By Amy Julia Becker in the Philadelphia Inquirer’s Sunday Currents section:

Becker says medicine’s “evidence-based standards of care” are skewed in favor of eliminating children with Down syndrome like her daughter Penny, with many women terminating pregnancies based on probabilities, fear and misinformation. Now expecting another child, Becker says she wishes obstetricians would update their ten-year-old brochures and

… include the fact that the life expectancy of people with Down syndrome has doubled in the past 25 years, or that the average IQ of a person with Down syndrome has doubled over the course of the 20th century, or that many physical “defects” can be corrected relatively easily because of advances in medical care. (Penny had a hole in her heart, for instance, that may well have killed her a few decades ago. Now, it didn’t even warrant an overnight stay in the hospital.)

(more…)

From columnist Beverly Beckham in the Boston Globe, high praise for two books:

“Gifts - Mothers Reflect on How Children with Down Syndrome Enrich Their Lives,” edited by Kathryn Soper, and

“Road Map to Holland - How I Found My Way Through My Son’s First Two Years With Down Syndrome,” by Jennifer Graf Groneberg.

Both women have sons with Down syndrome.

At a workshop at the recent convention of the National Down Syndrome Congress, a woman who had a prenatal diagnosis of Down syndrome said “Gifts” saved her daughter’s life. Until she read the book, she said, she and her husband were sorry for and frightened by people with disabilities.

“Gifts” took them beyond the stereotypes and showed them that “disabled” is a loaded and omissive word with all the bad left in and all the good left out.

“Road Map to Holland” does the same thing.

Two books of love stories. Two books that are already changing the way people think.

Writing in the Washington Post, novelist Ann Bauer (no relation) says she’s jealous of parents whose adult children have Down syndrome.

Bauer, whose son has autism, says family members of people with Down syndrome have “figured out a cohesive, workable system of support,” while the autism community is divided and disorganized.

She wishes the autism community could take a lesson in cooperation from families of people with Down syndrome, but fears that high rates of selective termination will ensure that “the power of their parent group is shrinking, as is the world’s mosaic of human form.”

Someone has to talk to those wise parents before they die out, or I fear our children with autism will continue to wander through a world where they never fit.

From the [London] Evening Standard:

Caroline Armstrong-Jones, the leading British event planner whose daughter India has Down syndrome, says in an interview that she is concerned about the selective termination of pregnancies in which Down syndrome is diagnosed.

Armstrong-Jones and her husband Peregrine are well-connected members of London society. They handled the arrangements for the wedding of David Beckham to Victoria Adams (Posh Spice) and of the Queen’s grandson Peter Phillips to Autumn Kelly.

“As a mother of a Down’s syndrome child, I know that they have a contribution to make and that they live entirely viable lives,” [Caroline Armstrong-Jones] says. “There is something horrific to me in the idea that they might all be weeded out or got rid of.

“I think, on a greater level, a part of me feels that, in 100 or 200 years’ time, what we’re doing now will be seen as a form of genocide, a terrible thing that we all thought was OK because it was legal and because the doctors and politicians said we could do it.

“There’s a feeling that perhaps it’s too expensive to have these very different people around, or perhaps even too frightening, and I think that’s a huge loss.

“Society is obsessed with perfection which, paradoxically, is a very flawed way of thinking. I know that I’m in the minority on this and I sometimes feel that I’m the madwoman and everyone else is sane. But for me there’s no grey area here; it’s a black and white issue.”

Peregrine Armstrong-Jones is the half brother of Lord Snowdon, the former Anthony Armstrong-Jones, the society photographer who was was once married to and ultimately divorced from the Queen’s sister Margaret.

Note: This story, from July 8, 2008, is not available on the newspaper’s website but can be accessed here.

From Newsday:

Valerie Karr, a Columbia University PhD candidate studying international perspectives on disability rights, raises an alarm about what she calls the “virtual extermination” of children with Down syndrome and the tendency of society to devalue those with disabilities.

She examines the influence of persisting negative views among physicians and society on the 92 per cent abortion rate of fetuses with Down syndrome, and says increased prenatal screening will mean that “the world will miss out on the opportunity to experience these wonderful and giving members of our society.’

Nor is this “profound and disturbing” question limited to Down syndrome, Karr writes. Recent research seems to indicate that autism could represent “the next wave in disability-related abortion.”

Such abortions raise painful questions normally relegated to the religious or philosophical spheres. Do we want only “perfect” children? Does society value “normal” people more than those with disabilities? Is the unalienable equality inherent in all humans a fraud?

… We have resolved in the courts, for the time being, the issue of abortion. It remains a woman’s choice. But that choice is demeaned if communities devalue the life of its disabled. The vast majority of these children are handicapped in the womb, condemned by their disability to disposable status despite the fact that children like Sully can live long, happy lives that enrich everyone they touch. Awareness of the equality of all children — including children with disabilities — is the first step to legitimizing a woman’s right to true choice and to the broader acceptance in society for the rights of persons with disabilities.

From the Scotsman:

Conservative Member of Parliament Nadine Dorries is pushing for a measure that would specifically prohibit abortions for club foot and cleft palate.

The UK’s Abortion Act says that an abortion may be carried out if the child “would suffer from such physical or mental abnormalities as to be serious handicapped,” but does not define what a “serious handicap” is.

About 40 babies were aborted in the UK between 1996 and 2006 because they had either club foot or cleft palate, mostly after 24 weeks, according to a recent report.

“I don’t classify either cleft palate or club foot as serious disabilities when they are easily correctable,” said Dorries. “I think most members of the public would say aborting babies for these reasons late in pregnancy is wrong.”

She said she did not back the idea of extending such a ban to other disabilities, such as Down syndrome.

From ABC News, more reaction to the story about the parents who used new technology to screen their embryos for one without the BRCA1 gene.

Dr. Sherman J. Silber, director of the Infertility Center of St. Louis at St. Luke’s Hospital, says doctors have been prescreening fertilized embryos since 1990, when people first started trying to avoid having children with cystic fibrosis.

A similar phenomenon has taken place, Silber noted, in families that have had autistic children and would like to avoid having another.

“For autism already in couples that have children, they’re requesting [pre-implantation diagnosis] with sex selection, because, obviously, it’s so much more common in boys than in girls,” Silber said. “There are couples that have had several children with autism … that have been requesting sex selection just to have only females.”

Earlier stories here and here.

(Photo from Infertility Center of St. Louis at St. Luke’s Hospital)