By Alan Sepinwall, [Newark] Star-Ledger

NBC’s new drama “Parenthood,” premiering Tuesday night, features a family whose son is diagnosed with Asperger’s syndrome. It’s among an increasing number of television shows that are trying to depict characters with the disorder, and is one of the first to acknowledge the diagnosis. An excerpt:

… the storyline — a personal one for one of the show’s creators — has the potential to be a breakthrough in how television depicts characters with a condition that’s increasing in prevalence, both nationwide and in New Jersey.

“I am always happy when I see characters on TV who are portrayed with Asperger’s, when it’s done correctly,” says Lori Shery, president and co-founder of ASPEN, a national Asperger support and education group based in Edison. “We need to change the cultural perception.”

See also:

Off-kilter characters: TV shows feature kids (and adults) with what looks like Asperger’s — Ellen Gray in the Philadelphia Daily News

From the [Howell, MI] Daily Press & Argus:

Nineteen-year-old Abby Loy, who has Down syndrome, is a high school graduate and community college student, and has lobbied Congress. She has been touring her region in recent weeks to give oral presentations about Down syndrome to government and education groups, saying the disorder has not stopped her from living a happy life.

Her presentation is meant to bring awareness and break stereotypes about people with Down syndrome.

University of Michigan professor Jenny Christner said a class of second-year medical students “fell in love with Abby,” and most called her presentation their favorite aspect of the class.

“She’s just adorable and really able to connect to people really well,” Christner said. “I thought it was a very powerful presentation to hear everything she has done.”

… What Abby Loy has been able to accomplish despite having a disability has not been easy. LuAnn Loy said she and her husband had to push for their daughter’s rights and and believe in her potential when no one else would.

LuAnn Loy said she refused to allow her daughter to be segregated from general-education classes and took on much of the responsibility in teaching her daughter to read.

(Photo of Abby Loy with niece Mya Loy from the [Howell, MI] Daily Press & Argus)

From the [Newark, NJ] Star-Ledger:

A haunted house at the Red Mill Museum in Clinton, NJ, has angered mental health advocates, who say  the “Asylum of Terror” theme reinforces negative stereotypes about mental illness.

Advertisements for the fictional show warn visitors that the wretched souls imprisoned in the asylum were tormented by “dementia, paranoia, violent sociopathic behaviors, physical abnormalities and deformities,” which led them to torture and murder all 200 staff members in 1942.

The National Alliance on Mental Illness issued a nationwide alert about the haunted house, saying, “It’s trick or treat time again. We don’t mind ghosts and goblins, but when ‘haunted house’ attractions become ‘insane asylums,’ featuring ‘mental patients’ as murderous ghouls, we protest.”

(Star-Ledger photo)

Writing in the Archives of Disease in Childhood (subscription required for full text), Dr. Brian Skotko reports that the number of babies born with Down syndrome has been steadily decreasing around the world as prenatal testing and selective termination have become more widespread.

Skotko reports that a trend toward later childbearing in the United States would have been expected to cause a 34 percent increase in the number of babies born with Down syndrome between 1989 and 2005 in the absence of prenatal testing. Instead, there were 15 percent fewer such babies born, a decrease of 49 percent between expected and observed rates.

With new and more sophisticated prenatal tests expected soon, Skotko called on the medical community to address the ethical questions raised by medical technologies that allow nations to decide what forms of human genetic variation are valued. He urged the medical community to:

– Develop guidelines for delivering a diagnosis of Down syndrome;

– Assemble current and accurate information on Down syndrome, in collaboration with parent support organizations, to be distributed to prospective parents;

– Offer comprehensive training to professionals on how to deliver a non-directive prenatal diagnosis; and

– Develop curriculum to give medical, nursing and genetic counseling students a richer understanding of Down syndrome.

An excerpt:

… In its support for Down syndrome prenatal screening, has the American College of Obstetrics and Gynecology endorsed a climate in which disability discrimination could more easily flourish?

… The age is swiftly coming where not all possible technologic advances may bring welcomed change. Parents who have children with Down syndrome have already found much richness in life with an extra chromosome. Now is the time for the rest of us to discuss the ethics of our genetic futures.

Dr. Brian Skotko is a clinical genetics fellow at Children’s Hospital Boston. ADC is the journal of the Royal College of Paediatrics and Child Health. Press release from Children’s Hospital Boston here.

Full article available for purchase here.

Josie Byzek, managing editor of New Mobility magazine, says President Obama “bombed” in his speech on the 19th anniversary of the Americans with Disabilities Act (ADA). Byzek says Obama fed into stereotypes and failed to recognize the civil rights struggles faced daily by people with disabilities. (Video of his remarks on CSPAN here.) An excerpt:

If this clip is indicative of Obama’s disability policies, then it’s clear Obama believes most of the hard work is already done (if it was ever that important to begin with), and mainly all we need now is better medical treatment, either through stem cell research or health care. Obama’s greatest praise is for the appeasers who never complain, and he gave just a passing pat on the back for the advocates who brought the ADA into being. Job done, he seems to say. No need for that type of unpleasantness any more.

But, oh yes, while we’re in a magnanimous mood, why don’t we beef up ADA enforcement a bit, says the tone of Obama’s speech. Too, let’s give lip service to the rights of Americans to live freely in the community. Maybe then they’ll stop handcuffing themselves to my house.

Once again I can only conclude that Obama has a crip problem.

Earlier posts here and here.

International singing sensation

From the [UK] Mirror, [UK] Times, CBS News and elsewhere:

By now, just about everybody has heard about Susan Boyle, the plain Scottish spinster whose extraordinary singing voice dumfounded the judges of a British talent show this week. Videos of her thrilling performance on “Britain’s Got Talent” have gotten more than 18 million views on Youtube, and she is already reportedly in talks with a record label.

But what many may not know is that Boyle, an unemployed church worker who cared for her elderly mother until her death two years ago, has a lifelong history of disability. Boyle says she has learning disabilities, the result of oxygen deprivation at birth, and was bullied in school because she was slow and had frizzy hair.

“The ones who made fun of me are now nice to me,” she told CBS News, “so I may have won them round.” She said she hopes her arresting debut on the TV talent show will remind people not to judge by appearances.

(Photo from the [UK] Times)

See also: It wasn’t singer Susan Boyle who was ugly on ‘Britain’s Got Talent’ so much as our reaction to her — Tanya Gold in the [UK] Guardian

UPDATE: From Deadine Scotland:

[Boyle] says she hopes the show will highlight her disability too.  She said, “I was slightly brain damaged at birth, and I want people like me to see that they shouldn’t let a disability get in the way. I want to raise awareness — I want to turn my disability into ability.”

Text of remarks

by Patricia E. Bauer

delivered at the annual conference of

the Down Syndrome Guild of Greater Kansas City

March 28, 2009

It’s more than a quarter of a century now since Margaret arrived and our family’s journey began, a journey that started in isolation, seemingly without history. As far as we knew then, we were the first couple in the history of the world whose utterly adorable baby had gotten a diagnosis of Down syndrome.

My husband and I knew nothing about disability then and knew pretty much no one who did, and somehow we instinctively thought without discussing it that we wanted to keep it that way. We didn’t know what we were up against, and we didn’t want to know, for fear that knowing might make us fail.

Later I learned that some doctors then were withholding routine medical treatment from infants like mine. In the month that Margaret was born, the great legal minds of the day were debating whether or not that was okay. Friends of mine at the newspaper were following this debate, I found out later, but couldn’t bring themselves to tell me.

The memories of those dark days fall away when I come into bright rooms like this one, full of hope and good cheer and the knowledge of allies made and battles won. I am humbled by your enthusiasm and encouraged by your shared sense of commitment. I salute your imagination, your willingness to learn and your generosity of spirit. Yes, indeed, we have come a long, long way in a very short time within the span of Margaret’s life, and of mine.

Of course, the tricky thing about being part of the disability community is that you don’t know you’re a member of the club until one astonishing day when it all becomes clear, and you realize that pretty much everybody ends up in the club sooner or later. But it took me a while to figure it out.

For the first decades of my life, I wasn’t consciously aware of what was going on. I didn’t know, for example, that the average lifespan of a person with Down syndrome in the year I was born was something like fifteen years, or that many – maybe most — people with Down syndrome in those days were sent off to live in institutions that were more like prisons.

One of those institutions was just a few miles from my home, a hulking stone pile behind huge metal gates. We kids held our breath whenever we rode past. (more…)