Disability news, Accessibility Issues, Disability Issues, Accessiblity News

Abortion of surrogate fetus with DS sparks ethics debate

October 14th, 2010

Doctor says Canadian bio-parents demanded termination; Surrogate mom refused, then relented

‘Should the rules of commerce apply to the creation of children?’

From the Vancouver Sun, [UK] Daily Mail:

A Canadian surrogate mother reluctantly terminated her pregnancy at the insistence of the fetus’ biological parents after it was learned that the fetus had an elevated risk of Down syndrome, a Vancouver-area doctor revealed at a recent fertility medicine conference.

The case, in which the surrogate mother initially resisted the abortion and later relented, has sparked a spirited ethical debate over legal oversight of surrogacy arrangements.

Dr. Ken Seethram of the Pacific Centre for Reproductive Medicine in suburban Vancouver said the surrogate had signed a contract with the biological parents that would have absolved the couple of all financial responsibility for raising the child. He did not disclose the identities of the parties, but said the case had occurred within the past year and involved an embryo that had been created with the parents’ egg and sperm.

A bioethicist who has studied the issue extensively argues that contract law should not apply to the transaction, unless human life is to be treated like widgets in a factory.

“Should the rules of commerce apply to the creation of children? No, because children get hurt,” said Juliet Guichon of the University of Calgary. “It’s kind of like stopping the production line: ‘Oh, oh, there’s a flaw.’ It makes sense in a production scenario, but in reproduction it’s a lot more problematic.”

Related editorial in the Calgary [Alberta] Herald: ‘Vital debate needed on surrogacy and other IVF issues’

An excerpt:

It could be argued that the terms of the contract need to be spelled out clearly be-fore the surrogacy gets underway, but then that lends the resulting infant the status of a manufactured good — and nobody should be comfortable placing a human being on such a level.

… What needs to be kept uppermost in mind while sorting through the moral and ethical ramifications of the complex scenarios in vitro fertilization has engendered, is that a human being — not a commodity or product — is the subject matter.

Columnist: Documentary dismantles stereotypes about DS

October 14th, 2010

Boston Herald columnist Lauren Beckham Falcone on HBO’s documentary about a young married couple with Down syndrome:

“Monica & David” is more than a love story; it is a reverential, nuanced movie that shows that people with developmental disabilities want the same things everyone wants out of life: Love. Work. Companionship. Independence. These things aren’t the exception. They’re the expectation.

“Monica & David” airs today on HBO.

Other coverage of the movie’s HBO premiere:

Matthew Gilbert in the Boston Globe:

Reader, I cried … Monica & David” gracefully presents the world of people with Down syndrome at a crossroads, as embodied by these two individuals and their sweet, life-affirming love.

Ellen Gray in the Philadelphia Inquirer:

If you make it through the first 10 minutes dry-eyed, you’ll want to see an ophthalmologist.

ABC News: HBO film asks provocative questions about sex, children

Canadian nonprofit brings innovation to adult living

October 13th, 2010

On National Public Radio, a feature about a Vancouver nonprofit organization that is reimagining traditional ways of providing support to adults with disabilities.

The group, called Planned Lifetime Advocacy Network (PLAN), helps to set up and nurture long-term support networks for individuals. It also spearheaded a successful nationwide effort to set up tax-deferred savings plans for people with disabilities in Canada. Family members say the savings plans offer their loved ones real financial security.

As a result, banks and other businesses are “beginning to see individuals with disabilities not as charity cases, but as consumers with buying power.”

A for-profit spinoff of the group, Tyze.com, provides online software that helps people use the Internet to build support networks for their loved ones.

Related story in the Toronto Star: The Tyze that bind

$22 million grant to overhaul assessments in special ed

October 13th, 2010

From the Kansas City Star:

Researchers at the University of Kansas have received a $22 million federal grant to develop more effective tools for assessing the academic progress of students with disabilities. The grant is the largest in the school’s history.

The goal of the work is to replace once-a-year assessment tests with mechanisms that can be integrated into everyday instruction. Kansas and ten other states have agreed to use the new assessment tools to measure progress for kids with disabilities starting in 2014.

iPad boosts communication for kids with disabilities

October 13th, 2010

From the Wall Street Journal:

Parents and therapists say the Apple iPad tablet computer is providing an important new way to help kids with speech and communication difficulties. — and one that is both less expensive and more “cool” than anything previously available.

A growing number of speech-related applications, including Proloquo2Go, are being developed for Apple gadgets. Some allow the machines to “speak” on the child’s behalf, while others are used in speech therapy. Experts say the iPad’s universal appeal helps kids with disabilities bridge social gaps that may otherwise separate them from peers.

Unlike specialized speech devices, which cost about $7,000, the iPad generally is not covered by most government and private insurers. iPads cost between $499 and $829.

Earlier posts here.

Heroes? Victims? Or just plain parents …

October 13th, 2010

Do parents of kids with disabilities deserve admiration? Pity? Are they courageous? Self-important? Preachy? The public debate on these weighty topics has been raging for the past month over at the New York Times’ Motherlode blog site, and shows no signs of letting up.

It all started when Amy Julia Becker wrote a guest blog about her decision not to undergo prenatal screening or testing for Down syndrome during her third pregnancy. Becker and her husband, who have a 4-year-old daughter with Down syndrome, concluded that they didn’t need the testing because they had no intention of terminating a pregnancy if they found a nonstandard number of chromosomes.

The post triggered a host of reader comments that reflected society’s ambivalence toward people with disabilities. While many of the comments were supportive of Becker’s decision, some were critical and many focused on the perception that a person with a disability poses an unwanted “burden” on the family and the society at large.

Becker followed her initial NYT post with a second one, Is it harder to have a child with Down syndrome? In that post, which also drew a wave of emotional comments, Becker noted that her biggest stress comes not from her daughter’s disability but rather from the ignorant and negative judgments society makes about people who wear the distinctive signs of Down syndrome on their faces. An excerpt:

I have the privilege of being the mother of a child with Down syndrome and, through her, being introduced to a world of people who have taught me more about what it means to be human than my education and productive life skills ever could. Harder times may come, but I cannot imagine a day when I would regret her presence in my life or in our community.

And now for today’s installment on Motherlode: Guest blogger Stacie Lewis, whose 18-month-old daughter May has severe brain damage, says she shouldn’t be considered a hero just because her child has a disability. (Needless to say, emotional comments have begun to flow.) An excerpt from Lewis’ post:

I wonder why people are comfortable with the idea of disabled people and their parents as heroes. I fear it comes from the same place as that other disturbing sentiment, pity.

To this, I add a final thought.

It will come as a shock to some.

I am happy. My life is fulfilling. I worry sometimes, but I also find love and pleasure in my life every day. And, much of that is because of May, not despite her.

There are many people in the world who are alone and unhappy. Pity them.

Readers, what’s your take?

Vanderbilt enrolls students with intellectual disabilities

October 13th, 2010

From the [Nashville] Tenneseean:

A post-secondary program at Vanderbilt University has opened the door to college for eleven students with intellectual disabilities. Officials hope the Next Step program, described as “an education, not a day camp,” will help students learn career and life skills that will allow them to build more independent lives in the community.

The two-year program, which relies on the work of student volunteers, has a competitive admissions process and a hefty tuition cost of $10,000.  In addition to participating in classes and extracurricular activities with typical college students, the Next Step students get job training and work on basic life skills. Eleven students are currently enrolled.

“We want them to become lifelong learners. We want them to have a sense that, ‘I belong to this community,’ ” said Next Step program director Tammy Day.

And for the hard-driving, ambitious young Vanderbilt students sitting next to them in class, there’s a lesson to be learned, as well. You can get more out of a class than just a grade.

“They might realize it’s OK for there to be different reasons to be in class,” Day said.

Earlier post here.

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More than 50 million people in the United States have disabilities, a number that is growing rapidly as the population ages. Experts say disability will soon affect the lives of most Americans. This website attempts to aggregate news and commentary about disability, and to document the efforts of people who are seeking new ways to address familiar challenges.

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