Press release from the National Down Syndrome Congress:

John Shaffner, chairman and CEO of the Academy of Television Arts & Sciences, has pledged that the Emmy-nominated song “Down Syndrome Girl” will not be aired on the primetime Emmy telecast or the broadcast of the Emmy’s Creative Arts awards.

Shaffner’s promise came in response to a letter of protest from the NDSC’s Self Advocate Council, which characterized the musical number as “hateful” and said its recognition by the Academy of Television Arts and Sciences carried the unjust message that “those of us who have Down syndrome are less valuable than others and deserve ridicule and abuse because of our disability.”

Shaffner thanked the group for sharing its concerns about the song. “The Television Academy is always sensitive to these types of issues and had already planned not to air this song,” Shaffner wrote.

The musical number, which appeared this spring on Fox Television’s “Family Guy,” describes a character with Down syndrome as a “little whore” who is “poorly grooming,” “as-of-Monday-shoelace-tying,” “just a little crooked walking” and “a special person’s wettest dream.” The lyrics also include a reference to the “shorty bus.”

It was nominated in the category “Outstanding Original Music and Lyrics” but lost out to Randy Newman’s music and lyrics for “When I’m Gone” from the finale of USA Network’s “Monk.”

Family Guy musical number was nominated in “Outstanding Original Music and Lyrics” category

Source: Letter from the National Down Syndrome Congress

Members of the Self Advocate Council of the National Down Syndrome Congress this week sent a letter protesting the Emmy award nomination given recently to “Down Syndrome Girl,” a musical number that appeared this spring on Fox Television’s “Family Guy.”

The number, which was honored in the category “Outstanding Original Music and Lyrics,” describes a character with Down syndrome as a “little whore” who is “poorly grooming,” “as-of-Monday-shoelace-tying,” “just a little crooked walking” and “a special person’s wettest dream.” The lyrics also include a reference to the “shorty bus.”

The Council, composed of people who have Down syndrome, characterized the song as “hateful” and said its recognition by the Academy of Television Arts and Sciences carries the unjust message that “those of us who have Down syndrome are less valuable than others and deserve ridicule and abuse because of our disability.”

The letter, which was directed to Academy chairman John Shaffner, asked that the song not be aired on the upcoming Aug. 29 Emmy Award broadcast. An excerpt:

When the organization you head honors this kind of prejudicial materials, particularly on an award show that is meant to celebrate the best of television programming, it means that those of us with developmental disabilities will have to fight even greater discrimination. What you promote impacts us very personally. We will be taunted more and treated less humanely, we will struggle to be included at school and in our communities. We will have to fight even harder for jobs.

… We implore you as the Chief Executive Officer of the Academy of Television Arts and Sciences, and someone who has brought satisfaction to millions through your exceptional production design talents, to promote positive portrayals of those of us with Down syndrome on television.

We beseech you and the Academy to balance this discriminatory song with the truth about us … We are real people with real feelings trying our best to live productive lives in our communities.

The lyrics of the musical number “Down Syndrome Girl” are here, and a video clip can be seen here. Earlier posts are here.

From the [UK] Telegraph, Toronto Star:

Canadian photographer Lisa Murphy has created what she calls a book of erotica for people with visual impairments. The book, called “Tactile Minds,” features photos of naked people that have been rendered in three-dimensional form. Murphy says she wants to appeal to  blind people who have been “left out” of a society saturated with sexual images.

Interviewed on BBC World Service, Geoffrey Long terms Murphy’s idea “absolute and total nonsense.” Long, who has been blind since birth, says visual representations are meaningless to people who do not see. An excerpt:

The triggers for arousal for blind people are so different from what sighted people have. The smell, a voice, warm, living, vibrant  skin to touch … [Would I respond to] some cold object that I ouldn’t even be able to identify anyway? No, absolutely not.

Writer was ‘inspired by the most horrible thought she ever had,’ says New York Magazine

Emmy-winning Rachel Axler made her off-Broadway debut this week with Smudge, a dark comedy about a couple who give birth to a child with one eye, missing limbs and multiple disabilities. In an interview with New York Magazine, Axler says she wrote the play after reading about disability rights advocate Harriet McBryde Johnson, a lawyer and wheelchair user who publicly debated with philosopher Peter Singer about his view that parents of disabled infants should have the legal right to kill their children at birth.

The play gets its name from the word the parents use to describe an ultrasound photograph of their daughter.

Excerpts from the reviews:

Joe Dziemianowicz in the New York Daily News gives the play three stars.

“If awards were given for creating procreation anxiety, Smudge would be a shoo-in …

“… The condition of the never-seen baby divides Nick and Colby. He hovers, consumed by ‘Cassio’ even at work as a census taker. ‘Living is binary,” he says. ‘Zero or one. Black or white. You’ve got two choices – alive or dead. This is my daughter. She’s the gray area. Which would you choose? Zero or one?’ …

“… Axler’s a sharp writer, but one wishes that she came up with a resolution as gutsy as the rest of the play. Instead, Smudge goes out with a whimper.”

Rachel Saltz in the New York Times, under the headline “And one-eyed offspring makes three“:

“Parenthood never looked weirder or more terrifying than it does in Smudge, a new play by Rachel Axler at the Julia Miles Theater. Here are some of the things that Colby, a new mother, calls the thing she gave birth to: it, creature, hot dog, freak, smudge, a bunch of entrails in casing …

“What gives the play its charge is how Ms. Axler taps into a primal fear – giving birth to a monster – and then calmly considers it from all angles. She has a lightness of touch, especially in the scenes with Colby, that makes the dark undertow all the more affecting.”

Elisabeth Vincentelli in the New York Post gives the play two and a half stars. The headline: “Baby, you’re the beast”

“When it comes to fully reaping what she sowed, Axler falls short, as if cowed by the topics she’s brought up. Mental illness, the expectations placed on mothers, the very issue of what makes someone human are no small topics, but here they’re brushed off almost as soon as they’re raised.

“Not for nothing is the baby named Cassandra. Although it alludes to Greek tragedy, Smudge contents itself with dramedy.”

Jennifer Farrar in the Canadian Press:

“Overcome with bitterness, sarcasm and cheesecake binges, Colby initially ignores the baby. She cuts the sleeves and legs off all the pink and white onesies, saying, ‘It doesn’t have limbs, it doesn’t need sleeves,’ and secretly uses the fabric to make a stuffed toy she calls ‘Mister Limbs.’ When she finally approaches the pram, she waves Mister Limbs and seemingly taunts Cassie with it, saying, ‘He has everything you don’t.’

” … Together, these parents need to discover whether they can accept the child they produced and learn to love her just the way she is. Ultimately, Smudge is also about the complicated nature of love, what it means to truly become a parent and the resilience of the human spirit.”

The 32-member marching band is the first all-blind group to participate in the Rose Parade

From the Los Angeles Times, Pasadena Star-News:

“We’re normal people living a normal life,” said 19-year-old Chris Harrington, who plays the tuba. “This just happens to be something we’re good at.”

Each white-uniformed student musician is accompanied by an assistant along the parade route. The red-coated assistants guide the musicians either by placing their hands on their shoulders or by using straps on the lower backs of the musicians’ uniforms.

Said one assistant: “They don’t want to be known as the blind band. They want to be the talent band.”

Photos of the band and a performance video are here.

(Los Angeles Times photo)

Charities raised objections when Rita Marcalo got a grant to explore her epilepsy on her own terms

From the Yorkshire [UK] Post, [UK] Times:

Performance artist Rita Marcalo said she felt “guilty that I had perhaps short-changed people” when she failed to induce a seizure on stage as she had hoped, but pleased that her efforts had provoked a public discussion of epilepsy, disability and art in Britain.

Marcalo’s work, called Involuntary Dances, had received a grant of  £14,000 from Arts Council England, and drew criticism from epilepsy charities who said it was dangerous and turned epilepsy into a “freak show.”

The artistic director of a dance company who has had epilepsy for years, Marcalo tried to induce a seizure by ceasing her medications, drinking wine, looking at strobe lights, eating dark chocolate, and depriving herself of sleep. Audience members were urged to document her seizure with their cellphones.

See also:

Epilepsy as live art isn’t controversial — By Allan Sutherland Friday on the [UK] Guardian Theatre Blog. An excerpt:

What Marcalo’s piece highlights is that adults with epilepsy own their own bodies and have a right to choose what to do with them. It illustrates that we are able to speak for ourselves, and don’t need charitable organisations to step in on our behalf. (It’s extraordinary that this is still an issue.)

She is also saying that there are worse things than having an epileptic fit. Several hundreds of thousands of us in this country live with epilepsy in one form or another, and our lives are not blighted … Marcalo’s performance will implicitly say: “It’s just a fit. Get over it.” She speaks for us all.

Dangerous myths about epilepsy — By Dr Sallie Baxendale, BBC. An excerpt:

While certain circumstances may conspire to make a seizure more likely, few reliably trigger seizures in the majority of people with epilepsy.

And there’s the rub.

Living with epilepsy is as much about living with the unpredictability of seizures and not knowing when and where they might occur, as coping with the seizures when they do happen.

In the end it may be Ms Marcalo’s failure to have a seizure on cue that teaches us more about the condition than a public seizure ever could.

Understanding epilepsy: One woman’s story — From the Times Herald-Record, Hudson Valley, NY

Writing in the Huffington Post, Lennard Davis takes Hollywood and Broadway to task for regularly casting actors without disabilities to portray characters with disabilities, as when Abigail Breslin (left) was selected to play Helen Keller in the upcoming revival of “The Miracle Worker.” An excerpt:

The media helps to shape and define how society at large thinks about disability. The more that television, films, theater, and other forms of performance reflect a world filled with diverse peoples and bodies live, the more egalitarian and fair our society will be.

The one way to achieve this goal is have not just characters with disabilities appear regularly in the media but to know that people with disabilities play them.

Lennard Davis is professor of English, disability studies, and medical education at the University of Illinois at Chicago.

Related posts here and here.