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Archive for the ‘Down syndrome’ Category

Exclusion of student with DS from college class sparks concern

Friday, November 26th, 2010

Protest continues to mount over a decision by Southern Oregon University to exclude a non-credit student with Down syndrome from an introductory ceramics course. The decision comes almost 35 years after the enactment of federal legislation that opened public school doors to students with disabilities.

More than 700 people have signed an online petition urging the reinstatement of 20-year-old Eliza Schaaf. An online column by San Francisco school board member Rachel Norton on SFGate.com called the university’s decision “appalling.”

College officials abruptly withdrew Schaaf from the course last month, saying that she is not qualified to meet the academic standards necessary to participate. Alissa Arp, dean of SOU’s college of arts and sciences, wrote in a letter to Schaaf that her presence in the class had resulted in a “disruption of curriculum delivery and interfered with the teaching and learning environment for the instructor and other students.” Schaaf had attended Ashland High School and had been fully included in her educational career up until that time.

SOU dean of students Laura O’Bryan upheld the decision this week in a letter that referred to Schaaf’s enrollment as a “novel situation.”

“The non-admitted policy was not designed or intended to provide an avenue for participation to individuals who are not otherwise qualified for admission to SOU,” O’Bryan wrote.

Norton, a former member of the San Francisco Community Advisory Committee for Special Education, noted that Eliza’s family had apparently made a reasonable effort to prepare the university and assure that the young woman had an orderly transition to college life.

An excerpt from Norton’s column:

I hereby wish to invoke the power of the Internets to show Southern Oregon University how wrong-headed they are by failing to see the benefits (let alone the moral imperative) of including a person with a disability.

… 35 years after the signing of IDEA, students who have experienced inclusive environments throughout their K-12 educations are now knocking on the doors of colleges like yours. Eventually, they’re going to gain access. Wouldn’t it be better if you figured out a way to welcome them?

Related commentary:

An editorial from the [Medford, Oregon] Mail Tribune says Schaaf should be allowed to complete the course, but the editorial writers leave open the question of whether the university has an obligation to serve what they call an “unusual” student. An excerpt:

… While it is difficult from the outside to understand all the issues in this case – SOU isn’t talking about it – it’s clear that universities should be able to bar some students from some classes. Even students who graduate from high school have no intrinsic right to a college education: It’s for those who can meet the academic requirements of entry.
But the university does bear responsibility for making clear who can and can’t attend.

… [The family's] experience speaks not necessarily to whether Schaaf’s presence in the class was appropriate but to how well the university was, or wasn’t, able to handle an unusual student’s desire to enroll.

The university ought to let Schaaf finish out the term in ceramics – and then turn its attention to addressing that issue long-term.

Related coverage:

A website maintained by Eliza Schaaf’s family carries many messages of support.

Georgia settles ADA suit over confinement of people with disabilities

Tuesday, October 19th, 2010

From the Los Angeles Times, Atlanta Journal-Constitution, AP/New York Times:

In a decision that is being hailed as a historic step toward enforcing the rights of people with disabilities, the state of Georgia has reached an agreement with the Justice Department to move many people with mental illness or developmental disabilities out of state psychiatric hospitals and into their communities.

The agreement, which settles a lawsuit alleging that the state was engaging in illegal segregation of people with disabilities, follows a federal investigation that found an “alarming frequency” of preventable deaths, suicides and assaults in the hospitals. From the LA Times:

As part of the agreement, Georgia will stop admitting people with developmental disabilities, such as Down syndrome and autism, into its state hospitals by July 1, 2011. The state will move all developmentally disabled patients from state hospitals to “community settings” by July 1, 2015.

The state must also expand community-based services for about 9,000 mentally ill patients.

“This is a monumental step forward for people with mental illness,” said C. Talley Wells, an attorney with the Atlanta Legal Aid Society, one of a number of advocacy groups that worked with the Justice Department under friend-of-the-court status. “No longer will people be confined in a state hospital who could be living much fuller lives in the community.”

Touchdown video seen round the world

Thursday, October 14th, 2010

Steve Kelley, Seattle Times columnist, reflects on Ike Ditzenberger, the 17-year-old high school football player with Down syndrome whose touchdown run was captured on video and circulated around the globe. At last count, the Youtube clip documenting Ike’s effort had gotten more than 2.36 million views.

Writes Kelley: Ditzenberger’s touchdown, which he accomplished with the active support of both teams, was “a reminder of everything that is good about sports and about life.” An excerpt:

Ike’s story is about much more than this one football play.

It is a reminder of the infinite capacity of the human heart. It is about Mark Perry’s compassion. It is about the ability of the young players from Lake Stevens to understand the importance of the moment and act selflessly when it would have been so easy to be selfish.

It is about the Snohomish team’s unconditional love of their teammate and about Ike’s parents’ love for their child.

“We’ve seen Ike brighten,” Kay Ditzenberger said. “He no longer sits in the back at the assembly. He’s right there in the front row. Football has elevated his self-opinion. He doesn’t feel different. He doesn’t perceive his handicap. They’ve given him the gift of normalcy.

“They (Snohomish players) set aside the handicap and saw the person first. They recognize the handicap secondly and they accommodate and adapt to that.”

See also:

  • Time magazine
  • Seattle Times video. Includes interview with coach Mark Perry: ‘I think this is a moment when the humanity and the sportsmanship shine through.’
  • Seattle Times story: Ike’s prom date with Emily Zylstra, the homecoming princess and Snohomish County Dairy Princess.

Abortion of surrogate fetus with DS sparks ethics debate

Thursday, 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

Thursday, 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

Heroes? Victims? Or just plain parents …

Wednesday, 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?

‘Monica & David’ premieres Thursday on HBO

Tuesday, October 12th, 2010

For couple with Down syndrome, does love conquer all?

Newsweek calls this Tribeca-award-winning documentary “a triumph” and “a refreshing and rare story for television.” It’s a chronicle of the courtship, marriage, and happily-ever-after of Monica and David, two young people who have Down syndrome.

The Washington Post calls it “a moving affair, a film that can inspire tears of joy within the first five minutes.”

At a time when characters with disabilities are almost unseen on TV, filmmaker Ali Codina provides an intimate portrait of these two as they struggle to balance their desires for independence with their need to rely on others for assistance. The pair live with family, and have not been able to find work.

Codina tells the Miami Herald that she hopes the film will help build public awareness and acceptance of people with disabilities .

“That was always my goal throughout the making of the film: To get it to the largest audience possible who may know very little about disabilities,” Codina says. “Once the viewer connects with the love story, you can start dealing with broader issues, such as addressing the fact that we don’t often acknowledge adults with disabilities as adults. We treat them as children. I also hope people who see Monica & David start to think differently about employment for the disabled. It’s a pretty tough reality in terms of what’s available for them.”

… “Monica & David is one of the greatest love stories of all time,” says Anthony K. Shriver, founder and chairman of Best Buddies. “I am also hopeful that it will be a wake-up call for all of us about the endless love, passion and ability that all individuals with intellectual disabilities possess.”

More coverage in the Denver Post. The movie’s home page is here.

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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