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.

From the New York Times:

Producers have cast a 10-year-old with a vision impairment as the understudy for the role of Helen Keller in the upcoming production of “The Miracle Worker” on Broadway. The production had drawn criticism last month for casting a non-disabled star actress, Abigail Breslin, in the role.

In response to advocates’ protests, lead producer David Richenthal launched a nationwide search to find a deaf or blind actress to work as Breslin’s understudy. With the help of the Alliance for Inclusion in the Arts, he found Kyra Ynez Siegel of Eugene, Ore., who lost most of the vision in her right eye after an accident.

Mr. Richenthal has also decided to offer audio and caption devices, known as D-Scriptive and I-Caption, free to blind, low-vision, deaf or hard-of-hearing audience members. The technology, which cost the production about $30,000, is in line with an effort by some Broadway producers to start offering such help to audience members.

See also:

Eugene girl wins Broadway understudy role — AP/Oregonian

(New York Times photo)

From Associated Press/USA Today and Reuters:

The United Nations has appointed musician Stevie Wonder as a United Nations Messenger of Peace. He will will focus on helping to improve life for the estimated 650 million people with disabilities — about 10% of the world’s population.

UN representatives said the singer-songwriter, who has won 25 Grammy awards, is being recognized for his philanthropic work with the U.S. President’s Committee on Employment of People with Disabilities, the Children’s Diabetes Foundation and Junior Blind of America.

Wonder was born in Saginaw, Michigan, in 1950 and became blind shortly after birth.

(Getty Images photo from USA Today)

UPDATE from AP:

Referring to the 650 million people with disabilities, Wonder said, “It is beyond my ability to fathom that 10 percent of the people of this world don’t matter to the other 90 percent of the people in the world.”

“I would hope that every single human being, and every single world leader, will commit themselves to making this world a better place and accessible for every single human being on this planet,” he said.

See also: Wonder promotes message of peace — CNN

Earlier post: UN says huge barriers remain for people with disabilities

From the Toledo Blade:

The Toledo Ballet has launched an adaptive ballet program to help children with Down syndrome enjoy the benefits of dance.

Ann Heckler (left, with student Caitlin McFerron) started the class after visiting an adaptive dance program started by the Boston Ballet and the Department of Physical Therapy at Children’s Hospital in Boston.

The Toledo program aims for improvement in the children’s social and physical skills and emotional well-being, but parents say it gives their children something else: the opportunity to enjoy themselves.  “She really glows when I say it’s time for dance,” one mom said of her daughter. “This is just for her, just for fun.”

Related posts here.

(Toledo Blade photo)