From the Associated Press, USA Today, ABC News and elsewhere:

Retired Supreme Court Justice Sandra Day O’Connor took her family’s private battle with Alzheimer’s disease public Wednesday as she urged Congress to speed research and aid to fight the coming epidemic of the mind-destroying illness.

“Our nation certainly is ready to get deadly serious about this deadly disease,” she told the Senate Special Committee on Aging.

She has a personal stake. “My beloved husband John suffers Alzheimer’s,” she said. “He is not in very good shape at present.”

… More than 5 million Americans are living with Alzheimer’s disease. The number is poised to skyrocket, with 16 million people forecast to have it by 2050 thanks to a graying population. It already afflicts one in eight people 65 and older, and nearly one in two people over 85.

… Already, 10 million people are estimated to be sharing the overwhelming task of caring for a relative or friend with dementia, juggling jobs and other family responsibilities with little formal training, support or financial help available. The Alzheimer’s Association says the unpaid care they provide is valued at $89 billion.

O’Connor stepped down from the high court in 2005, saying she needed to care for her husband

Interview with O’Connor is here.

See earlier posts here and here.

Host Ira Glass enters Michael Phillips’ life, provides catalyst for transformation

Eric Deggans, writing in the St. Petersburg Times, documents the unlikely partnership between This American Life’s Ira Glass and Michael Phillips, a 27-year-old with a genetic muscle disease that has left him with the ability to move only his face and his thumb. Their collaboration became the story that kicked off TAL’s second television season last weekend.

Glass had heard about Phillips through one of his producers, and was

… drawn in first by his matter-of-fact recounting of how often he nearly dies when there is a problem with his respirator.

“The way he wrote about what those moments were like was utterly without melodrama,” said the host, who was intent on avoiding a typical, corny story about overcoming a disability. “It was just a very easy reporting of, ‘Here’s everything that goes through my head when I realize I may die in a minute.’ It was kind of amazing.”

After the exchange of many email messages, Phillips realized he wanted more independence from his mother, who still sleeps each night at his bedside so that she can respond if his breathing tube pops out.

Another goal was to spend more private time with his girlfriend Sara Rosenbaum (above, with Phillips), a St. Petersburg Times reporter whom he met through an online ad.

“There was no space in his life for me,” [Rosenbaum] said. “As he started writing Ira, he began to change; he realized what he wanted in his life . . . (and) after Ira left, I began to realize how much I cared for Mike after all.”

An excerpt of the show can be seen on the Showtime site here. Actor Johnny Depp provides the voice for Phillips’ emails.

From Catholic Online:

ANCHORAGE, Alaska — Local Catholic leaders and advocates for the disabled praised Gov. Sarah Palin and her husband, Todd, for fully embracing the arrival of their fifth child, who was born with Down syndrome April 18.

In a statement, the Palin family said they knew, through early testing, that Trig Paxon Van Palin “would face special challenges.”

Despite Trig’s disability, the Palins said they felt “privileged that God would entrust us with this gift and allow us unspeakable joy as he entered our lives.”

(more…)

From Time magazine:

South African sprinter Oscar Pistorius, a double amputee who races on carbon blades, is named to the list of the World’s Most Influential People in Time Magazine’s annual issue. Paralympian Pistorius is challenging the rules in an attempt to compete in the Beijing Olympics. (Earlier post here.) The International Association of Athletics Federations (IAAF) ruled in January that Pistorius could not compete because his blades were said to give him an unfair advantage.

Time’s profile of Pistorius was written by Erik Weihenmayer, the only blind person to have climbed Mount Everest (earlier post here). Weihenmayer says Pistorius is “on the cusp of a paradigm shift in which disability becomes ability, disadvantage becomes advantage.”

Also featured in Time’s annual 100 issue:

• Jill Bolte Taylor, a brain researcher who studied her own stroke and became a powerful voice for brain recovery (video here);
• Cyclist and cancer survivor advocate Lance Armstrong;
• Suzanne and Robert Wright, founders of Autism Speaks

Broadcaster’s older sister, who had developmental disabilities, was ‘most significant person’ in her life (At left, Jackie with parents Lou and Dena in a photo from the late 1940s)

From the San Francisco Chronicle, an extended interview keyed to the release of Walter’s memoir “Audition.” Walters discloses in the book that her relationship with her older sister Jacqueline was difficult. As a child, she says, she was jealous of the attention her sister received. Here’s the portion of the interview in which Walters discusses Jackie:

“I had wanted originally for [the book] to just be my childhood,” she says, dressed in a beige pantsuit and dove-gray heels. “I was going to call the book ‘Sister,’ because I thought that my childhood was unusual and poignant and because I thought that my sister, who would today be called intellectually impaired and then was called mentally retarded, was the most significant person in my life.”

… Walters is the first to admit her feelings about her sister were not always saintlike. “Because she was isolated, I was isolated,” she says. “I didn’t bring friends home and I didn’t have birthday parties and I didn’t join the Girl Scouts and it was my parents trying to protect her, although they certainly loved me. And I felt love for her but also pity, and there were times when I hated her and felt terribly guilty.

“I think anyone who has any member of their family who is disabled will feel that: You love them, you feel guilty, you feel torn. And she was my responsibility in many ways until she died.”

(more…)

From CNETNews.com:

Congressman Edward Markey (D-Mass.) is advocating for changes that would require Internet phone and video products to be made accessible to people with disabilities. Markey, who chairs the House telecommunications and Internet panel, is drafting a bill that would require Internet-based devices to be able to decode closed captioning and deliver oral narration.

“The wizardry of the wires and the sophistication of the software programs do little for those who cannot affordably access or effectively use them,” Markey said at a subcommittee hearing this week.

Among those supporting Markey’s efforts was actor Russell Harvard, who starred with Daniel Day-Lewis in There Will Be Blood. Harvard urged Congress to take closed captioning law “to its next level.”

“I and others who cannot hear are left out of this whirlwind of technological change (because) hardly any of these smaller devices display closed captions,” said Harvard, who is deaf.

From the Wall Street Journal, Boston Globe, New York Daily News and elsewhere:

Veteran journalist John Hockenberry and former CNN reporter Adaora Udoji have started co-hosting a new public radio morning news program this week. “The Takeaway” will feature lots of live material, and is designed as a counterpoint to NPR’s staid “Morning Edition.” Listeners will be encouraged to interact, respond, and take part in the development of editorial content.

Hockenberry has used a wheelchair since he was 19, a fact that’s not mentioned in the reporting about his new show. Fair enough, since disability is not a focus of the program and probably wasn’t factored into its boosters’ promises that the show will deliver “an unprecedented diversity of news coverage.”

But to give Hockenberry his due, this is as good a time as any to celebrate his 1995 memoir “Moving Violations,” a brutally straightforward explication of the American disability experience (or, as Hockenberry would say, “crip world.”) Pico Iyer, writing in the New York Times, compared Hockenberry with Ralph Ellison, saying his book “could, in fact, be described as an ‘Invisible Man’ for the disabled.”

(more…)