Excerpt of a column by Charlotte Moore in the [UK] Guardian:

When the prenatal test is introduced, it will make no sense to decree that a mother can choose to terminate, say, a Down’s baby, but is obliged to keep a potentially autistic one. It’s inevitable that many will be terminated.

Autism often means sleeplessness, eating problems, self-harming, aggression, destructiveness, bizarre behaviour of all kinds. It can destroy marriages, and it certainly doesn’t help your finances. I would never condemn a mother who decided that she couldn’t cope with these possibilities.

But autism also means unique perceptions, special talents, weird humour, a view of the world untainted by greed, envy, malice, vanity, ambition. Our family life is as rich and as meaningful as any other; my sons’ lives are not tragic, and nor is mine. A society that aims to remove all the variables that make human life so fascinatingly complex is not a society I want to live in.

Related post here.

(Guardian photo)

Author Diana Wagman writes in the Los Angeles Times that her 90-year-old father remains alive after a massive stroke, but she wishes he would die. She says he has access to the latest medical care and is not in a coma or in pain, but he is only occasionally responsive and relies on a feeding tube for survival.

Her father is an atheist who made clear in an advance medical directive that he did not want to be kept alive by extraordinary measures.

An excerpt:

… My husband thinks we have not respected my father’s wishes and that we are failing him by keeping him alive. One of my sisters agrees.

I know she’s right … Still, two months ago he was laughing at our president – although he couldn’t remember his name and called him simply “that joker.” He was able to hold his newest grandchild. He had moments of joy. The question becomes: “How many moments are enough to justify a life?”

On a recent visit with her father at the hospital, Wagman says she leaned in and whispered to him “that it was OK to stop fighting. I told him we all loved him and we would never forget him. I said it was time to die. It was not easy, and I cried. ” After leaving for the airport the next morning she reflected, “I don’t want to be the one to remove the feeding tube, but I am not sorry I said what I did. It is time for him to go.”

From the [UK] Guardian, a special issue on the culture of deafness.

Among the featured articles:

I wouldn’t have minded if my baby had been born deaf, but the embryology bill suggests I should –  Rebecca Atkinson says the embryology bill currently before the House of Commons curtails the rights of deaf parents. The bill would prohibit the implantation of an embryo known to have deafness when other hearing ones are present. An excerpt:

… This is not about tweaking the genes of a hearing embryo, a technical impossibility. It’s about laying two potential children in embryonic form side by side and affording more right to life to the hearing one by making it illegal to issue preference to the deaf one … this is not about creating a hearing child and then making it deaf. It’s about not being able to give life and therefore equality to an embryo that is already deaf.

…as a deaf person I can’t help but feel slightly affronted that the bill affords more right to life to you the hearing reader, than me the deaf writer, were we to be lying side by side in embryonic form in a petri dish. Indeed, it makes it illegal to choose me over you.

(more…)

From the Orange County Register:

The Goodwill of Orange County, California, has opened a new 12,000-square foot gym, designed especially for people with disabilities at a cost of $7 million. The goal is to create a workout that is “really accessible,” says a Goodwill official.

“In our general society, when we think of gyms, we think of healthy people exercising and they’re physically fit,” said Mae-Ghan Fletcher, a services coordinator with the National Multiple Sclerosis Society’s Costa Mesa office. “At Goodwill, everyone has some sort of a disability so it’s a little bit of a safer environment. This is a place where you don’t have to compare yourself to others.”

From Fortune Small Business/CNN Money:

Dr. Glen House, who became quadriplegic at 20, teamed with biotech executive J.W. Roth to found Disaboom.com. The company is a fast-growing social network aimed at the 50 million Americans with disabilities and their caregivers. House’s goal: to help them “live forward with their conditions.”

The site offers advertisers an opportunity to reach a previously untapped market, including a reported 72,000 registered users. An excerpt:

… House demonstrates that disabilities are no obstacle in the brave new world of technology. If anything, the determination they engender provides a clear business advantage. According to the U.S. Census Bureau, the percentage of self-employed Americans with disabilities has grown from 12% to 15% since the dawn of the Web. For the rest of us, the figure has stayed static at 8%. Your next competitor may just zoom past you in a wheelchair.

Roth also launched companion sites Disaboomjobs.com, an employment site responding to the high unemployment of people with disabilities, and lovebyrd, a dating site for those with disabilities.

See earlier post here.

(David Yellen photo/Fortune Small Business/CNN.com)

From the Washington Post:

As a result of Sarah Palin’s candidacy, parents of children with Down syndrome are suddenly in the spotlight. They say they spend more time in doctors’ offices than most parents, endure stares from strangers, and are forced to advocate on behalf of their children. At the same time, they say that “raising a child with a disability can also unlock profound and uplifting truths about themselves, their children and the value of life in ways that others could never see.”

Philip and Adrianne Pedliken of Vienna, Virginia, say they love their son Ethan deeply, but “acknowledge that their lives are much harder, more emotionally wrenching and often lonely.”

Many parents also talk about how the phone never rings with invitations for a play date for their children or an offer to help carpool. Sometimes, they find themselves answering people who suggest that their child should never have been born.

… Just this summer, the (Pedliken) family succeeded in toilet-training Ethan, who will be 10 next month. Until then, nothing — strategies of behavioral therapists, covering the house with plastic sheeting — seemed to work.

“It was frustrating, not to mention expensive, to be diapering a child until he was almost 10 years old,” Philip Pedlikin said.

See also related story in the Washington Post: What is Down syndrome?

From the Los Angeles Times and the [Toronto] Globe and Mail:

Andre Lalonde, executive vice president of the Society of Obstetricians and Gynecologists of Canada (SOGC), says he is concerned that abortions in the case of Down syndrome may decline as women follow the example of Sarah Palin. Palin’s infant son Trig was born after she received a prenatal diagnosis of Down syndrome. From the Globe and Mail:

As a vocal opponent of abortion, Ms. Palin’s widely discussed decision to keep her baby, knowing he would be born with the condition, may inadvertently influence other women who may lack the necessary emotional and financial support to do the same, according to Lalonde.

Dr. Lalonde said that above all else, women must be free to choose, and that popular messages to the contrary could have detrimental effects on women and their families.

The SOGC last year issued a recommendation that all pregnant women be offered screening for Down syndrome. It is estimated that 90 percent of women in Canada who receive a prenatal diagnosis of Down syndrome decide to abort their pregnancies.

Krista Flint, executive director of the Canadian Down Syndrome Association (CDSS), said doctors generally paint a very dark picture of life with Down syndrome during prenatal diagnoses. The CDSS has challenged the ethical implications of the recommendations by the obstetricians’ group.

“We know overwhelmingly the message families get is ‘Don’t have this baby, it will ruin your life,’” Flint says. “And I don’t think people would look at Sarah Palin and see a ruined life. Regardless of politics, I think it’s a good example.”

See earlier post: Airbrushing away diversity — Ottawa Citizen

UPDATE: The Los Angeles Times notes in a ‘For the record’ item that its story noted above “mischaracterized” Dr. Lalonde’s comments. The item says Dr. Lalonde was not concerned that abortions in general would drop as a result of Sarah Palin’s candidacy. Rather, he was concerned that “that women would be influenced by Gov. Palin’s decision to keep Down syndrome children that they were neither emotionally nor financially prepared to care for.” The Times story noted above has been removed from the newspaper’s website.