From the Orange County Register:

The Goodwill of Orange County, California, has opened a new 12,000-square foot gym, designed especially for people with disabilities at a cost of $7 million. The goal is to create a workout that is “really accessible,” says a Goodwill official.

“In our general society, when we think of gyms, we think of healthy people exercising and they’re physically fit,” said Mae-Ghan Fletcher, a services coordinator with the National Multiple Sclerosis Society’s Costa Mesa office. “At Goodwill, everyone has some sort of a disability so it’s a little bit of a safer environment. This is a place where you don’t have to compare yourself to others.”

From Fortune Small Business/CNN Money:

Dr. Glen House, who became quadriplegic at 20, teamed with biotech executive J.W. Roth to found Disaboom.com. The company is a fast-growing social network aimed at the 50 million Americans with disabilities and their caregivers. House’s goal: to help them “live forward with their conditions.”

The site offers advertisers an opportunity to reach a previously untapped market, including a reported 72,000 registered users. An excerpt:

… House demonstrates that disabilities are no obstacle in the brave new world of technology. If anything, the determination they engender provides a clear business advantage. According to the U.S. Census Bureau, the percentage of self-employed Americans with disabilities has grown from 12% to 15% since the dawn of the Web. For the rest of us, the figure has stayed static at 8%. Your next competitor may just zoom past you in a wheelchair.

Roth also launched companion sites Disaboomjobs.com, an employment site responding to the high unemployment of people with disabilities, and lovebyrd, a dating site for those with disabilities.

See earlier post here.

(David Yellen photo/Fortune Small Business/CNN.com)

From the Washington Post:

As a result of Sarah Palin’s candidacy, parents of children with Down syndrome are suddenly in the spotlight. They say they spend more time in doctors’ offices than most parents, endure stares from strangers, and are forced to advocate on behalf of their children. At the same time, they say that “raising a child with a disability can also unlock profound and uplifting truths about themselves, their children and the value of life in ways that others could never see.”

Philip and Adrianne Pedliken of Vienna, Virginia, say they love their son Ethan deeply, but “acknowledge that their lives are much harder, more emotionally wrenching and often lonely.”

Many parents also talk about how the phone never rings with invitations for a play date for their children or an offer to help carpool. Sometimes, they find themselves answering people who suggest that their child should never have been born.

… Just this summer, the (Pedliken) family succeeded in toilet-training Ethan, who will be 10 next month. Until then, nothing — strategies of behavioral therapists, covering the house with plastic sheeting — seemed to work.

“It was frustrating, not to mention expensive, to be diapering a child until he was almost 10 years old,” Philip Pedlikin said.

See also related story in the Washington Post: What is Down syndrome?

From the Los Angeles Times and the [Toronto] Globe and Mail:

Andre Lalonde, executive vice president of the Society of Obstetricians and Gynecologists of Canada (SOGC), says he is concerned that abortions in the case of Down syndrome may decline as women follow the example of Sarah Palin. Palin’s infant son Trig was born after she received a prenatal diagnosis of Down syndrome. From the Globe and Mail:

As a vocal opponent of abortion, Ms. Palin’s widely discussed decision to keep her baby, knowing he would be born with the condition, may inadvertently influence other women who may lack the necessary emotional and financial support to do the same, according to Lalonde.

Dr. Lalonde said that above all else, women must be free to choose, and that popular messages to the contrary could have detrimental effects on women and their families.

The SOGC last year issued a recommendation that all pregnant women be offered screening for Down syndrome. It is estimated that 90 percent of women in Canada who receive a prenatal diagnosis of Down syndrome decide to abort their pregnancies.

Krista Flint, executive director of the Canadian Down Syndrome Association (CDSS), said doctors generally paint a very dark picture of life with Down syndrome during prenatal diagnoses. The CDSS has challenged the ethical implications of the recommendations by the obstetricians’ group.

“We know overwhelmingly the message families get is ‘Don’t have this baby, it will ruin your life,’” Flint says. “And I don’t think people would look at Sarah Palin and see a ruined life. Regardless of politics, I think it’s a good example.”

See earlier post: Airbrushing away diversity — Ottawa Citizen

UPDATE: The Los Angeles Times notes in a ‘For the record’ item that its story noted above “mischaracterized” Dr. Lalonde’s comments. The item says Dr. Lalonde was not concerned that abortions in general would drop as a result of Sarah Palin’s candidacy. Rather, he was concerned that “that women would be influenced by Gov. Palin’s decision to keep Down syndrome children that they were neither emotionally nor financially prepared to care for.” The Times story noted above has been removed from the newspaper’s website.

Just when you think you’ve heard it all, people come up with some new ones. Questions, that is — about Sarah Palin’s baby son, Trig Paxson Van Palin, who has Down syndrome (at left with sister Piper at the Republican National Convention). Here are answers to some common questions.

1)  Down syndrome — that’s really bad, right? Doesn’t that mean he’s sickly and won’t live very long?

First of all, let’s think about this baby as just that — a baby. People with Down syndrome vary widely, and each has a unique personality, temperament, and combination of strengths and challenges. We haven’t been told anything about Trig’s health status yet, except that he has Down syndrome.

In general, people with Down syndrome have some degree of mild to moderate intellectual disability and have a higher risk for a variety of health problems, particularly heart trouble. At the same time their life expectancies have increased dramatically, from an average of about 9 years in the 1920s, to something reaching into the 60s today. (See my post here on Bert Holbrook Jr. of Waseca County, Minnesota, who just celebrated his 80th birthday.)

As recently as the 1960s, people didn’t know that people with Down syndrome were capable of learning, and sent them to institutions where they were most often neglected or abused. Most of the very negative images about them, and the worst health outcomes, date from that time.

With the improvements in education and health care of the last few decades, it’s not unreasonable to expect that children with Down syndrome born today can enjoy full, rich lives, form satisfying relationships, and gain skills that will allow them to work and make positive contributions to their families and communities.

2) If Palin opposes abortion rights, as she says, why did she have an amnio? Wasn’t that a waste of money?

Many women who oppose abortion nonetheless have prenatal testing so they can get information that may be useful in planning for their baby’s delivery and care. Gov. Palin has said she was glad to receive Trig’s diagnosis before he was born so she could learn about Down syndrome and come to terms with her son’s disability before she met him.

3) Ninety percent of American women who get a prenatal diagnosis of Down syndrome get an abortion. Doesn’t that prove people with Down syndrome have terrible lives?

Actually, no. People with Down syndrome are valued, valuable and contributing members of happy families. Their families report deep attachment to their children, and are saddened by those abortion statistics. Family members attribute the numbers to widespread public ignorance about people with Down syndrome; doctors who lack current information and aren’t well-trained to deliver prenatal diagnoses; lingering fears and stigma left over from the days when these people were institutionalized under horrible conditions; and unrealistic desires for the “perfect child.” See also this post.

(more…)

With no hope for recovery, death is the only way out

Ann Curry, on Dateline NBC, takes a film crew into Serbian institutions that look much the way institutions did in the U.S. a generation ago.

People with intellectual disabilities are shunned and warehoused, imprisoned without supervision under filthy conditions behind crumbling walls and rusted bars. They are given no treatment and meager care that may include being drugged or tied up day after day to control the anxiety and aggression that comes of being locked away. One man has been imprisoned in a crib for all of his 21 years. Among those shown are people with cerebral palsy, Down syndrome and other conditions.

Disability is a source of deep shame in Serbia, and parents are urged to put children with intellectual disabilities away in remote government institutions or risk financial ruin. Some surrender their children without ever glimpsing their faces.

Rasim Ljajic, a government official in charge of the institutions, acknowledged that the conditions are inhumane, but said the government does not have resources to fix the situation.

Said Laurie Ahern, associate director of Mental Disability Rights International:

The idea of being locked away and the idea that somehow these people, that their lives aren’t valuable, that they are less than human, because they were born with a disability. It’s horrendous.  And it’s awful. And it shouldn’t happen.

The video is here.

See earlier post here.

See also:

Reporter’s notebook, by Tim Sandler, NBC News producer

Shunned: Photos from inside Serbia’s mental institutions

From the BBC:

A UK charity has launched an informational campaign promoting the rights of people with learning disabilities to have sex and relationships.

The FPA, formerly known as the Family Planning Association, says research indicates people with learning difficulties are often denied help in pursuing relationships.

Julie Bentley, chief executive of FPA, said living independently meant more than “qualifications and securing a job”.

“Expressing your sexuality and enjoying a relationship is something everyone values,” she said.

… “Information and skills must be available to people with learning disabilities so they can enjoy intimate relationships without putting themselves at risk.”