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.

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.

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.

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.

Reviews

"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
 

Awards

Best Documentary, Five College Film Festival, Northampton, 2008

Souvenir Selection, Africala Film Festival, Mexico City, 2008

Screenings

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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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."

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."

How Korean TV dramas portray people with disabilities

From K-Drama Stars:

K-drama plots have used disabilities such as vision and hearing impairment before. They often predict a tragic love story that could not be. Or the impairment causes a misunderstanding that spells tragedy. But lately k-dramas have started to include characters that are considered disabled in more varied ways.

Last year "Good Doctor" was a hit partly because it explored the interesting subject of Asperger's Syndrome. Some people diagnosed with Asperger's Syndrome, which is included in a spectrum of autism disorders, can have unusual abilities in certain areas without the social skills that make it easy to function in life. They may have exceptional musical or mathematical or conceptual abilities. But at the same time they may find it difficult to relate to others. They may not be able to read the facial expressions that signal emotion which most people learn as babies. Or they may behave childishly in other ways. That was the case with Joo Won's character in "Good Doctor (pictured)"

Despite his disability, his character managed to prove himself and the audience cheered him along.

While the plot  "Good Doctor" took some liberties while describing the disorder, that an actual doctor might disagree with, it did help many people learn more about Asperger's.

"God's Gift - 14 Days" has also taken on the subject of disability. Two characters that are pivotal to the plot have developmental disabilities. Ki Young Gi, played by Baro, is the disabled boy that Lee Bo Young's daughter plays with. When Lee Bo Young is allowed to go back in time, he may well help her prevent tragedy. That would be interesting because her character is very concerned with her daughter being smart and achieving in school.

Jo Seung Woo's character's brother is facing a death sentence for killing someone, which he probably did not do. But he was not able to defend himself. While the fact that this plot features a developmentally disabled man with a disabled son is misleading, this show does deliver two truths. First, the disabled are often unfairly blamed because of their inability. And second, they may need someone to stand up for their rights.

The upcoming drama "It's Okay, It's Love," takes on the subject of Tourette syndrome. A person with Tourette syndrome may have a nervous behavior they cannot control or may even blurt out words in inappropriate situations. Lee Kwang Soo announced this week that he was considering a role in this drama but did not say which role it was. Noh Hee Kyung, who wrote "That Winter The Wind Blows" and "Padam Padam," will write the romantic melodrama so it is bound to be both serious and heartbreaking. Jo In Sung and Gong Hyo Jin are rumored to be considering roles as a psychiatrist and a mystery writer. And EXO's D.O. has already signed on to the cast.

It will be interesting to see how these dramas and future dramas handle the subject of disabilities.

Double-amputee Amy Purdy ‘excited’ to compete on ‘Dancing With the Stars’

from ABC News:

Amy Purdy (pictured) is a sensation on the slopes, but the world-class paralympic snowboarder will trade in her snow boots for dancing shoes when she joins the new celebrity cast of the 18th season of “Dancing With the Stars” on ABC.

Purdy is teaming up with five-time “Dancing” champion Derek Hough.

When the two first met, Hough, 28, asked Purdy, 34, what she was most excited about for her upcoming turn on the show.

“I’m excited about the dancing, of course,” she said.

While there have been several athletes in the celebrity cast of the dance reality TV competition, Purdy is the first paralympian in its history.

When she was 19, Purdy lost both her lower legs to a near-fatal case of bacterial meningitis.

Speaking in the P&G’s Olympic primetime special “How to Raise an Olympian,” Sheri Purdy talked about her daughter’s illness, saying she was “struck down so quickly, in such an actual horrific way.”

Amy Purdy was in a coma for nearly three weeks, and was given a less than 2 percent chance to live.

“I remember thinking, this is so surreal. This is so crazy. I thought, ‘This is what it feels like to die,’” she said, speaking in the special.

Purdy pulled through, but a lack of circulation required that she have both legs amputated below the knees. She said her passion and drive for snowboarding never went away.

“Even after I lost both my legs, I never even questioned if I would do it again,” she said in the special, adding: “The journey has been so powerful and so amazing. I’m learning how strong I am, how resilient I am. I’m learning my weaknesses. And I’m taking this time to be the best I can be. Physically, mentally, spiritually.”

Driven by sheer passion, Amy Purdy was snowboarding again just seven months after her illness, and two years after she lost her legs, she was competing again. She has won three World Cup gold medals for adaptive snowboarding.

She also helped launch Adaptive Action Sports, an organization that helps disabled youth and wounded veterans become involved in action sports.

Purdy will take part in next week’s Paralympic Winter Games in Sochi, Russia. She’ll compete in the first ever para-snowboard event, and then return to vie for the mirror ball trophy on “Dancing With the Stars,” which debuts Monday, March 17, at 8 p.m. ET on ABC.

Disabled model Debbie Van Der Putten stars in new Dutch campaign

From The Huffington Post:

Model Debbie van der Putten is an amputee who lost her arm at 19 in a bus crash, but that isn't stopping her from conquering the modeling world.

The brunette beauty is the star of Dutch department store de Bijenkorf's latest campaign (pictured).

 It's worth noting that albeit van der Putten's notable achievement, another model is wearing that same dress on the website (whereas van der Putten's photo is in the de Bijenkorf app).

The fashion world has come a long way in recent years, opening the door, slowly but surely, to a more diverse array of models. Earlier this month, a model in a wheelchair rocked the runway for the first time at New York Fashion Week during the Carrie Hammer show.

As for racial diversity, Jezebel kept count of models of color strutting the runway during the Fall/Winter 2014 shows and found that 20 percent of models were not white. However small the number, Jezebel notes it is slightly larger than seasons past.

As far as van der Putten is concerned, the de Bijenkorf campaign may be a milestone, but not her sole accomplishment. According to her website, she was a contestant on "Britain's Missing Top Model" in 2008 and has been featured in Cosmogirl, Elle and Playboy.

Sochi isn't fully equipped to accommodate athletes with disabilities for Paralympics

From The AP. In the picture, a door frame raised from the floor lies across an entrance to wheelchair seating at the Bolshoy Ice Dome at the 2014 Winter Olympics.

SOCHI, Russia — After $51 billion, it should be easy to get around at the Olympics — for everyone.

Organizers have repeatedly touted accessibility for people with disabilities as one of the chief lasting benefits of hosting the Winter Games in Sochi. But with less than three weeks until the Paralympics, infrastructure around Olympic Park and its venues are not entirely barrier-free.

Wheelchair access ramps at Laura Cross-country Ski & Biathlon Center aren't easily visible, while stairs for walking access are steep and icy. Door frames raised from the floor are all over the venues, including doorways leading into lower seating areas and wheelchair seating at Bolshoy Ice Dome.

Wheelchair lifts at some of the hotels being used for the games only work on one side of the stairs — and instructions are provided only in English. One trailer with two restrooms for people with disabilities outside the Iceberg Skating Palace doubles as a storage closet, filled with janitorial supplies and a large trash can.

As the world saw when the Olympics opened Feb. 7, not everything is finished or polished — there are certainly hurdles for people with disabilities.

Nearly 1,500 athletes are coming to the Paralympics right after the Olympics. It's a much smaller scale than the games happening now, but in a country that's never hosted the Paralympics before. Despite preparations for years, issues remain for an infrastructure that won't be fully tested until athletes from the 43 countries and their supporters arrive. The Paralympics, starting March 7, include 72 events in fives sports over 10 days.

Ahead of that, people strolling around Olympic Park with wheelchairs, walking sticks, crutches or other aids have been difficult to find during the Sochi Games. Walkways are often blocked by cable protectors that create awkward bumps 5 or 6 inches off the ground. In many places, ramps are simple sheets of thin plywood, not always flush with the ground and almost always added on to the structures they connect rather than being built in during initial construction.

Arly Velasquez, an Alpine ski Paralympian for Mexico and analyst for Claro Sports, said buses are accessible to those in wheelchairs but drivers frequently don't know how to use the lifts, forcing him to either demonstrate himself or wait for another bus. And when he arrived at his hotel one night, the wheelchair lift leading to his room wasn't working, so he had to improvise by strapping himself to his chair with a belt, he said.

"I just put my computer on the top of the stairs," he said, "and I just climbed with the hands."
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'A STEP IN THE RIGHT DIRECTION'

Craig Spence, spokesman for the International Paralympics Committee, said the problems "are totally relevant but hopefully they'll be ironed out before the Paralympics start."

All venues for the games and infrastructure have been built in accordance with an IPC accessibility guide, he said. The issues themselves, Spence said, are a sign of how far Russia has come since winning the games seven years ago.

"That the lift is there in the first place ... is a step in the right direction," Spence said.

A smooth run is key to long-term plans for the games to encourage more access for people with disabilities throughout Russia. The last time the nation hosted the Olympics in 1980, it refused to stage the Paralympics, saying the country did not have people with disabilities.

Evgeniy Bukharov, head of the Paralympic Integration Department for the Sochi 2014 Organizing Committee, said he is confident the venues and the athletes' villages are fully accessible for athletes, spectators and families. Organizers plan to transition from the current games to the Paralympics by adding more seating capacity, transportation and pathways for people with disabilities, he says.

Organizers produced a 104-page handbook detailing the accessibility features throughout Olympic and Paralympic venues —including the biathlon center — plus hotels and key transit hubs. And staff is planned at each venue to handle complaints on access issues and find problems that need fixing. In some areas, like ski venues, more personnel are planned in places where accessible infrastructure wasn't practical, Bukharov said.

Organizers have been trying to work with developers, construction companies and fire officials, among others, to prioritize accessibility issues while meeting their needs. Raised door frames, for example, are required in some areas by fire officials so air can't get under the door, he said.

Bukharov said bus drivers for the games were hired relatively last-minute but will train more for the Paralympics on using lifts on buses.

"I hope that these games will be very convenient for people with disabilities, particularly for athletes, because everything was built to create a good atmosphere to support them to achieve that (high) level in competition," Bukharov said.

Russian officials have made an effort in recent years to make transport and public buildings accessible to people with disabilities. Some metro stations have lifts or ramps for people in wheelchairs but the application is scattered. Public buses are built low to the ground, but often have no lifts and are therefore not accessible to people with disabilities traveling without assistance.

As recently as September, a Human Rights Watch report said the more than 13 million people with disabilities in Russia have significant barriers in trying to go about daily life. As a result, they rarely leave home.

Disability rights researcher Andrea Mazzarino, who wrote the report, said people in Russia generally want to help those with disabilities but often suggest personal help rather than infrastructure changes that would allow people with impediments to get around on their own. "It sort of reflects this idea that it's not important and it's not expedient to allow people to use public services independently."
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THE BIGGEST TEST

The IPC did an audit of the Sochi venues in January, Spence says, and it plans to assess the situation on the ground at the venues when staff begin to arrive Friday, suggesting changes as needed. "We're not expecting too many surprises," he said.

But he acknowledged that the biggest test of any infrastructure comes when people using it arrive. And, he said, guests shouldn't have the same expectations outside of Olympic Park, despite the strides Russia has made.

"Outside the venues, there will be some issues," he said. "You can't change an entire city in the seven years that you go from winning the games to hosting the games."

Hundreds of buses with disability access used around Olympic venues, for example, are expected to be put to use around the country after the games end, Spence said.

But Mazzarino said Russians haven't seen improvements so far. "Residents outside the tourist zone have not benefited significantly," she said.

Officials for several national Paralympic organizations declined comment, saying they would get impressions of Sochi on site when they arrived. Tiina Kivisaari, secretary general of Finland's Paralympic Committee, said the country's staff and athletes didn't notice any serious problems during visits over the last year, but almost everything was under construction.

"From our Olympic team, we have heard that there's been some problems, e.g., with elevators, but we still trust and hope that villages, venues, etc., will be accessible when (the) Paralympic Games start," she said in an email.

Things visually look accessible in Sochi, but aren't as practical as they seem, Velasquez said. He said he's been able to make things work, navigating ramps that lead to dead ends or stairs and doing wheelies to get over cable protectors.

"I can do that, but not all of the wheelchair users can do it," Velasquez said. "I can do it because I am an athlete and also because this chair is very good, but not all of the people will have this kind of wheelchair."

Athletes, he said, want to be independent.

"More than anything, you're just looking to do things by yourself," Velasquez said. "You don't strive to be depending on someone else because it just takes time and just takes someone to be there."

Disability moving into the spotlight as companies embrace inclusion in their advertising, marketing

From Chicago Special Parent. In the picture, Grace Driscoll was part of a photo shoot for the Infantino and Step 2 campaign "Everybody Plays."

When retail giants Target and Nordstrom opted to include children with Down syndrome in their print advertising, marketing pros suggested the corporations were savvy, tapping into an audience of 53 million who collectively control $200 million in annual buying power.

Others suggested it was a risky move that ultimately benefited the corporate giants while enhancing the profile of children with disabilities.

Both corporations made the move in favor of inclusion in 2012 without calling attention to it. It was the special needs community that quickly sat up and took notice. Blogs lit up with the news that, after years of being excluded, the walls corporate America had built were finally-and notably-coming down.

Just as quickly, questions surfaced whether the practice could be seen as exploitative or as pandering to an audience advertisers had long ignored.

It was a theory that never gained traction.

Those who work to promote inclusion are pleased with what they have seen so far, and would like to see it expand to include other companies and even greater exposure.

Toys 'R' Us followed the lead of Target and Nordstrom, taking it a step farther when they produced a toy guide for differently abled kids in 2013 using the children as models that the toys were designed to help.
Late last year, Hollywood actress Tori Spelling-with her Little Maven clothing line-became the first high-profile boutique children's wear company to declare inclusion the standard.

Advocates say these corporate decisions are validation of just how important special needs families are in society today while providing another venue to mainstream children with special needs.

"We have noticed what we believe is becoming a trend toward inclusion, not only in advertising, but also in television on shows, like Glee which has a teen with Down syndrome in a recurring role, and in films," says Ann Garcia, family support coordinator at the metro Chicago-based National Association for Down Syndrome.

Lauren Potter plays Becky Jackson, the co-captain of the Cheerios on the popular program and is one of four individuals with Down syndrome who have been cast in roles on the show.

"It is gratifying that after more than 50 years of advocating for children with Down syndrome we are seeing our efforts continue to bear fruit," Garcia says. "These corporate entities no longer believe that having a child with Down syndrome in their advertising is risky. They ... are beginning to take notice of the many gifted individuals, who happen to have Down syndrome."

Increasingly, Garcia says organizations such as NADS receive calls from unexpected arenas-such as textbook publishers looking for models-and take note.

"This movement is gathering momentum because of people, such as Prince William and Kate Middleton, as well as others who are making conscious decisions that positively influence public thought," she says.

Although the royal couple typically shun gifts, they gratefully accepted a painting of Rupert the Flying Bear, painted by Tazia Fawley, an adult with Down syndrome in England, in honor of the birth of Prince George. The move was seen as significant in helping reverse the stigma that has historically followed those with the disability in that country.

As a professional working with the Down syndrome community and a parent with a teen daughter with the chromosomal abnormality, Linda Smarto sees the benefits of corporate inclusion from a host of vantage points.

In her role as program coordinator for NADS, Smarto's job is to champion Chicago's Down syndrome community.

"Every time we see an individual with Down syndrome featured alongside what are considered traditional models, it becomes easier for the next child and the child after that," she says. "Our kids are building on those successes and doing things today people would never have imagined even 10 or 20 years ago."

Inclusion has provided Smarto's daughter, Julia, with dreams that have expanded her horizons, giving her the courage to aspire to do anything other teens her age are doing.

"My daughter performs as part of a dance troupe with other girls who want to raise the bar, to show the community what teens with Down syndrome can do," she says. "... These girls... perform at venues, such as Great America and in retirement homes or at the mall, just like other girls their age."

That point of having the opportunity to be like any other child is one Smarto drives home whenever she talks about the importance of inclusion, of giving every child the opportunity to live up to their abilities and realize their dreams.

It is a dream parents are learning they can have as soon as they have a child who has been born with Down syndrome.

"Every time someone opens a magazine or sees a commercial that includes children from the Down syndrome community, it builds awareness," Smarto says. "That helps make it less scary for parents with newborns because they have seen the beautiful faces of people with disabilities who are out there leading wonderful and fulfilling lives, the kind of lives they dreamed of for their child before they knew they had Down syndrome."

U.S. Paralympic sled team special debuts on PBS Feb. 24

From NHL.com:

The 2014 U.S. Paralympic Sled Hockey Team will be the focus of a one-hour documentary entitled "Ice Warriors: USA Sled Hockey" that will debut Monday at 10 p.m. ET on PBS.

The 2014 Sochi Paralympics will begin March 7 at Shayba Arena in Sochi. The United States is coached by former University of Wisconsin coach Jeff Sauer, who is in his third season with the U.S. National Sled Hockey Team.

The PBS program follows the 17-member United States sled hockey team across North America as it prepares to defend the gold medal it won at the 2010 Vancouver Paralympics. The program will profile the accomplishments and determination of each individual on and off the ice.

The documentary also will be available online in its entirety beginning Feb. 25.

All U.S. games will be streamed live at TeamUSA.org. NBC and NBC Sports Network will also have Paralympics coverage. The U.S. begins play March 8 against Italy at 7:30 a.m. ET. The gold-medal game is scheduled March 15 at Noon ET.

The U.S. Paralympic Sled Hockey Team currently is training at Extreme Ice Center in Indian Trail, N.C., through Feb. 22. Final preparation for the Paralympics will take place in Colorado Springs, Colo., with Team USA holding practices Feb. 26-27 before leaving for Sochi on Feb. 28.

There are seven returning players from the 2010 U.S. squad that captured the gold medal in Vancouver, including goalie Steve Cash, who was named the top player at his position four years ago after not allowing a goal in five games. Additional returnees include defensemen Taylor Chace, Nikko Landeros and Andy Yohe, and forwards Taylor Lipsett, Adam Page, Josh Pauls and Greg Shaw. Cash, Chace, Lipsett and Yohe also earned bronze medals at the 2006 Turin Paralympics.

The youngest player on the roster is Brody Roybal, who turned 15 in May and will be making his U.S. National Team debut. Yohe, 35, is the oldest player and will serve as the team's captain. Four members of the team currently serve or have served in the U.S. military -- Jen Lee is on active duty with the Army, Rico Roman is an Army veteran and Paul Schaus and Josh Sweeney served in the Marine Corps.

New York Fashion Week features first-ever wheelchair-using model

From Women eNews:

NEW YORK --The fashion industry is coming under steady pressure to widen the spectrum of beauty ideals.

Ad campaigns have called out unrealistic beauty standards, major department stores are adding plus-size mannequins and New York's recent child model laws are designed to protect all models under the age of 18 from exploitation.

But there's still plenty of room for more inclusion, said Danielle Sheypuk, Ms. Wheelchair New York 2012.
"People with disabilities are an untapped consumer market in terms of fashion," said Sheypuk, a clinical psychologist in New York. "We read the magazines, shop in stores, but nothing is ever pitched to us."

On Feb. 6, the first day of New York Fashion Week, which ends Feb. 13, one designer in particular seemed to understand. Carrie Hammer decided to shake things up and feature Sheypuk (pictured) as the first person to "walk" the runway in a wheelchair.

"I made the decision to cast 'role models not runway models,'" Hammer said in an email interview. "It is so important to me that women have positive body image and are empowered in work and their life. My line makes dresses to fit women. We don't make dresses that women need to fit into."

Sheypuk, who has used a wheel chair since age 2, said she has a longstanding interest in designer clothing. But there was always something missing: enough role models. "People with disabilities need to see it. It's a confidence booster. It's like, 'if she's doing it, I can do it. Who cares about my wheelchair?'"

Hammer said during her show everyone had "chills" and "left very empowered."

Sheypuk said she was thrilled to be on the runway and felt natural and confident. "I was just another model in a show, and that's exactly what I wanted."

Sheypuk has more fashion-world engagements ahead. She is currently involved in the Raw Beauty Project, where high-profile photographers are shooting sexually alluring images of women with disabilities. The project can be seen online and will be exhibited in a Manhattan gallery in the spring.

Others Follow Trend
Other designers are also starting to reach out to people who love shopping and fashion, but feel excluded.

On Feb. 9 DKNY also used "real people" on the runway alongside professional models.

And in January, Diesel, the Italian ready-to-wear design company, rocked the industry with its "We Are Connected" campaign, featuring 26-year-old Jillian Mercado in one ad.

"Just because we have a disability doesn't mean we have to stay home and hide away from the world," said Mercado, executive editorial director of WeTheUrban Magazine, a fashion magazine based in New York.

Mercado, who was diagnosed with spastic muscular dystrophy at age 12, has also loved fashion since a young age. "I wanted to be in the fashion industry before even knowing what the fashion industry was," she said.

Mercado, who uses a wheelchair, attended the Fashion Institute of Technology in New York, earning a degree in fashion merchandising management. "It kinda blows my mind that when I first started [in the industry] I didn't have anyone to look up to and model after," she said.

'Blessing in Disguise'
Mercado said her time in the spotlight of the Diesel ad was a "blessing in disguise."

At first she was scared and "prepared for the worst" from people who "sit behind computers" and troll the Internet spraying abusive comments. However, after the ad ran she found an inspiring outpouring of support. "Now that I have this opportunity, that the spotlight is on me, I have the obligation to tell the world there are people like me," she said.

Mercado said the Diesel ad is just the beginning. "Look out," she said. "This not going not be five minutes of fame. The world is going to see more of me."

The push to diversify role models is showing up in a variety of media.

In September 2013, beer giant Guinness featured a group of men in wheelchairs in one of their commercials.

A couple of months later, for the United Nations' International Day of Persons with Disabilities, the advocacy group Pro Infirmis teamed up with Bahnhofstrasse (the upscale shopping street in Zurich, Switzerland) to display mannequins who were modeled on real-life people with disabilities. An emotional video of each person seeing him/herself as a mannequin in an actual store window quickly went viral.

"The fashion industry was a hard nut to crack . . . but I think there is progress," Sheypuk said, referring to the growing celebration of diverse ethnicities, sizes and shapes. "It's just time to include people with disabilities. It's 2014."

FCC draft does not mandate penalties for cable operators, broadcasters who don't comply with closed-captioning rules

From Broadcasting & Cable:

FCC chairman Tom Wheeler has teed up a vote on a three-part closed-captioning item that will require cable operators and broadcasters to make best efforts to improve their closed captions, but as currently constituted it will not propose fines or include specific standards, as some disability groups had sought, and will defer some tougher calls to the further notice.

The new rules go into effect Jan. 1, 2015.

A new draft is expected this week reflecting possible commissioner and general counsel office tweaks, but sources inside and outside the FCC were not looking for drastic changes.

According to sources familiar with the item, which is on the agenda for the FCC's Feb. 20 meeting, it is still a moving target—as one cable lobbyist put it—and could well change by a second draft, expected sometime next week. But an FCC source said the change would likely not make the requirements more stringent.