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Archive for the ‘NOT2BEMISSED’ Category

‘Blindness’ movie opens to protests

Saturday, October 4th, 2008

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; DenverJacksonville, 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…)

Op-ed: Let’s change our focus regarding Down syndrome

Friday, October 3rd, 2008

Writing in the Minneapolis Star-Tribune, David M. Perry says he had hoped that Trig Palin’s presence in the limelight might  bring hope to families of children with disabilities. Instead, he says, the national conversation has focused on Sarah Palin’s decision not to have an abortion — a focus that isn’t helpful to families of kids with disabilities, nor to expectant parents who are fearful about disability.

Choosing life is not about what happens in utero, but about what follows. Choosing life is about knowledge. It’s about training doctors and nurses how to talk to expectant parents. Most of all, it’s about providing an antidote to fear by changing the perception of disability. That’s where Trig’s voice, even before he learns to talk, needs to be heard. But his voice is being drowned out by the partisan hubbub of people from both parties who are focused on the single issue of abortion. Let’s change, or at least expand, the message.

What I want is a serious national conversation about raising children with disabilities — the way that government, schools, churches, doctors, HMOs, and most of all friends and families can help us.

… Let’s talk about the federal mandates that order, but do not fund, early intervention. Let’s talk about universal health care and special education. Let’s talk about how to help our children find meaningful lives as adults. Most of all, let’s talk about ways to ensure that everyone sees people with Down syndrome as, first and foremost, just people. Then we can get to work on the syndrome.

David M. Perry is the father of a 2-year-old boy with Down syndrome and an assistant professor of history at Dominican University in River Forest, Ill.

Where are the questions about disability issues?

Friday, October 3rd, 2008

Susan LoTempio, writing on the website of the Poynter Institute, offers journalists a list of questions that should be posed to politicians about issues of concern to the more than 54 million Americans who have disabilities. “Unfortunately, it’s rare that a reporter asks a disability-related question, but it’s time to start,” she says.

[No such questions were asked during last night's vice presidential debate. Palin's pledge to "work with families of children with special needs" was mentioned in passing but not explored.]

Among the questions on LoTempio’s list are queries about health care; the high rate of unemployment among Americans with disabilities; the lack of funding and enforcement for the Individuals with Disabilities Education Act (IDEA); low graduation rates for students with disabilities; services for veterans; lack of accessible and integrated housing; Medicare and Medicaid regulations; and community-based services and supports. An excerpt:

Digging deeper means not just reporting that vice presidential candidate Sarah Palin has a baby with Down syndrome, but also reporting on what families in that situation need to raise their children. For many families, the need is great.

… You’re not covering the presidential campaign? Politicians seeking local and state offices should also go on the record on these issues.

LoTempio is the readership editor at the Buffalo News. The non-profit Poynter Institute is a school for journalists, future journalists and teachers of journalists.

(Photo from Poynter.org)

Walgreens plant to focus on people with disabilities

Monday, September 29th, 2008

From the Hartford [CT] Courant:

Walgreens Co. is nearly finished building a $175 million distribution center in Windsor, CT, in which one-third of the projected 550 jobs will go to people with disabilities.The center will serve 275 drugstores.

In a similar Walgreen facility in Anderson, SC, 42 percent of the workers have one or more disabilities. The driving force behind the company’s disability hiring effort is Randy Lewis, the company’s senior vice president of distribution and logistics. Lewis’ son has autism.

Walgreens worked with technology experts to create equipment and software that meets the needs of people with disabilities. Company officials anticipate that the technological improvements will “increase worker productivity by 20 percent and boost long-term job retention in all of its modernized distribution centers.”

Earlier posts here and here and here.

Congress OKs Kennedy-Brownback disability diagnosis bill

Thursday, September 25th, 2008

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…)

Sequenom shares jump after new DS test data announced

Wednesday, September 24th, 2008

From Associated Press, CNN, company press release, Fox News:

Shares of Sequenom Inc., a San Diego biotech company, rose sharply in premarket trading today after the company announced new results on a prenatal test for Down syndrome that relies on a sample of the mother’s blood.

The company announced yesterday that its SEQureDx test detected Down syndrome accurately in the first and second trimester of pregnancy in about 200 tests with no false positives or false negatives, matching earlier data from another 200 samples.  The company said it hopes to bring the test to market next summer.

Shares jumped $3.39, or 16.5 percent, to $23.95 from $20.56 during premarket training.

Presently available noninvasive prenatal screening methods for Down syndrome can only tell women the statistical risk that their fetus has Down syndrome, but do not offer a conclusive diagnosis of individual pregnancies. Presently, women must undergo amniocentesis or chorionic villus sampling in order to know for sure whether the baby they are carrying has Down syndrome. Amnio and CVS are invasive techniques that both carry a small but significant risk of miscarriage.

Analysts hailed Sequenom’s announcement, with Lazard Capital Markets analyst Sean Lavin raising his price target to $44 per share, up from $34. The company’s stock was trading at around $5 before the announcement of the new technology earlier this year.

The market for prenatal testing is estimated to have multi-billion dollar potential.

See earlier posts here.

See the company’s share price here.

Senate passes disability diagnosis bill

Wednesday, September 24th, 2008

The Senate yesterday approved by unanimous consent a bill designed to provide support to parents and prospective parents who receive a diagnosis of a disability. The measure now goes to the House, as it appears increasingly likely that Congress will extend beyond this Friday’s scheduled adjournment.

Promoted by Sens. Edward M. Kennedy (D-Mass.) and Sam Brownback (R-Kan.), the measure provides that families receiving a prenatal or postnatal diagnosis of Down Syndrome or other conditions would be offered up-to-date information about the nature of the conditions and be connected to support services. It would also set up a registry of parents willing to adopt children with disabilities.

It was among a package of health care bills that went down in July when Senate Republicans blocked them in a partisan power play, and also failed to muster the Senate’s unanimous consent last week when Sen. Brownback brought it up again. The House passed a different version of the bill earlier.

The bill, known as the Prenatally and Postnatally Diagnosed Conditions Awareness Act, represents a rare moment when advocates on opposing sides of the abortion debate join forces.

Sen. Kennedy, a staunch advocate of abortion rights for women, has promoted it as a pro-family measure that would provide needed support to couples who are routinely undergoing prenatal testing as part of obstetrical care. With more women postponing childbearing to later years, more of them are receiving diagnoses of genetic and other abnormalities in their pregnancies.

Sen. Brownback, who passionately opposes abortion, has portrayed the measure as an effort to save the lives of babies with Down syndrome. “To deny children with disabilities a chance at life will make us more insensitive, callous and jaded, and will take away from the diversity of American life,” he said in remarks on the Senate floor last week. “I don’t think this is what we were meant to do.”

Presidential candidate John McCain signed on as a co-sponsor to the bill earlier this month shortly after naming Alaska Gov. Sarah Palin as his running mate. Palin’s son, Trig, has Down syndrome.

See also:

Reid: Senate work far from finished — UPI

Finish line is slipping away for Congress – The Hill

About the Blog

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 blog attempts to explore what we know about disability, and to chronicle the efforts of people who are seeking new ways to address familiar challenges.

Join journalist Patricia E. Bauer as she sifts through current news and commentary, bringing you the best information about what's happening now and what it may mean for you and your loved ones.

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