"Autism: The Musical" premieres on HBO March 25

By BA Haller

© Media dis&dat blog

No, this isn't some twisted Broadway show, where any topic becomes a musical. It's a thoroughly engaging documentary about a musical theater program in LA for kids with autism.

I saw it at the Margaret Mead Film Festival in NYC last November and found it gave fabulous insight into autism, which has become one of the most media-covered children's disabilities in recent years. The documentary doesn't just focus on the kids and their work in the theater program but explores their relationships with their parents and siblings and those parents and siblings relationships with them and each other. Several parents honestly divulge the complexities of nurturing a child with autism and the toll it takes on marriages and other relationships.

But even with its serious side, "Autism: The Musical" has a feeling of joy. The kids have their ups and downs, but they focus on their music or preparing a scene for the musical with their own brand of intensity. And of course, given the intrusion of some negative behaviors from the children because they have autism, the film has the underlying tension of any good narrative, because as a viewer, you can't wait to see how the musical turns out.

One particularly poignant scene prepared for the musical and written by several of the kids has them dramatizing the teasing and mistreatment they receive from non-disabled children. The scene smashes the myth in many people's minds that children with autism don't care about relationships with others.

That's what makes the film so groundbreaking -- kids with autism being portrayed just like other kids, rather than as having some medical diagnosis or being a savant. Henry chatters on about dinosaurs; Lexi sings beautifully and emotionally; Adam just wants to play his cello; Wyatt loves Harry Potter and telling a story, and Neal tries to communicate without getting frustrated. Just typical kids.

Directed by Tricia Regan, "Autism: The Musical" follows the efforts of Elaine Hall, founder of The Miracle Project, described as "an innovative and exciting musical theater program that brings together typically developing children and children with special needs in an atmosphere of creativity, acceptance and joy. It emphasizes creativity, self expression and social consciousness."

Hall is the mother of Neal, one of the five children featured. Her "never give up" spirit imbues the film with a kind of tenacity that gives one hope that many kids with autism will be OK because they have someone like Elaine Hall in their corner.

"Autism: The Musical" traveled the film festival circuit in 2007, gathering five Audience Awards at various festivals and was the official selection at another 10 film festivals internationally. Now it will be shown on HBO as part of its documentary series, and you can watch the film's trailer on the HBO web site. If you don't have HBO, the film will soon be available on DVD.

"Autism" The Musical" should not be missed!

"Doin' it: Sex, Disability and Videotape" screening in April

Or you can buy it on DVD from the Beyondmedia Education web site. "Doin' it" is the second video from the Empowered Fe Fes, a peer group of young women aged 16 to 24 with different disabilities. It is described as "an insightful investigation into the truths about sex and disability. In the video, the Fe Fes educate themselves about sex from many angles by talking with activists and scholars. The viewer tags along on a date between a woman with a disability and her able-bodied boyfriend, exploring relationship issues of dating with a disability over a candle-lit dinner."

The screening is in Chicago at the University of Illinois-Chicago as part of the “Race, Sex, Power: New Movements” program at the Black & Latina/o Sexualities Conference April 10-12.

The trailer for the video is on YouTube here.

The Empowered Fe Fes first video, "Beyond Disability: The Fe Fe Stories," won the Spirit Award and Achievement Award at the SUPERFEST International Disability Film Festival in 2005.

CNN interviews parents of Ashley X

CNN.com/health posted an email interview with the parents of Ashley X on March 12, which is the parents' first media interview. They are the Washington State couple who in 2006 received permission to surgically and hormonally stunt the growth of their 6-year-old disabled daughter so her body would remain small. (I wrote about the "Law & Order: SVU" episode that referenced it in January.)

The parents seem to be framing their perspective around what they call a new category of disability -- "pillow angels." These children are "permanently unabled," they say, and will remain at an infant level mentally and physically. They claim that "increased weight and height are the worst enemy for pillow angels."

Controversy has surrounded the parents' decision to stop their daughter's growth, and disability advocates explain "that it is never ethically acceptable to medically alter a human being for the benefit of caregivers. Such unnecessary medical procedures without therapeutic indications demean the essential humanity of the person undergoing them and of all people with similar disabilities."

Ashley's endocrinologist Dr. Daniel Gunther, who created the procedure to stunt Ashley's growth, committed suicide last fall. Ashley's parents discuss that event and the criticism from disability advocates in the interview. The parents say, "Ashley is in a vastly different category of disability than someone who is able to blog and write e-mails and can make decisions for themselves. A chasm separates the two, not a slippery slope like some fear or claim."

Hundreds of people with disabilities and disability organizations have come together to sign "A Statement of Solidarity for the Dignity of People With Disabilities," which is a response to Ashley's treatment (http://www.katrinadisability.info/ashley.html). Advocates say they sympathize with Ashley's parents but explain "the real issue is the lack of support, care, and help from our social, medical, and civil establishments for Ashley's parents and for all those who care for people with disabilities. "

Disability Arts and Culture Center makes Chicago TV news

In an excellent open-captioned report on March 10, ABC 7 news in Chicago did a report on the new arts and culture center, which is located at Access Living in Chicago.

The award-winning artist Riva Lehrer, who is involved with the disability arts movement, takes the reporter through the center. She explains: "Art about disability hasn't been taken seriously because the idea was that most of the art was being done in community settings and not as part of a professional art career. So what we've been looking for are professional artists with serious track records who are either disabled and are doing well-crafted, interesting, relevant work, in terms of contemporary art, or artists who are not disabled but who have done a lot of work about disability."

One of the co-creators of the center, David Mitchell, a highly regarded disability studies scholar, says: "We've rarely come to think of disabled people as a significant social minority, and it's really the creation of a history. That social minority that gives them status as kind of coherent collective group that can be followed from one part of history to another, so that act of making a history exhibit was fleshed out and given breath to the experience of disabled people as a collective group who shared experiences within the societies that they've been part of."

Karen Meyer of ABC 7 reports the story, and she specializes in reporting on disability issues for the station. Profoundly deaf, she has been a features reporter at ABC 7 since 1991. She also oversees DePaul University's Office of Students with Disabilities.

I see this as a great partnership that could work in many TV markets. Most TV stations are understaffed these days and reaching out to someone who can and wants to cover the disability community is an excellent idea.

New NY governor says discimination against him came because of disability more than race

In a NYT profile of the new governor of New York, who will start the job March 17, David Paterson, who is legally blind from an eye infection as a child, said: “Internally, I probably felt myself more discriminated against as a disabled person. And when I would experience discrimination from another African-American, I would go ballistic. I thought black people were supposed to understand.”

Paterson also said his disability taught him "to be a little more pragmatic about life.”

The NYT article really explores some of Paterson's history as a disabled person, explaining: "Because the public schools in New York City could not guarantee him an education without placing him in special education classes, his parents bought a house in Hempstead, on Long Island, where he became the first legally disabled person to attend the district’s public schools. He did well enough to be admitted to Columbia University — he graduated in 1977 with a degree in history — and Hofstra Law School."

The article says his visual impairment has helped him become a good listener. His aides report things to him in lengthy voice mail messages, and for speeches, he memorizes the text.

Paterson says sometimes people attribute more sight to his abilities than he actually has. "When I say I saw something, it’s more like I sensed it,” he said in a recent interview. “I think people’s perception of me sometimes is that I see more than I actually do.”

The NYT says as lieutenant governor, Paterson has focused on topics such as stem-cell research, domestic violence and better opportunities for women and minorities in business.

Maryland teen fights for rights of disabled athletes

Tatyana McFadden

The Baltimore Sun reported March 12 that Howard County teen, Tatyana McFadden, is advocating at the Maryland General Assembly for a bill that would allow disabled and non-disabled high school athletes to compete alongside each other.

"No student should have to fight to be accepted in high school," McFadden told a state Senate committee. The bill, she said in The Sun, "is making clear that all students should have the opportunity to be involved in school sports."

"The bill that would require schools to allow athletes with disabilities to play wheelchair basketball or tennis, to swim or to otherwise play sports among themselves or side-by-side with able-bodied students," according to The Sun.

Unfortunately, the Maryland Department of Education is against the bill, saying that because additional employees would be needed in each school system, it could cost as much as $2.8 million statewide.

McFadden, who was born with spina bifida, sued for the right to participate in track with her high school track team. She won two gold medals at a national Paralympic track meet in Greece in 2004.

She is off to college soon, but McFadden said she wants to make sure her younger sister, Hannah, who has a prosthetic leg, has the right to compete in high school.

In my mind, educating and preparing young people for their future -- and athletics is part of that -- is one of the most important duties of the state government through its education department. I realize education is chronically underfunded, but providing for a state's young people should be THE most important thing a state does. How does any state have a future if they don't have well-educated and athletically invigorated young citizens to take on a leadership role?

New York has the first blind governor

With the resignation of Eliot Spitzer a few hours ago, Lt. Gov. David Paterson, who is legally blind, becomes the governor of New York. He is also the first African American governor of New York.

Here's his bio from the NY state web site:

David A. Paterson was elected New York’s lieutenant governor on November 7, 2006.

Elected to represent Harlem in the New York State Senate in 1985, David Paterson has demanded and achieved change at every level, not simply by what he stands for but by who he is.

In 2002, David Paterson was elected minority leader of the New York State Senate, the first non-white legislative leader in New York’s history. In 2004 in Boston, he became the first visually impaired person to address a Democratic National Convention. And 2006 saw Mr. Paterson make history again by being elected New York’s first African-American lieutenant governor.

As New York State Senate minority leader, David Paterson led the charge on several crucial issues for New York’s future, proposing legislation for a $1 billion voter-approved stem cell research initiative, demanding a statewide alternative energy strategy, insisting on strong action to fight against domestic violence, and serving as the primary champion for minority- and women-owned businesses in New York. As a result, Governor Spitzer asked Mr. Paterson to continue to lead New York State on these issues as lieutenant governor.

Lt. Governor Paterson, who is legally blind, is also nationally recognized as a leading advocate for the visually and physically impaired. A graduate of Columbia University and Hofstra Law School, Mr. Paterson also currently serves as an adjunct professor at Columbia’s School for International and Public Affairs. David Paterson lives in Harlem with his wife, Michelle, and their two children, Ashley and Alex, and he is the son of Basil Paterson, the first non-white secretary of state of New York and the first African-American vice-chair of the national Democratic Party.

Carlana Stone gets into a good groove on "Oprah's Big Give"

Last week, I told you that Oprah Winfrey's new show, "Oprah's Big Give," included a contestant who uses a wheelchair, Carlana Stone. Stone got off to a rocky start in the first episode but vowed to learn from her mistakes and learn she did.

The March 9 episode had the contestants in Denver, where they were given $4800 and 48 hours and told to find someone in need to help with the funds. Stone chatted with a man in a parking lot and found out his stepdaughter had several disabilities and was non-verbal. She sprang into action, meeting the family and assessing their needs. She made an important decision not just to help Blair, the 16-year-old with a disability, but the entire family, including Blair's older brother who needed some resources to apply for college. Stone revealed that she has a nephew with disabilities like Blair's, and she really hustled to give the family even more than the $4800. In fact, she raised about $10,000, which allow Blair to get a medical assessment and an assitive technology device to help her communicate. The rest of the money will help her older brother apply for colleges.

Then Oprah threw a twist into the show and told all the contestants they had to find someone who could use the car that each contestant used in Denver. Stone knew exactly what to do because she had a car with hand controls. She called a rehab hospital in Denver and found someone newly disabled who didn't have the resources buy an adapted car. She found a Bosnian immigrant who recently became a paraplegic. He and his family were overjoyed, and Stone explained how important it was to have the independence that a car gives someone with paraplegia.

Stone was definitely on her game in this show, and her knowledge of disability issues helped her truly serve the two families she found to help. The contestant who was eliminated on that show gave his car to someone who wasn't needy, so it was pretty much a foregone conclusion he would be leaving.

"Oprah's Big Give" seems to be applying Oprah's golden touch to ABC, which led in Nielsen ratings on Sunday nights, according to The New York Times.

Controversial new British law challenged by deaf community

New fertility legislation in Britain will make it illegal to implant embryos with any known genetic abnormality in invitro fertilization (IVF) treatments if those without the defect are available, the BBC reported. But a deaf couple is challenging the law by requesting an embryo that will be deaf.
The BBC reports: "The couple have become icons in a deaf movement which sees this impairment not as a disability but as the key to a rich culture which has its own language, history and traditions: a world deaf parents would naturally want to share with any offspring. "

"Despite the fact that over time we have seen more and more rights for disabled people, they are now seeking to establish a legal principle that deaf people are inferior," says Tomato Lichy, who with his partner wants to have a deaf child through IVF.

Of course, many others oppose the couple's quest, claiming that "deliberately bringing a child with a disability into the world when one without could be born verges on the morally repugnant."

Cathy Heffernan explains in an opinion column in The Guardian that obstacles aren't caused by deafness, but by society's unwillingness to fully accommodate the deaf community. "Yes, I've had plenty of obstacles in life," she writes, "but I see these as the result of a society built for people who can hear. Anything for deaf people comes as an afterthought after years of lobbying. TV didn't incorporate subtitles until the 70s. Fire alarms could easily all have a flashing light, but you have to ask for one. Sign language, like French, could be taught in schools. When it became as freely used as spoken language on Martha's Vineyard in the 19th century, deafness wasn't considered a disability. "

Time to retire the R-word

A good opinion column in the Ventura County Star from a CEO of The Arc says the word "retarded" has become obsolete and should be relegated to history books, not used in modern language. I totally agree.

NPR: Disabilities spur music career of Melody Gardot

Melody Gardot

On March 8 NPR's Scott Simon interviewed singer and musician Melody Gardot, whose debut CD Worrisome Heart was recently released. Gardot explained that after she was hit by an SUV four years ago, she had short-term memory loss, chronic pain and acute sensitivity to light and sound.

A doctor suggested she do music therapy because music helps rebuild neural networks, which might help with her memory loss. She picked up a guitar, because although she already played piano, her injuries gave her pain if she sat up too long. Her move to becoming a performing jazz musician seems to surprise even her, but she says performing as a singer takes her away from her pain, memory loss, and light and sound sensitivities.

"To be honest with you, being on stage and performing is the 30, 40, 50 minutes of the most pleasurable experience that I have," Gardot told NPR. "Because it's during that time that I don't really feel any pain. I think it's transcendental, and I also think it's kind of like when you have a headache, and someone punches you in the stomach, you forget all about your head."

You can hear her music and Scott Simon's interview here.

Marlee Matlin clip promotes "Dancing with the Stars"

I don't know how I feel about this ABC promotion of "Dancing with the Stars" using Marlee's Matlin's deafness. It says "Oscar winner Marlee Matlin can't hear the music....[silence] [music swells] .... but can she feel the beat?" Then Matlin gives the international symbol that "she sizzles." I assume Matlin approved of this promotion, but I think ABC is taking a risk and possibly perpetuating stereotypes in using her deafness in a way that questions whether she will be able to dance. I know this is the usual way to promote the competitors but I think ABC needs to be careful. I also don't like the publicity photo of her used on the ABC web site (above). Everyone else has a fairly traditional head shot, but in hers, it is bizarre to see half her arm cropped off. ABC is not poor and I assume they had a better shot they could have used. Enough nitpicking. I am still glad she is on "Dancing with the Stars" and hope she wins!

Washington Post spotlights independent living

A March 8 Washington Post story profiles several people with intellectual disabilities who are now living on their own. The story explains the efforts of the revamped D.C. Department on Disability Services, which has moved more than 80 people into supervised apartments and small homes since July 1, 2007.

Happily, the story made the cover of the Post's B section and its Web site has several photos of the two men profiled in their new homes.

The government official behind this move to independent living is Judith Heumann, a longtime disability rights activist who served as Assistant Secretary for the Office of Special Education and Rehabilitative Services in the Department of Education during the Clinton Administration and is now director of the D.C. Department on Disability Services.

Heumann, who is a wheelchair user due to polio, explained the importance of independent living for people with disabilities: "I think one of the biggest problems that disabled people address is how they see themselves and how others see them -- see us. And when you live in a community in a more integrated setting like other people, you begin to be seen less as the oddity and more like a member of the community."

My only complaint with the Post article is the use of the term "mental disabilities" to refer to the two men. That terms incorrectly merges two disabilities, mental illness and intellectual disabilities. But other than that, it is nice to see the Post give prominent play to a crucial issue for many people with disabilities.

Fighting for "Friday Night Lights"

The New York Times TV blog, TV Decoder, reported March 7 that the future of the excellent NBC show "Friday Night Lights" is still up in the air. The show has a strong character with a disability, so it would be too bad if NBC drops it. The character, star quarterback Jason Street, became disabled in the pilot and his ongoing storyline gives some insight into someone coping with being newly disabled.

Here's the comment about FNL I posted on the NY Times blog:

"It would be a shame for network TV to lose FNL. It is well-written, brilliantly acted and digs into important issues about race, class and the American emphasis on sports and athletic bodies. I research media images of disability and it is one of the best recent TV shows to give a fairly accurate portrayal of a disabled character’s life. But even more importantly, the character’s storyline wasn’t dropped after he became disabled. It’s a brave thing when a sports-related show has a constant reminder of the life-changing dangers of that sport."

One positive about the show being on shaky ground is that ALL its full episodes are available online at NBC.com. So you can check out the excellent series with an authentic disability storyline.

Teal Sherer in Liberty Mutual TV ad

Actress Teal Sherer appeared in a national Liberty Mutual, which was broadcast on MSNBC March 6. A wheelchair user, Sherer was also set to appear as a regular cast member in the U.S. version of the BBC comedy, "I'm with Stupid." She appeared in the half hour pilot, which was not ordered for the 2007-08 TV season by NBC, Variety reported in January 2007.

According to Variety, "I'm with Stupid" "takes on the often-taboo topic of disability by centering on an unlucky guy who becomes friends with a man who uses a wheelchair -- and moves into his home for the disabled."

The irreverent Farrelly brothers, Peter and Bobby, who often use disabled actors in their films and touch on disability themes such as in "The Ringer," were behind the show's production, joining with writer Wil Calhoun ("Friends") and producer Ben Silverman ("Ugly Betty") to adapt the BBC show. NBC committed to the pilot in 2006 and it was shot, but not ordered. However, once a pilot is shot, another network could pick it up, so here's hoping.

BBC's Ouch! had an interview with Peter Keely, the 21-year-old creator of the British "I'm with Stupid," in 2005. Another interview with the British show's writer explained that the show only used disabled actors for the disabled characters: "Half the cast are registered disabled - in fact, everyone who plays a disabled character is a disabled actor - but again, the reason those people were offered those parts was because they were the best actors. It doesn't really matter whether they can supply their own wheelchairs..."

Daryl "Chill" Mitchell ("Ed" and "Veronica's Closet") appears in the U.S. pilot. A wheelchair user from a motorcycle accident in 2001, Mitchell added a wonderful dimension to "Ed" with the character he played, who just happened to be a wheelchair user like Mitchell.