By Anna Pickard in the [UK] Guardian

Extraordinary Measures, starring Brendan Fraser and Harrison Ford, features “a sad dad’s relentless efforts to fund a maverick medic’s search for a cure for his terminally ill kiddies.” The film was “inspired by” the story of John Crowley, a New Jersey dad who worked to find a cure for Pompe’s disease, a rare genetic disorder.

An excerpt:

The tagline is important in Extraordinary Measures. It appears right at the end of the trailer: “Don’t hope for a miracle. Make one.”

This could refer to many things. Conquering the apparently unconquerable through the power of the human spirit alone is a common enough theme at the movies. Or it could refer to a blatant attempt to win some award -– any award, but preferably a big, shiny, person-shaped one -– by an on-the-wane actor.

Extraordinary Measures will be released later this month.

Crowley and his family were featured in the book “The Cure: How a Father Raised $100 Million — and Bucked the Medical Establishment — in a Quest to Save His Children,” by Geeta Anand, which in turn started as a front-page story in the Wall Street Journal.

From the Baltimore Sun, Good Morning America, Fox News and elsewhere:

Mattie Stepanek was a boy with muscular dystrophy who wrote six best-selling books and inspired millions with his messages of hope and peace. He died five years ago just short of his fourteenth birthday.

Now his mother Jeni Stepanek, 50, has written a book about her son. “Messenger” tells the story of an ordinary boy who made extraordinary choices that led to meetings with celebrities and world leaders. Jeni Stepanek, who also has muscular dystrophy, says Mattie’s messages of peace did not end with his death. An excerpt of the book is here.

ABC’s segment included a reading of some of Mattie’s poems, including this one.

A New Hope

I need a hope … a new hope.
A hope that reaches for the stars, and
That does not end in violence or war.
A hope that makes peace on our earth, and
That does not create evil in the world.
A hope that finds cures for all diseases, and
That does not make people hurt.
In their bodies, in their hearts
Or most of all, in their spirits.
I need a hope … a new hope.
A hope that inspires me to live, and
To make all these things happen
So that the whole world can have
A new hope, too.

From the New York Times:

In the midst of the deepest and most widespread budget deficits in decades, more than 34 states have cut programs for vulnerable groups and people with disabilities, according to the Center for Budget and Policy Priorities in Washington.

Officials say the cuts may end up costing money over time, because they are often directed at preventive efforts that could offset longterm costs by keeping people healthy.

Arizona is among the states that have been hit hardest. Toddlers there with intellectual disabilities are not getting therapies that could bring lifelong benefits, and services to help people with disabilities live at home have been slashed.

Mary Lynn Kasunic, president of the Area Agency on Aging in Phoenix, described the potential consequences. “If you don’t give people a bath a couple times a week, change the linens and make sure they get their medicines, their health will decline much faster,” she said. “They end up in the emergency room in a crisis, and then in a nursing home.”

With audio from Mary Beth Thompson of Phoenix (above), who has reflex sympathetic dystrophy and is permanently disabled. “I can’t take care of the normal basics any more. I need help,” she said. “And I can’t get the help that I need because there’s no funding any more.”

Thompson is on a waiting list for state-financed services.

(Photo from New York Times)

But few are accessible

From MSNBC with video:

People with disabilities say video games offer them an avenue for making vital community and social connections. Yet game developers generally have been slow to make the games accessible, citing expense, scheduling pressures, and just plain ignorance.

Technology allows gamers with disabilities to “have a community that they build and have meaningful relationships with other people outside their home,” said Nissa Ludwig (above), a top-ranked bass player in “Rock Band.”

“And they continue working on social skills, and they don’t lose the ability to find joy in other people, which I watched my grandparents do as they were shut in,” she said. Ludwig has a progressive metabolic disorder that makes it difficult to walk.

(Photo from MSNBC video)

From the Tallahassee Democrat:

A tanking economy and budget cuts in Florida have meant less government-funded support for people with disabilities like 46-year-old Mary Ann Sanderford, who has muscular dystrophy.

Sanderford had been successful at an art-based adult training program, selling her wares and gaining confidence. Funding cuts now mean she must cut back from five days a week to three days. She spends her days off watching television.

The state’s Agency for Persons with Disabilities reports a waiting list of 18,000 Florida residents. Each of the people on the list is entitled to services, but does not receive them because of a shortage of funds.

When the legislative session begins March 3, lawmakers will have to decide where to further cut an already bare-bones budget. Many who work in health care and social services say cuts have already been deep, and more could be devastating. As more state departments receive cuts, so do the people they serve.

From the [Newark, NJ] Star-Ledger:

Writer/filmmaker Simi Linton was joined by dozens of activists near the Kodak Theatre red carpet in Los Angeles Sunday to protest the presentation of a humanitarian award to Jerry Lewis at the Academy Award ceremony.

Carrying signs carrying slogans like “Respect Not Pity,” and “Don’t Reward Bigotry,” they made the case that Lewis has done more harm than good as an advocate for people with disabilities.

“Jerry Lewis says everyone needs to raise money for these pitiable people,” explained Linton, 61, who was injured in a car accident 36 years ago. She is author of a memoir, “My Body Politic.” “We aren’t pitiable people. We are strong and resourceful and the most powerful people in the world.”

… “What we want is access and opportunity,” said Lawrence Carter-Long, 41, of New York, a former poster child for United Cerebral Palsy.

(more…)

From the Hollywood Reporter:

Comedy film icon Jerry Lewis was greeted with a standing ovation when he took the Kodak Theatre stage to accept a special Oscar for his longtime charitable endeavors.

… The Academy’s selection of Lewis to receive this year’s humanitarian award has drawn criticism. Some cited his use of the slur “fag” on his 2007 telethon, and during an interview in October on Australian TV, he referred to cricket as “a fag game.” Some in the disabled community also objected to the honor going to Lewis, claiming that he has perpetuated negative stereotypes involving people with disabilities.

Academy exec director Bruce Davis defended the Academy’s decision against such Internet-based protests, saying Lewis “has shouldered the back-breaking job of organizing, and then leading, an unparalleled three-day fundraising effort on behalf of muscular dystrophy sufferers.”

In an early edition of the New York Times, (reprinted in the Rochester, MN, Post-Bulletin):

Jerry Lewis, the 82-year-old comedian who has devoted much of his time to raising money for the Muscular Dystrophy Association, was scheduled to receive the Jean Hersholt Humanitarian Award.

But even that was not without complications. As of Sunday morning, advocates for people with disabilities were promising a demonstration in the vicinity of the Kodak Theater to protest the award as standing for an approach that tended to pity more than respect such people.

See also coverage in the Los Angeles Times.