Michael Arrington, writing in TechCrunch.com via the Washington Post, reports that comedian Sarah Silverman has agreed to donate her time to a Los Angeles-area fundraiser to benefit people with Down syndrome.

Proceeds from the March 6 benefit in Culver City, called TwentyWonder, will go to the Down Syndrome Association of Los Angeles.

Silverman stirred controversy last week when she appeared before an international audience at the exclusive TED conference and cracked jokes referencing the current debate about the use of the word “retard.” Here’s how CNN described her routine:

In front of an audience of Nobel laureates, mathematicians, artists, scientists and inventors, Silverman did not hold back on her edgy brand of comedy.

After talking about the merits of adoption and the problem of overpopulation, Silverman joked on stage that she wants to adopt a “retarded” child with a terminal disease.

[Note: A writer on Salon.com said the term Silverman used was "terminally ill retard."]

That would earn her sympathy points, she said. But, because the child would die soon, she said she wouldn’t have to be stuck with the burden for too long.

In a video on the CNN site, Silverman explains her approach to comedy and says there is one category of humor that strikes her as offensive and unfair.

“I don’t really care for like fat jokes about women, specifically,” she said.

“Because I feel that we live in a society where fat men deserve love, and fat women do not deserve love — at least in white America. And so I feel like that’s an ugly thing, and it doesn’t make me laugh.”

In response to questions about Silverman’s upcoming appearance at TwentyWonder, DSALA board president Gina Vivona sent out the attached response. An excerpt:

It is DSALA’s position that we will treat people like we wish to be treated; with acceptance, respect, and understanding. Within those guiding principles, our goal is to extend the reach of our community by building relationships, providing education and increased awareness whenever possible.

There are many ways to be heard. One is to show people who don’t understand just how amazing our community members with Down syndrome are.

(Image from CNN video)

Landmark research offers recommendations for delivering the news, either prenatally or after baby’s birth

Parents’ preference: Don’t say ‘I’m sorry’

In a historic first, two leading professional journals this week published research advising doctors on how to deliver a diagnosis of Down syndrome, either prenatally or after a baby is born.

Advocates and physicians have been calling for guidance on delivering diagnoses ever since the American College of Obstetricians and Gynecologists (ACOG) recommended in 2007 that obstetricians offer prenatal screening and testing for Down syndrome to all pregnant women, regardless of age.

The 2007 ACOG recommendations were not accompanied by any assistance to doctors in delivering diagnoses, and many doctors have reported in survey research that they haven’t gotten professional training about individuals with intellectual disabilities, or about prenatal diagnosis or counseling expectant parents.

In publications released online, the journals Pediatrics and the American Journal of Medical Genetics provided guidelines prepared by a 29-member team of doctors, genetic counselors and other health care professionals from around the country. The recommendations were synthesized from a review of parent surveys and research over the past five decades, and incorporate the views of mothers who had received Down syndrome diagnoses. In many cases, these parents said they felt the information that was provided to them was inaccurate, incomplete, or delivered in a manner that was offensive and damaging.

Whether they had received the news prenatally or after the birth of a child, parents agreed that they preferred to get the diagnosis together, from a knowledgeable professional, and that they be provided with up-to-date information about Down syndrome, its causes, and the prospects for a child living with Down syndrome today.

Parents asked that physicians use sensitive and nonjudgmental language, and avoid sharing unsolicited personal opinions. They asked particularly that doctors avoid saying “I’m sorry,” or “Unfortunately, I have some bad news to share.”

(more…)

Rosemary Black writes in the New York Daily News that celebrity couple Katherine Heigl and Josh Kelley are among a growing number of parents who choose to adopt children with disabilities rather than wait for a healthy baby. Their 10-month-old daughter Naleigh was born in South Korea.

Cory Barron, foundation director at the St. Louis-based Children’s Hope International adoption agency, says that this year so far, 62 percent of the children placed by that agency have special needs, as compared to 13 percent in 2005. It’s due, he says, to the fact that the wait for healthy children grows ever longer.

… While it can seem like a wonderful idea to give a home to a special needs child, experts warn that it’s not a decision to make lightly. Some of the children’s medical issues, like  heart disease and cerebral palsy, can require lifelong care and drain a family’s financial and emotional resources.

Related stories here and here.

(AP photo/New York Daily News)

Appearing on The Ellen Degeneres Show, actress Katherine Heigl announced that she and husband Josh Kelley are adopting a baby girl with disabilities from Korea. With video.

“She has special needs. She’s a special needs baby, and because of that things all moved so much faster,” Heigl said. “You know, they wanted to get her to us as quickly as possible.”

(Photo from website of The Ellen Degeneres Show)

Over at the New York Times Motherlode blog, commenters are hotly debating the motives of a Texas woman who plans to adopt a six-year-old Chinese girl with scoliosis. The comments were prompted by the first in a series of guest posts by Jenny Staff Johnson about her adoption journey.

Johnson, who has two sons with her husband Mark, says she always wanted a daughter named Rosemary. She and her husband embarked upon a Chinese adoption, and found the wait was shorter for children who are older or have disabilities. Authorities sent her photos and information about dozens of children. Among them was an unsmiling girl who “appeared to have no physical or developmental problems other than a severe curvature of the spine.” An excerpt

We could handle this? Couldn’t we? Could we?

The stress was far worse on me than on my husband, who is a miracle of certainty in his own decisions. While I thought, read, fretted and cried, he quietly advocated for this to be our little girl. I took a hard look at our lives and wondered whether it might be better[to] minimize risk, to abandon the daughter-dream altogether and throw myself back into work as a writer. I could get a nanny, rent an office, and make a proper go of it as I hadn’t done in almost a decade. This fantasy held sway for about 24 hours, and Rosemary began to recede. But I just couldn’t make the call telling the adoption agency we wanted to return her file. Instead, at the end of the 30-day period and on election day 2008, we made a different call. Bring her home we would.

… Why have we chosen all this? Mostly because we want a little girl in our lives to complement our beautiful, rambunctious boys. And, I now realize, I must have inherited something of an adventure gene from my daughter’s namesake.

Johnson and her family have left for China to bring the girl home, and she will post updates as their journey continues.

See also: Gaithersburg woman helps kids with Down syndrome find homes — [MD] Gazette

John Loudon, wife adopted son with Down syndrome

From the St. Louis Post-Dispatch:

Republican Missouri state senator John Loudon and his wife are the adoptive parents of Sammy, a little boy with Down syndrome. The couple, who have deep roots in the anti-abortion movement, are also at the center of an ongoing national discussion about genetic testing, the acceptance of people with disabilities, and the type of information about Down syndrome that new or expecting parents are getting from their doctors.

Last year Loudon pushed through a state law, named for his son, that requires medical professionals to provide accurate information on the outcomes of people with Down syndrome and inform mothers with a Down diagnosis of adoption resources.

Some physicians and abortion rights activists worry that “Sammy’s law,” as well as the recently approved federal Kennedy-Brownback Prenatally and Postnatally Diagnosed Conditions Awareness Act, could interfere with the privacy of the doctor-patient relationship.

From the Washington Post:

Even as most prenatal diagnoses of Down syndrome lead to abortion, more families are seeking to adopt children with the condition. Almost 200 families are on waiting lists to adopt a child with Down syndrome in the United States, and others are seeking overseas adoptions. Many of those are families who already have a child with the condition; some are special education teachers or people motivated by religious belief.

Last month, President Bush signed into law a bill meant to help families who confront questions about Down syndrome or other disabilities. It promotes initiatives to give new or expectant parents up-to-date information about the conditions, as well as referrals to support services. It also authorizes the government to help create a national registry to connect birth parents with people who want to adopt a child with Down syndrome.