Disability news, Accessibility Issues, Disability Issues, Accessiblity News

Archive for June, 2008

‘Breast cancer-free’ baby claims called misleading, troubling

Monday, June 30th, 2008

From the NBC Today Show (video is here); ABC Good Morning America:

Skeptics discounted the claim of a “breast cancer free” baby produced by genetic screening, saying that the screening does not guarantee the child will not get breast cancer. Others expressed ethical concerns about the procedure and worried that it could mark the beginning of an age of designer babies.

“Damocles’ sword is still hanging over her head, as for every woman. She can still get breast cancer – maybe just not this specific kind,” said Dr. Nancy Snyderman, NBC’s medical editor.

Susan Love, of the David Geffen School of Medicine at UCLA, agreed. “Since most breast cancer — 90 to 95 percent– is not hereditary, she still has a high chance of getting it, just as we all do. I think we are better to put our energies in trying to figure out how to prevent breast cancer in everybody than to pick and choose who we allow to be born.”

Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania, said genetic screening poses an ethical dilemma.

“Where is this going to take us in the future? How far will we go in letting people decide their babies?” Caplan said.

Snyderman urged a public discussion of the moral and ethical questions underlying prenatal genetic testing and selective termination, which she said are already widely available. Prospective parents are making prenatal selections based on sex, height, eye color and other factors, she said, as well as cloning.

See earlier post here.

British woman says she conceived ‘breast cancer free’ baby

Monday, June 30th, 2008

From the [UK] Times, video on MSNBC:

A woman has conceived Britain’s first baby guaranteed to be free from hereditary breast cancer.

Doctors screened out from the woman’s embryos an inherited gene that would have left the baby with a greater than 50 percent chance of developing the cancer.

The woman, who wishes to remain anonymous, said her husband has a strong family history of breast cancer that was caused by the BRCA-1 gene. The couple used in vitro fertilization to create 11 embryos, then used preimplantation genetic diagnosis (PGD) to select embryos that did not have the gene. Of the 11 embryos, six carried the gene. Two embryos that were free of the gene were implanted, resulting in a pregnancy.

The couple’s doctor said the technique allows parents to avoid “the potential guilty feeling of passing on this genetic abnormality to a child.”

Related post here.

‘Mind-altering drugs and the problem child’

Monday, June 30th, 2008

Claudia Meininger Gold, writing in the Boston Globe, offers an alternative to psychotropic drugs for children. She says parents need help accepting and understanding their children with attention and behavior problems. If parents can manage their own frustration with their children, she says, they can better help children manage their behavior.

Too often, she says, children are put on medications for reasons having to do with pharmaceutical marketing, time constraints on primary care doctors, and “our society’s expectation of a quick fix.”

Studies have shown that a parent’s capacity to think about and understand a child’s experience from the child’s perspective is associated with a child’s increased cognitive resourcefulness, greater social skills, and better capacity to regulate emotions. Healthcare policy, and the education of pediatricians and mental health professionals, must move toward giving our full support to parents of young children in this way. Only then can we hope to improve the mental health of the next generation.

Claudia Meininger Gold is a pediatrician in Great Barrington, MA

Review: Firsthand accounts of life with disabilities are ‘riveting’

Monday, June 30th, 2008

In the Washington Post, a review by Nelson Pressley of “Inside/Out . . . Voices From the Disability Community,” which played last weekend at the Kennedy Center’s Family Theater. The show featured seven people with disabilities testifying about their lives.

The approach was quick and dry — sentences tended to be short and factual — yet the performance was consistently powerful and eye-opening. Don’t know much about Moebius syndrome? Meet Matthew S. Joffe (standing at right, above), who explains its effects (his face can’t move), and describes his fears and successes as he’s lived with it…

… Every so often, one performer asked another, “What does disability mean to you?” The responses were personal and sometimes surprising, and the question compelled viewers to consider for themselves in the wake of the show’s coolly shared, sharply rendered lives.

The show was presented by VSA Arts, a nonprofit organization. Their website is here. (VSA arts photo in the Washington Post)

Athletes disabled by war lead Iraqi Paralympic team

Monday, June 30th, 2008

From The New York Times:

Iraq, which has been in three wars in two decades, has a robust Paralympic team. Twelve of the 20 athletes who have qualified for the Paralympic games are disabled war veterans.

“As a country that participated in many wars since 1980, we have many disabled people,” said Ahmed Abid Hassan, a wheelchair fencing coach. “Our Paralympic team is better than our Olympic team.”

Above, Rasul Kadhim, a weight lifter with a paralyzed leg. (New York Times photo)

Brutal attack prompts hate crime bill in Ohio

Monday, June 30th, 2008

From the Cincinnati Enquirer:

Legislation has been introduced in Ohio that would expand the state’s hate crime law to provide protection to people with disabilities.

The measure was prompted by the attack last February of Ashley Clark, a teenager who has an intellectual disability and was born without limbs. Authorities say she was violently attacked in her rural home by two assailants who tied her up, beat her with a baseball bat, robbed her, cut off her hair and destroyed her prom dress.

The bill’s sponsor says that the attack would qualify as a hate crime if the proposed law were in place because Clark’s disability appears to be a key reason why she was targeted. Even if the bill were passed, it would have no bearing on the trial of the two suspects in the case.

Earlier post here.

State Rep. Thomas Kennedy poised for new achievement

Monday, June 30th, 2008

From the Boston Globe:

Massachusetts State Rep. Thomas P. Kennedy, one of a small number of quadriplegics in elective office in the United States, is running unopposed for the state Senate.

That no one in either party is competing with Kennedy for a highly coveted office is an indication of Kennedy’s political stature.

On Beacon Hill, Kennedy is known as a thoughtful and savvy legislator. Representative Frank M. Hynes, a Marshfield Democrat who has served in the House with Kennedy for 25 years, said lawmakers stop what they are doing when Kennedy rolls down the aisle and takes a microphone next to the podium.

“He commands attention,” said Hynes. “What he says gets heard.”

While Kennedy says he is sympathetic to disability issues, he does not portray himself as a leader of the cause when compared to longtime disability advocates. He says he encounters few obstacles while fulfilling his duties, and draws support from the Disability Foundation, an international organization of elected officials with disabilities.

(Disability Foundation photo)

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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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