From the [UK] Times:

Doll manufacturers are starting to turn out all types of “disability dolls,” with prosthetic limbs, hearing aids, blindness and Down syndrome (left). In addition to reaping potential financial benefits, dollmakers say they are hoping to build the confidence of children with differences, as well as educate children about disability and help to remove stigma.

The chief executive of the Down’s Syndrome Association in the UK cautions parents, saying the dolls lack a research basis and vary widely in quality and accuracy. Other professionals worry that they will serve to further isolate and stigmatize children who have lifelong conditions like cerebral palsy or Down syndrome.

Parents’ opinions:

Rosa Monckton: [Daughter] Domenica’s childhood is as full of joy, pain and sorrow as any other. She should be defined by her common humanity rather than by her Down’s syndrome. She does not want to live in a parallel world peopled with Down’s syndrome dolls distinguishable from the rest. She does not want to be defined by her facial features, or by the gap between her big toe and the rest of her toes being wider than most, or that she is half the height of her peers. Still less would she want these differences portrayed in a series of sickly looking, politically correct mannequins.

Simon Barnes: People with Down’s syndrome are people, not syndromes. The more such people we bump into in our daily lives, the less of a big deal it becomes. The Downsie doll is just one more minor symptom of a major change. The doll is ‘orrible, but I like it. The thought behind it, anyway.

From the New York Times:

Choreographer Jean Marc Genereux this week created a dance routine for the popular Fox Show “So You Think You Can Dance” to honor his daughter, who has Rett syndrome. The condition is caused by a genetic mutation on the X chromosome, and is characterized by normal early development followed by loss of motor skills. Audience members were reportedly in tears when the dance was performed. With video. Also on youtube here.

From The Associated Press:

Patient websites enable those with a range of critical and chronic illnesses to provide progress reports and receive support — all without having to repeat details in exhausting phone calls. Medical professionals praise the online tools for addressing the “emotional needs” of patients.

Free online services like CaringBridge and Carepages offer user-friendly formats that allow people to quickly set up sites to share medical and personal news. CaringBridge is supported primarily by donations from users, as well as sponsor fees from hospitals. CarePages also has arrangements with hospitals and sells advertisements.

On both sites, patients and family members share information about treatment and recovery from illnesses, accidents, or other medical crises. “We just think it’s made a huge difference for families,” Alan Goldbloom, president and CEO of Children’s Hospitals and Clinics of Minnesota, says of CaringBridge.

Everywhere you look there are stories about happy graduates these days, and some of them celebrate the accomplishments of people with disabilities. Here’s a sampling.

A word of warning for discerning readers: There are more than a few examples of cliched language here, from accounts of people who “suffer” from their disabilities, to those who “overcame” their disabilities, “rose above” their disabilities, or just didn’t seem disabled at all to those who knew them best. My favorite: the young woman who “refuses to use her disability as a crutch.” How’s that again? (See if you can find it.)

• Baltimore Sun: After high school, her time to shine; Teen with Down syndrome came long way (That’s Mimi Donaldson with her mother and aunt, above.)
  
• Philadelphia Inquirer: Her determined path to success (diabetes and blindness)
• Flint [Michigan] Journal: Without use of her arms and hands, extraordinary teen, Jessica Jones, readies to graduate near top of her Flint Southwestern class
• Orlando [Florida] Sentinel: Student with cystic fibrosis beats the odds to graduate with her class
• Lancaster [Pennsylvania] Intelligencer Journal: ‘Mac’ proves his mettle (Down syndrome)

From the New York Times:

In a cruel coincidence that scientists do not yet fully understand, research has shown that people with Down syndrome, a chromosomal abnormality, have a much higher incidence of Alzheimer’s disease at an early age. Some studies have said that 60 to 75 percent of people over age 60 with Down syndrome will have Alzheimer’s, though Dr. Ira Lott, who is in charge of the Down syndrome program at the School of Medicine at the University of California, Irvine, said those studies have been limited in scope.

So as advances in health care have extended the average life expectancy of people with Down syndrome to more than 50 years today from 25 in 1983, doctors and family members are now struggling to cope with a double dose of disability.

Scientists hope research on the link between Alzheimer’s and Down syndrome may lead to knowledge that could help prevent Alzheimer’s in the general population.

Extended feature by Sally Sara includes interviews with Gerry Thomas and his sister Beth (above).

See earlier post: Researcher Mobley offers hope to people with Down syndrome

He was 32 at the time, the essence of cool and one of the most powerful men in America. I was 25, toiling in relative obscurity in the depths of the White House press office.

He dropped by my office occasionally to read editorials clipped from out-of-town newspapers. I tiptoed by, awestruck, as he thumbed through my files of tattered clippings, certain that the information he sought was destined for the President’s ear alone.

My earliest impressions of Hamilton Jordan, the former White House chief of staff, were shaped by those clippings. Young and brash, the press had said of him at the start. Cocky. Brilliant. A political boy wonder, he had devised the strategy that brought Jimmy Carter to Washington.

With that 80-page memo, Hamilton had changed my life and the lives of countless others, leading us to Washington under a banner of change. Years later, I told him that he got the credit for my marriage, since I never would have met my husband had I not been among the lucky ones swept into the White House in the spring of 1977.

Hamilton waggled his eyebrows and quipped that he hoped it was credit –- not blame. He then got down to what really interested him, asking many questions about our daughter’s battle with leukemia and offering encouragement with an earnest squeeze of my hand.

(more…)

Stephanie Meredith, past co-president of the Down Syndrome Association of Atlanta, sends a response to Leslie Roberts’ blog post: ‘When abortion may be an acceptable choice.’ Roberts, a Canadian newsman and television personality, had written that abortion may be an acceptable choice when a disability is diagnosed prenatally.

Meredith writes:

Far from adding unendurable stress, parents of children with Down syndrome indicate that the stress involved with raising a child with Down syndrome is lower than expected (Hodapp et. al. 2001) and that families enjoy positive benefits from raising a child with Down syndrome (Blacher & Baker 2006). In fact, research suggests the parents of children with Down syndrome actually experience a lower divorce rate than couples who do not have children with Down syndrome (Urbano & Hodapp 2007), and the siblings of children with Down syndrome are typically more compassionate and well-adjusted than their peers (Dykens 2005).

While the reasons for this have not been fully explored and since most parents would resolutely deny the claim that they are saints, the evidence suggests that there is something to be learned from embracing genetic diversity. (more…)