From the Norfolk Virginian-Pilot, an extended feature on people who are gathering in Virginia Beach for a regional conference of the Little People of America.

Conventions of the nonprofit organization are sweet relief for people with dwarfism and their families. They provide a world where being unable to reach the water fountain is no big deal, where top shelves go unused, where eye-to-eye conversations are more common than the neck-straining variety.

People like 17-year-old Jake Spruance (above left), a high school student and member of a wrestling team, has to put up with people staring at him, sneaking photos and videos of him, and even rubbing his head.

Members of the LPA are working for better public awareness of their lives, and some worry that prenatal testing will lead to more selective terminations of pregnancies in which dwarfism is diagnosed.

(Photo from the Virginian-Pilot: Jake Spruance with wrestling practice partner Taylor Whitt at Cox High School wrestling practice.)

From the Boston Globe, Colorado Springs Gazette and elsewhere:

Diana Chavez and Luis Herrera (at left) were among the protesters in Colorado Springs as members of the National Federation of the Blind picketed the opening of the film “Blindness” on Friday.

In addition to Colorado springs, there were news reports of protests in Boston, Des Moines; Denver;  Jacksonville, Florida; Rochester, Minnesota; Asheville, North Carolina; Dayton, Ohio; and elsewhere. Organizers said picketing was planned for 78 locations in 38 states.

Protesters handed out fliers and carried signs proclaiming the film a “travesty” and saying that “Stereotypes are the real evil.”

The film, which stars Julianne Moore, depicts a society  that is hit by an epidemic of blindness; chaos and depravity result. Protesters said the movie exacerbates stereotypes and stokes public fears.

“The difficulty of being blind comes from this low expectation of people who are blind,” said Mika Pyyhkala, who protested in Boston. “That causes more problems than any technical or direct blindness. This movie doesn’t portray the reality of what it’s like.”

See also:

Blind critics of film seem unenlightened — by Pete McMartin in the Vancouver Sun

(more…)

From the Des Moines Register:

Cy Arnett and three other men with intellectual disabilities rock out at a karaoke bar in Des Moines each week. Between performances, they live in a group home.

Bar owner Billy Bryant said at first some of the regulars at Billy Joe’s Pitcher Show didn’t understand the “Greased Lightning boys,” as they’re called. “To be honest, it was a little disturbing for them,” he said.

He moved the crew to Sundays, where there were fewer customers, and thought he’d only  let them stay until the big audiences came back for football season. But then … an excerpt:

… Bryant watched as the boys and their followers grew. He soon realized what the day means to them. They dress up, celebrate birthdays, and look forward to Sunday all week.

… He decided the boys could stay.

“I didn’t have the heart to turn them down,” he said. “There’s no place else for these kids to go.”

(Travis Leach, left, Cyron Arnett and Steven Jenkins rock out during karaoke at Billy Joe’s Pitcher Show in West Des Moines; Des Moines Register photo)

From the Pittsburgh Post-Gazette:

Henry deYoung, 23, was named Carnegie Mellon’s top undergraduate computer science student last spring, and is now enrolled in the school’s Ph.D. program. His younger brother Andrew, 21, also a student at Carnegie Mellon, is just as brilliant. They both have spinal muscular atrophy, a muscle-weakening disorder.

Technically, they’ve already outlived their expected lifespan, but they don’t dwell on it. They’re not expecting a cure. An excerpt:

“I think one’s circumstances affect one’s life, and I think it’s helpful if I and others remember that, and know that really, circumstances are just circumstances, not necessarily bad,” Andrew DeYoung wrote in an e-mail.

“In other words, we all need to remember that every person has value, not because of what we do, but just because we are. And it doesn’t matter whether one is president of the United States or is one of the dozens of sick children waiting right now at Children’s Hospital for a transplant — I think that if we all remembered that we all have value, life would be a bit more pleasant, and less goal-oriented.”

Advocacy groups stress joys and potential, but some doctors caution that the prospect can be daunting

From the Chicago Tribune:

Down syndrome advocacy groups have embarked upon “one of the most aggressive campaigns in decades to change the public perception” around the condition.

The effort has been given a boost by the candidacy of Sarah Palin, whose son Trig has Down syndrome, and is particularly timely now that Congress has approved the Prenatally and Postnally Diagnosed Conditions Awareness Act. The bill, passed last week, would provide up-to-date information for parents who receive a diagnosis of Down syndrome or other conditions.

Some doctors, including Dr. Jacques Abramowicz, co-director of fetal and neonatal medicine at Rush University Medical Center, caution against providing a picture of the disorder that is “too rosy.”

“Whenever something like this is in the media, there is the tendency to make it appear much more beautiful than it is in reality,” Abramowicz said.

Angie Picchi, 28, (above, with her mother Linda) is nicknamed the “Myth Buster” for her work meeting with groups of doctors and refuting stereotypes and low expectations.

See also: Parents of children with special needs see hope in Palin’s advocacy — Shreveport Times

The House has joined the Senate in passing a measure that disability rights advocates hope will fundamentally change the conversations that are taking place between pregnant American women and their doctors.

Passed on a voice vote on Thursday, the bill would provide for accurate, up-to-date information and support for parents who receive a diagnosis of Down syndrome or other disabilities such as spina bifida or cystic fibrosis either prenatally or up to a year after the birth of their child. President Bush is expected to sign it.

Passage of the measure marks the culmination of an unprecedented bipartisan effort that has joined supporters of abortion rights, led by co-sponsor Sen. Edward M. Kennedy (D-Mass.), with opponents of abortion, led by co-sponsor Sen. Sam Brownback, and disability rights advocacy groups. Kennedy is also a longtime advocate for people with disabilities.

While members of this loose coalition may have profound disagreements about what may be acceptable at the end of a pregnancy, they came together around another key question in prenatal care: What kind of information and support should be available to pregnant women if initial testing reveals the presence of a disability?

The question has become more urgent in recent years as more women are postponing childbearing, putting them at a greater risk of having pregnancies marked by genetic and other abnormalities, and as the offer of prenatal testing has become standard care.

(more…)

Writing in NPR’s ‘This I Believe’ section, Penn State University English Professor Gregg Rogers explores his reaction to his daughter’s prenatal diagnosis of Down syndrome. Rogers and his wife were overwhelmed by fear and anxiety at the thought of raising a child with a disability, he says, but were transformed when their daughter Genevieve burst into their lives.

I now believe Genevieve is here for everyone. I believe Genevieve is taking over the world, one heart at a time — beginning with mine. I believe that what was once our perceived damnation has now become our unexpected salvation.

… On my right wrist, I wear a simple silver chain with three little beads on it. I used to say the three beads signified the third chromosome that results in trisomy 21, Down syndrome. Now when I look at those beads, they simply remind me that I don’t ever know as much as I think I do, but I’m always capable of more than I think I am.

Rogers and his wife Lucy host a website for other families in their area who have children with Down syndrome.