dancers. "I have an adjustable high-heel foot," she explains, that can go up to 2.5 inches. "I wear it for everything."

Purdy has special "legs" for snowboarding and another set for running. And now she has special legs for dancing.

During her first day of rehearsal in Sochi, she realized that her regular walking legs were not working for dancing. "My calf muscles were wanting to expand, but they couldn't because they're in carbon fiber. So it was painful. I thought, 'This can't happen, or I'm not going to be able to do this.'"

Luckily, there was a prosthetic shop at the Sochi Paralympics. "They rounded out the insides of my legs for my calves to expand." She's been able to pop into the shop whenever she's felt any discomfort.

And now, she says, she's not in any pain. "I want to get that across. At this point, my legs fit well enough to do what I'm going to be doing. I'm snowboarding and dancing, and in between, I'm walking really far."

She plans to wear sparkly, spangly costumes along with the rest of the Dancing gang. "I know there will be a lot of focus on my legs. But my hope is that people see me as a dancer like anyone else who is going through this. My hope is that it's not all about my legs."

Purdy realizes that she's on the world stage right now. But "the media make it sound so tragic. Of course, I was 19 years old, and I suddenly lost my legs. It was extremely traumatic at the time, but I'm so beyond that. I've done so much with my life."

Winning is her real focus now. She knows that Olympic gold-medal ice dancers Charlie White and Meryl Davis seem to have the edge over everyone, but that's not going to stop her. "I think people are going to expect them to do really well because this is what they do — they dance." She adds, "I love my Team USA family, but I'm going to do my best to beat them."

Tuesday, March 11, 2014

Advertising Age story discusses how ad research overlooks disabled people

Full Disclosure: BA Haller is on the advisory board of DisABILITYIncites.

From Advertising Age:

Why aren't people with disabilities accurately represented in marketing? An ad-industry group says it's because they are underrepresented in research studies -- a phenomenon it's hoping to correct.

According to DisABILITYincites, the 54 million U.S. adults with disabilities and 23 million parents of children with disabilities are often overlooked in research because surveys, panels and other research tools aren't expressly designed to include them in samples.
The nonprofit was founded in 2011 by Tonya Deniz, a former researcher with Leo Burnett and MediaCom to shine light on how the group is ignored by marketers. Ms. Deniz, who is legally blind, says including the disabled in studies and tracking will give them a greater voice, more products aimed at their needs and, ultimately, more jobs. To further the cause, she recently enlisted as board president Don Gloeckler, a 33-year veteran of market research at P&G and currently exec VP-research and innovation of the Advertising Research Foundation.

Ms. Deniz sees people with disabilities today in a position as similar to that of Hispanics in the 1990s -- a huge and growing group that was largely passed over by marketers because they weren't being expressly included in market research.

That changed, she said, when Telemundo and Univision approached Nielsen with "a couple million dollars" and a request to replicate for the Hispanic population what it already did for the general population in tracking TV viewership. Nielsen added money of its own to create the National Hispanic Television Index, which helped measure the size and influence of Hispanics in the media market.

While people with disabilities may be randomly included in studies, she said research design doesn't expressly represent them. "They are consumers equal to non-disabled counterparts and should be included in co-creation" of products and marketing, she said. "You can't do that unless you measure the population."

Mr. Gloeckler said he hadn't considered the implications until Ms. Deniz approached him about joining. "It was one of those 'aha' moments," he said. "It's not a purposeful exclusion," he said. "I believe it's one of lack of understanding, lack of realization of the size and importance of this segment of the population."

While DisABILITYincites hopes to do its own research, and will do studies sponsored by marketers, any results would be available to the general public, because it's a 501(c)(3) organization. A bigger sign of success, Mr. Gloeckler said, will be when marketers and research firms expressly design studies that sample and analyze people with disabilities.

Some marketers now show people with disabilities in advertising -- such as a recent Swiffer ad showing Zack Rukavina, an amputee who's been featured in the Yahoo web series "Ultimate Surprises" and the TV show "Switched at Birth."

But many ads showing people with disabilities historically have shown signs of lacking input from people with disabilities, Ms. Deniz said. "They've gotten better," she said. "But a lot of the ads showed people with disabilities as what you call 'super crips.' You might as well slap a cape on them while they're in their wheelchairs. People with disabilities hate those ads. They don't want to be someone else's inspiration."