Prima ballerina challenges Mexico's attitudes about disability

Rossana Peñaloza

The Washington Post profiled prima ballerina Rossana Peñaloza, who decided to spend six months in a wheelchair, and then created a performance from that experience to bring attention to Mexico's attitudes toward disabled people.

"For weeks now, Peñaloza has shocked and shamed Mexico, performing a one-woman show that challenges perceptions of the disabled in a country where people with disabilities frequently live cloistered lives because of the social stigma associated with their condition here," The Post writes. "Though Peñaloza is not disabled -- at age 45, her limbs can still send her shooting artfully across a stage -- she conceived a startling performance almost entirely confined to a wheelchair. A dance on wheels.

"For six months before her debut this spring, Peñaloza chose to live in a wheelchair. She tried to navigate Mexico City sidewalks that have no ramps or that have broken ramps or ramps so narrow her wheelchair didn't fit. She cringed as speeding drivers came breathtakingly close to running her down, even when she was in the crosswalk."

She says she's angry about how Mexican schools often segregate students with disabilities and she complains about the "paternalism" within Mexican society and families that she says often isolates young disabled people.

"My work is a grain of sand in an oyster so that all this will change," she said.

Peñaloza began thinking about the idea for the project several years ago when she gave dance lessons at a center for disabled people in a town south of Mexico City. And she said her childhood spent as a gymnast in Peru also informed the project because she competed in gymnastics tournaments with children from the local deaf school.

Bollywood film aims to bring awareness to dyslexia

Rahul Mangla, right, began to accept his dyslexia

after seeing the Bollywood film.

A recent Bollywood movie about a dreamy 8-year-old boy whose life is changed by a supportive teacher, "Taare Zameen Par" (Hindi for Stars on Earth), hopes to encourage a movement to raise public awareness about dyslexia in India, The Washington Post writes.

"A runaway hit, the film is about a bucktoothed, wide-eyed boy who is scolded and punished by teachers and parents for poor test scores, and repeatedly called an 'idiot' and 'duffer,'" according to The Post. "He retreats into a shell of silence and tears -- until a new, messiah-like arts teacher discovers the boy has dyslexia and encourages him to paint.

"The film has lifted the veil on an issue that has remained shrouded in private pain for many families in India. Parents, schools, activists and policymakers have held conferences and public meetings to talk openly about dyslexia since the film was released in December. Though a handful of groups have addressed the issue of dyslexia in India's big cities for more than a decade, public awareness and acceptance have been woefully low."

I wrote about the film in February when the World Bank praised the film for its positive representation.

Rolling Exhibition creator on NPR

Kevin Connolly

Photographer Kevin Connolly appeared on NPR's Talk of the Nation June 3, talking about his Rolling Exhibition, which is currently showing at the Kennedy Center in Washington, D.C.

Connolly has traveled the world on his skateboard, photographing the stares of others. Connolly, who was born without legs, has documented more than 32,000 photos of the stares he attracts.

Tribute Web site created to honor Harriet McBryde Johnson

Harriet McBryde Johnson

Writer and disability rights advocate Laura Hershey of Crip Commentary has created a tribute Web site about disability rights activist, author and attorney Harriet McBryde Johnson, who unexpectedly died June 3.

Johnson's hometown paper, The Post and Courier in Charleston, S.C. wrote a lengthy front page obituary on June 5.

Disability rights activists tell me they have been interviewed by the New York Times

Disability community saddened by devastating loss of disability rights activist, attorney Harriet McBryde Johnson

Harriet McBryde Johnson

The unexpected news shocked disability activists June 4 when they found out that South Carolina disability rights activist, attorney and author Harriet McBryde Johnson had died June 3.

Few obituaries have been published yet, except one in her hometown newspaper in Charleston, S.C. Johnson was in the disability rights spotlight for a number of years through essays against assisted suicide in the major newspapers, her 2005 memoir, Too Old to Die Young, her youth fiction book Accidents of Nature, her numerous years of protest against the Jerry Lewis Telethon and her legal and advocacy work on behalf of people with disabilities in South Carolina and around the country.

Here's what Ability Magazine wrote about her: "The embedded cultural response of pity prevails—a bias that Harriet McBryde Johnson has been fighting most of her life. As a lawyer she fights for her clients’ rights in her native state of South Carolina; as a national advocate for civil rights for people with disabilities, she fights to change embedded cultural biases. Through columns published in The New York Times Magazine, The Washington Post and Slate Magazine, Johnson has challenged the reasonable people in America to broaden their perspectives and shake loose the old stereotypes. In her new book, Too Late to Die Young: Nearly True Tales from a Life, she gives a rich and humorous picture of a full southern life. But interlaced is a nod to the insidious harm caused by the myth of the tragic life with disability. Born with a congenital neuromuscular disorder, she describes how she felt sentenced to death as a child by the images of pity on the Jerry Lewis telethon. As an adult she has seen this bias pervade other areas of American culture, such as the beliefs of Princeton’s controversial bioethicist Peter Singer, who has proposed that babies with disabilities should be killed at birth—and whose arguments she has tactfully disputed in a joint lecture at that campus."

I knew Harriet through her writings and the occasional emails we would exchange about media and disability topics. She always supported my work and was a disability activist who truly knew the significance of media images of disability and their impact in the lives of people with disabilities. The above picture made it onto the cover of the New York Times Magazine, and Harriet said it took much wrangling to get one that she felt truly reflected who she was, rather than one that would invoke pity.

She was a spirited and tireless crusader for disability rights, and she will be sorely missed.

Here's a listing of some of her numerous writings and a few of her interviews:

• "Unspeakable Conversations" in The New York Times Magazine, Feb. 16, 2003.
• "The Disability Gulag" in The New York Times Magazine Nov. 23, 2003. After its publication, the NYT reported: "A torrent of letters cheered Harriet McBryde Johnson's 'courageous' article, which inspired wide-ranging meditations on life and death."
• "The Way We Live Now: Stairway to Justice" in The New York Times, May 30, 2004.
• "Wheelchair Unbound" in The New York Times, April 23, 2006
• "Alas for Tiny Tim, He Became a Christmas Cliché" in The New York Times, Dec. 25, 2006.
• "Overlooked in the Shadows" in The Washington Post, March 25, 2005.
• "Not Dead at All, Why Congress was right to stick up for Terri Schiavo" in Slate, March 23, 2005.
• Her memoir Too Late to Die Young in 2005, which garnered many positive reviews including this one in The Washington Post: "Harriet McBryde Johnson's witty and highly unconventional memoir opens with a lyrical meditation on death and ends with a bold and unsentimental sermon on pleasure. Born with a congenital neuromuscular disease, Johnson has never been able to walk, dress, or bathe without assistance. With assistance, she passionately celebrates her life's richness and pleasures and pursues a formidable career as an attorney and activist. Whether rolling on the streets of Havana, on the floor of the Democratic National Convention in Chicago, or in an auditorium at Princeton debating philosopher Peter Singer, Harriet McBryde Johnson defies every preconception about people with disabilities, and shows how a life, be it long or short, is a treasure of infinite value."
• The youth fiction book Accidents of Nature in 2006, which follows 17-year-old Jean, who has cerebral palsy, to a summer camp for kids with disabilities where she questions her earlier years spent with little contact with other people with disabilities. I read the book last summer and found it gives fantastic insight into the lives of teens with disabilities, something rarely seen in literature. I hope it becomes a children's literature classic, especially among kids with disabilities, because it truly gives voice to their experience.
• "A Step-by-Step Guide to Organizing a Protest Against the Jerry Lewis Telethon" in Crip Commentary.
• "Legitimizing the Unthinkable: A Disability Rights Perspective on Nazi Medicine" was a lecture she gave at the U.S. National Holocaust Memorial Museum March 9, 2006. You can listen to the program here.
• An interview she gave to BBC's Ouch! May 18, 2008.
• CSPAN interviewed her about Too Late to Die Young on April 8, 2006.
• She was interviewed by NPR about the Terry Schiavo case April 6, 2005.
• On April 3, 2005, Stephen Drake from Not Dead Yet, and Harriet spoke about the life and legacy of Terri Schiavo on Greg Smith's Strength Coach radio show. You can listen to the show from its archive.
• She received the Jean Galloway Bissell Award on October 13, 2005 for her work as a woman lawyer. The award is named for Jean Galloway Bissell (1936-1990), a lawyer who blazed a trail for other South Carolina women lawyers in fields as diverse as the private practice of law, banking and the federal judiciary. Recipients of the award are recognized by the South Carolina Women Lawyers Association for their distinguished and noteworthy service to the public and to the legal profession; achievement of professional excellence; and participation in activities that have paved the way to success for women lawyers on the national, state or local level.
• She was named the New Mobility Person of the Year in 2004.

The University of Notre Dame has a biography of Harriet McBryde Johnson on its Web site.

UK Big Brother 9 rumored to include blind housemate

The reality show "Big Brother 9" will reportedly include its first blind housemate when its new season airs June 5.

According to InEntertainment.com, the show will make a few changes to accommodate the blind housemate. Host Davina McCall (pictured above) will escort him to the house instead of the usual routine of the housemates exiting a limo and walking up the red carpet to the house.

The Herts Advertiser reports that BB9 producers are putting a blind housemate into the house because "the house is 'blind friendly' and it is a chance to change peoples attitudes towards blindness."

The show's premise that 12 people share a house, which this season is in Borehamwood, Hertfordshire, UK, and have to compete in tasks each week to receive money for their shopping for the week ahead.

Graduates with disabilities shine in news coverage

Darius Weems, top picture, focus of the documentary "Darius goes West,"

receives his diploma from Clarke Central High School in Athens, Ga.

Ehrin McHenry, center, who has cerebral palsy, graduates from

St. Joseph's College in New York. Mimi Donaldson, bottom picture,

who has Down syndrome, with her mother and aunt at her

at Parkville High School graduation in Maryland.

It's that time of year and around the country graduates are leaving high school or college behind with diplomas in hand. Now that school accessibility is somewhat improved, it's nice to see the media attention being given to graduates with disabilities. Some of the stories may be a bit syrupy but most also mention some of strides being made to accommodate students with disabilities in modern high schools and universities.

Here's a roundup of a few stories about America's graduates with disabilities:

• Darius Weems, the star of the documentary "Darius Goes West," has Duchenne muscular dystrophy, and says in the Athens Banner Herald that he's glad to be alive and achieve something his brother, who also had Duchenne's, wasn't able to live to do. In March 2000, Mario Robinson died from Duchenne Muscular Dystrophy months before graduating from Clarke Central. "I think he'd be proud," Darius said, reflecting on how he thought his brother would feel seeing him graduate. "I think he'd thank God I made it." The "Darius Goes West" team has also created a curriculum guide called Know About It! to bring the film into classrooms.


• Ehrin McHenry graduated summa cum laude from St. Joseph's College, but described the extra work it took to coordinate classtimes so her mother could drive her to campus for all her classes, according to Newsday. McHenry, who has cerebral palsy and uses a wheelchair, said, "Every time I would register for classes, my mom would do it with me to make sure the times were good." She now has a degree in psychology and plans to attend graduate school in the fall at Adelphi University with the goal of becoming a school psychologist.


• Margoshia "Mimi" Donaldson, 19, who has Down syndrome, succeeded in inclusive classes at Parkville High School outside of Baltimore and is now a 2008 graduate planning to study at Towson University, The Baltimore Sun reports. "We have never treated her as if she had Down syndrome," said her mother, Margo Haynesworth. "She was always treated like any other child."


• Joshua M. Neace, who has cerebral palsy, was Silver Grove High School's valedictorian, and the first Northern Kentucky student ever to be selected a national Horatio Alger Scholar, according to the Community Press & Recorder. The cerebral palsy affects Neace's speech and processing skills and means it takes him longer to write notes or take tests.
  "I don't see myself as really any different than other people, except what I have," Neace said, referring to the cerebral palsy. He will attend Cumberland College in Kentucky and plans to become a doctor of pediatrics so he can work with people in a conflict zone.

Australian TV drama apologizes for insulting people with Down Syndrome

A long-running Australian TV medical drama, "All Saints," included a storyline last week "in which a woman pregnant from an incestuous relationship with her brother is told her child may have Down syndrome as a result," The Age reports. Channel 7, which produces the show, has formally apologized for the episode.

But Down Syndrome Australia, which sent a formal complaint to Seven, says it will wait until the show's newest episode on June 3 airs before it decides whether it will accept the network's apology.

Down Syndrome Australia says it's considering a boycott of the show's advertisers if an apology and correction are not aired on "All Saints" June 3.

"All Saints has stigmatised every person with Down syndrome and their families," Dr Peter Sloan of Down Syndrome Australia said in The Daily Telegraph. "We already know of one instance where a child has been victimised because of this episode."

"There is no scientific basis for All Saints' grossly offensive storyline," he said.

Answering Down Syndrome Australia's initial complaint, Channel Seven issued a statement saying: "All Saints values its audience and has the greatest respect for their commitment to the program. Without reservation, to any members of the audience who have found an element of a recent story offensive, Channel Seven apologises."

One vet's story of disabling PTSD

John Shaubach with his step-daughters

Smaller newspapers are covering the many issues facing disabled veterans as they profile people in their communities. The York (Penn.) Daily Record followed the journey of a local woman as she tried to help her brother, a veteran with disabling post-traumatic stress disorder (PTSD).

Melissa Gieniec, the local woman, traveled to Alaska to try to help her brother after a frantic phone call from her sister-in-law about his worsening PTSD. Her brother, John Shaubach, served 22 years in the Army as part of the 82nd Airborne Division. His leadership in combat in Iraq and Afghanistan earned him a pair of Bronze Stars and a Purple Heart.

Shaubach's story is just one of thousands because estimates from the Department of Veterans Affairs are that one in four veterans from the Iraq war will suffer some form of PTSD.

Two trips to VA-run PTSD treatment centers did not help Shaubach; in fact, one seemed to aggravated his symptoms because it was built next to a base with the war noises of live-fire and helicopter exercises.

Before leaving Iraq in April 2004, Shaubach said he watched soldiers die in numerous roadside bombings, sometimes for missions that had no military objective. He has a traumatic brain injury (TBI) and chronic body pain from the explosions.

Gieniec and Shaubach's wife took him to numerous doctors and VA clinics with little success.

"There was an incredible sense of hopelessness that this was never going to end," Gieniec said. "To hear it and see it firsthand was overwhelming."

Finally in early May, the VA declared Shaubach homebound and 100 percent disabled, and he is receiving some of the medical treatment he needs.

He's currently being treated for his PTSD at a VA clinic in South Dakota and Shaubach tells his wife that it feels like a good fit. The hospital backs up against a forest and he and several other veterans can spend hours walking in the quiet woods.

Refugees with disabilities benefit from clinic in Chicago

In 2007 the Sinai Health System in Chicago started a rehabilitation health clinic specifically for refugees with physical disabilities, ABC 7 in Chicago reports. The clinic is the first of its kind to provide services for refugees with physical disabilities who recently arrived in the United States.

The clinic's refugees are from Somalia, Rwanda, Myanmar and increasingly a number of Arabic-speaking countries, so the clinic adminstration says that figuring out how to communicate with people from so many different countries has been one of the biggest challenges.

"One of the problems is, I never know what language is coming through the door," said Dr. Michelle Gittler, the rehabilitation physician for immigrants and refugees with disabilities. "We see individuals who've had amputations, people who've been in war zones and had amputations.

"We've seen individuals with developmental disabilities. They've never had access to things we take for granted, like early intervention programs. I've seen people with polio. I've see people who had had fractures that have not healed. So, you name a disability," she said.

Huda Hassan, who is from Iraq, said she used the clinic because her 5-year-old daughter was injured in an explosion when she was about three months old, which left her with seizures.

"There was some explosion [that] happened. It was during the war of Iraq and [there were] some explosions happening around the home. At that moment, she was scared. After that, she got seizures," said Hassan. "After six months and they went to see doctor, then they gave her medicine for the seizures, and the medicine was very strong for her."

Gittler explains that "if you are fleeing a country with a disabled family member and you go to a camp where there aren't even services for people who are able-bodied, let alone some who's disabled, it's overwhelming."

In other resources, the U.S. Committee for Refugees and Immigrants provides a Resource Guide for Serving Refugees with Disabilities, which is a how-to guide for caseworkers and advocates who serve refugees with disabilities.

Beloved coach of Movin' Mavs at UTA mourned

North Texas fans of wheelchair basketball shed many tears last week with the death of beloved University of Texas at Arlington (UTA) wheelchair basketball coach, Jim Hayes.

A crowd of about 400 gathered at the UTA practice gym May 28 to say goodbyes to Hayes, coach of the university's Movin' Mavs wheelchair basketball team, and they were surrounded seven national championship banners signaling the longoing excellence of Hayes coaching.

The Fort Worth Star-Telegram said Hayes, 58, arrived at UTA as a student after being paralyzed in an accident on his 18th birthday. He spent his entire professional career there after graduation, building the wheelchair basketball team into one with an international reputation.

Hayes even got the President of the United States interested in wheelchair basketball. Hayes wanted to go to the White House in 1993 after the Movin' Mavs won a national championship. He said if other sports teams got to go, then a wheelchair basketball team should as well.

"He said it would be really neat if we could meet the president of the United States," said UTA former vice president Kent Gardner, who had been skeptical of Hayes' ability to persuade the President to talk wheelchair basketball. "About a week later, I started getting phone calls from Secret Service agents about background checks."

His memorial service featured a picture of Hayes meeting President Bill Clinton.

Hayes was known as a strong mentor to his team, using his forum as a coach to push the disabled students he met toward an independent life.

Paul Schulte, 29, Movin' Mavs All-American and 2002 team MVP, is now a married mechanical engineer who designs wheelchairs in Bradenton, Fla. He says, "Because of Coach and this university, I was able to pursue the degree of my choice. I think one of the victories he was most proud of was his own independence. He wanted that for each of us."

Even folks who know little about sports or wheelchair basketball knew about the great work of Jim Hayes. Thanks to my mother, who is one of those folks, for the tip about this story.

Prisoners train assistance dogs

Mitzie with inmate Sharon Richardson.

The New York Times profiled Puppies Behind Bars June 1, which is a program that has inmates at several prisons in New York, New Jersey and Connecticut to help train service dogs to assist disabled people, including veterans returning from Iraq and Afghanistan.

The article focused on the women at the Bedford Hills Correctional Facility who train the dogs. Several of women said the training allows them to feel useful as they train dogs to do things for disabled people like flipping a light switch, shutting a closet door or taking off socks.

“One of the things prison usually means is being useless, being defined by our worst acts,” said Judy, 58, a New York City mother who did not want to give her last name. “The program gives me a sense I can be useful, useful to people on the outside, to some person who can be helped by having the fruits of my work. There’s a sense that what we do has a life that’s positive in other people’s lives.”

The puppies, all Labradors and golden retrievers, arrive at the prison when they are eight weeks old. They live in metal crates within the women’s cells. The puppies remain inside the prison, working one inmate exclusively to learn the 82 commands they need to know before they are off to their next level of more tailored training.

Many of the dogs will eventually be given free of charge to veterans of the Iraq and Afghanistan wars who have become disabled due to war injuries.

U.S. Supreme Court to have first blind law clerk

Isaac Lidsky

Legal Times reports that on July 14 Isaac Lidsky, 29, will join the small number of clerks with disabilities who have served the U.S. Supreme Court, but he will be the first blind person.

Tony Mauro writes that "no blind person has taken on the reading-intensive job that entails digesting hundreds of petitions and writing memos and rough drafts of decisions."

He also may be one of the few clerks with an imdb.com profile, because Lidsky is also a former child actor on shows like "Saved by the Bell: The New Class."

Lidsky's father is a Miami attorney and he says "clerking at the Supreme Court has been a dream of his ever since his father, a Cuban-born lawyer in Florida, began telling him as a child about 'this thing called the Supreme Court.'"

Lidsky was diagnosed with retinitis pigmentosa, a degenerative eye disease that leads to blindness, about 15 years ago.

He attended Harvard College and then Harvard Law School, worked on the Harvard Law Review, did an appellate clerkship and then one with the Justice Department's Civil Division. Lidsky will clerk for retired Justice Sandra Day O'Connor.

Before he starts at the Supreme Court, he will introduce the foundation he created, Hope for Vision, at at gala June 18 in Washington, D.C. Its goal is to build awareness of blinding eye diseases and generate research into possible cures.

Video dictionary for sign language may be on its way

The AP says researchers at Boston University are working on "an interactive video project that would allow someone to demonstrate a sign in front of a camera, and have a computer program interpret and explain its meaning," basically a kind of video dictionary of American Sign Language (ASL).

According to The Associated Press, the researchers, who have a three-year, $900,000 grant from the National Science Foundation, want to put 3,000 ASL signs on video. "The goal is to use the technology to develop a multimedia ASL dictionary to help parents better communicate with deaf children, and to help sign language students."

A number of the researchers and doctoral students involved with the project know ASL, and they hope their video dictionary will assist anyone learning ASL, which is the fourth-most studied foreign language in U.S. colleges.

"I know from my own experience that it's really hard if you see a sign that you don't know, either in a class, in a video you've been assigned to watch, or even if you see it on the street, to figure out what it means," said linguistics professor Carol Neidle, one of the project's lead researchers along with BU's Stan Sclaroff and Vassilis Athitsos at the University of Texas-Arlington.

Native ASL speaker Elizabeth Cassidy, who is hearing but has three deaf siblings and learned to sign before she could speak, is one of four "linguistic consultants" for the project who signs for four cameras, three in front of her and one on her right. Two cameras shoot close-ups from different angles, and one takes a wider shot.

Even as a native ASL speaker, Cassidy says even she sees unfamiliar signs once in a while -- "a project like this is a long time coming."

Early onset Alzheimer's affecting older people with Down syndrome

Gerry Thomas with his sister, Beth.

The New York Times had an in-depth story illuminating what its calls "a cruel coincidence" in which older adults with Down syndrome appear to have a higher incidence of Alzheimer's disease.

"Research has shown that people with Down syndrome, a chromosomal abnormality, have a much higher incidence of Alzheimer’s disease at an early age," The New York Times reports. "Some studies have said that 60 to 75 percent of people over age 60 with Down syndrome will have Alzheimer’s, though Dr. Ira Lott, who is in charge of the Down syndrome program at the School of Medicine at the University of California, Irvine, said those studies have been limited in scope."

Gerry Thomas, 50, (pictured above) was diagnosed with early onset Alzheimer's two years ago. For the NYT interview, he struggled to answer a question about his favorite beer. “I think I’m losing it,” he said.

Advances in health care have meant the average life expectancy of someone with Down syndrome has risen to more than 50 years old, up from 25 in 1983. But some family members now have to learn to deal with the added disability of Alzheimer's affecting their loved one with Down syndrome.

Dr. Philip Levy, president of the Manhattan-based YAI/National Institute for People with Disabilities, said in the article that "Alzheimer’s theft of memory and communication skills is particularly devastating for people with Down syndrome, who have a lower-than-average I.Q. but can make friends easily."

“Their social skills are one of the things that makes them feel very important; they get a lot of positive attention for that,” Dr. Levy noted. “So, when that is taken away, it is very, very cruel.”