‘The first step is to talk openly about dementia’

From the [UK] Telegraph:

Best-selling author Terry Pratchett is urging greater awareness of Alzheimer’s disease, and says that discussing “the demon” is the only way to kill it. His remarks came at the launch of a new campaign by the Alzheimer’s Society to reverse stigma associated with dementia.

Pratchett, creator of the multi-million selling Discworld fantasy novels, was diagnosed with early onset Alzheimer’s last year and has donated £1 million to research into the disease.

“It’s a strange life when you ‘come out’ — people get embarrassed, lower their voices and get lost for words,” he said.

A report by the Alzheimer’s Society found that  people with Alzheimer’s were being left isolated and even having their diagnosis delayed as friends, relatives and doctors avoided discussing the disease.

LOS ANGELES — A coalition of performing arts unions today announced the launch of a major disability rights campaign to increase visibility and employment opportunities for actors, broadcasters and performers with disabilities throughout the entertainment and news media.

At briefings in Los Angeles, New York and Washington, leaders of the Screen Actors Guild, the American Federation of Television and Radio Artists and the Actors’ Equity Association said the campaign would work to reverse a history of exclusion and bring the world’s largest minority into the media mainstream.

“There is an alarming absence of people with disabilities in the media.  We are virtually invisible,” said “CSI” regular Robert David Hall (above), who uses prosthetic legs as a result of an accident 30 years ago. Hall, who serves as chairman of the tri-union committee of performers with disabilities, told a news conference at SAG’s Los Angeles headquarters that he plays one of only three disabled characters in recurring television roles.

“Kids and adults with all kinds of disabilities need to see positive images of themselves, and the world at large needs to see PWDs (people with disabilities) as the intelligent, talented and passionate human beings that we are,” he said.

SAG president Alan Rosenberg drew parallels between this effort and campaigns for civil rights protections for racial and ethnic minorities, women, lesbian and gay people, and seniors.

“The time for change is now,” he said. “Discrimination has to be challenged loudly, with a global effort to educate the public to the lack of inclusion and universal access in the entertainment industry.”

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… Obama has substantive plans for all people with disabilities

Writing in huffingtonpost.com, Paul K. Longmore says presidential campaign coverage has included a lot of talk about “special needs” children, thanks to Sarah Palin, but little about the issues that concern the 54 million Americans with disabilities of all ages.

Longmore compares the stances of the McCain-Palin ticket and the Obama-Biden ticket on healthcare, health insurance and social services for people with disabilities. An excerpt:

Even though 90 percent of the 54 million Americans with disabilities are adults, Palin, John McCain, and the news media have talked almost exclusively about children. And that talk has been mostly about “compassion” not “issues.” The McCain-Palin campaign website has a single page on “Americans with Disabilities for McCain,” but it says nothing about policy positions. Other pages mention autism and disabled veterans but no other issues.

In contrast, Barack Obama and Joe Biden have said little on the campaign trail about disability issues but their campaign website provides detailed policy proposals in a comprehensive “Plan to Empower Americans with Disabilities.”

Paul K. Longmore is a professor of history and director, Institute on Disability, at San Francisco State University. His “Open letter to the disability rights constituency” appeared exclusively on this site last month.

From the New York Times:

Heba Said Ahmed (left) won a gold medal for power lifting at the recent Paralympic Games in Beijing, and broke a world record.

But when she left Beijing and returned home to Egypt, Ahmed once again faced a society that views her as a second-class citizen because she cannot walk, a disability caused by a childhood bout of polio. An excerpt:

“I want to prove to society that I am better than what they think of me,” she said. “In Egypt, they think a handicapped person should just stay in bed.”

It is hard to overstate how different Ms. Ahmed is from many of those around her. It is all about attitude. Egypt is filled with people who face adversity, most often a function of poverty and systemic indifference. It is a class-based society with an unwritten contract that many people believe condemns them to live as they were born, poor and marginalized. There is a pervasive feeling of impotence, a collective belief that fighting back is futile.

But Ms. Ahmed never refers to fate; she talks about choices. She does not talk about obstacles; she talks about challenges.

… “There is no such thing as a handicap,” she said. “A handicap is in your thinking, or in your heart.”

From the Washington Post:

A planned four-acre development at Gallaudet University represents a dramatic shift in philosophy at the nation’s only institution of higher learning for deaf students. For the first time in its 144-year history, the school is designing buildings and streetscape with the express purpose of bringing together deaf and hearing people.

Officials say the changes at the campus in Northeast Washington are driven by cultural shifts, as a younger generation of students desires more integration into the broader world. Historically, the school’s separation was prompted by public stigma against deaf people, and a corresponding belief that they were better off immersing themselves in their own culture.

“It would create a connection to the city and tear down the walls,” said Hansel Bauman (above left), an architect retained by Gallaudet to help design the project. “It’s a sea change in thinking.”

Gallaudet drew national attention two years ago, when students shut down the campus to demonstrate against the selection of a new president.

(Photo: Hansel Bauman and Fred Weiner, Gallaudet’s executive director for preogram development. From the Washington Post )

From Florida Today, tcpalm.com:

A survey commissioned by the Florida Institute of Technology found that 24 percent of Americans believes autism is caused by vaccines, even though no scientific evidence supports such a link.

Sixty percent of those polled said the presidential candidates should include a plan for curing autism in their platforms, and eighty-three percent said that finding the cause and cure for autism should be a national priority. The survey was based on telephone interviews with 1,000 randomly selected adults across the country, conducted by GDA Education Research of Mount Pleasant, S.C.

Results of the survey were released to kick off Florida Tech’s second annual autism conference, “The Many Faces of Autism.”

Mary Beth Kunkel, dean of Florida Tech’s College of Psychology and Liberal Arts, described the finding as a surprise given the number of federal studies exonerating the mercury preservative thimerosal, once used widely in children’s vaccines, but rarely, if ever, included in vaccines today.

See also: Press release from Florida Institute of Technology in Melbourne, Florida.

From the Boston Globe, Colorado Springs Gazette and elsewhere:

Diana Chavez and Luis Herrera (at left) were among the protesters in Colorado Springs as members of the National Federation of the Blind picketed the opening of the film “Blindness” on Friday.

In addition to Colorado springs, there were news reports of protests in Boston, Des Moines; Denver;  Jacksonville, Florida; Rochester, Minnesota; Asheville, North Carolina; Dayton, Ohio; and elsewhere. Organizers said picketing was planned for 78 locations in 38 states.

Protesters handed out fliers and carried signs proclaiming the film a “travesty” and saying that “Stereotypes are the real evil.”

The film, which stars Julianne Moore, depicts a society  that is hit by an epidemic of blindness; chaos and depravity result. Protesters said the movie exacerbates stereotypes and stokes public fears.

“The difficulty of being blind comes from this low expectation of people who are blind,” said Mika Pyyhkala, who protested in Boston. “That causes more problems than any technical or direct blindness. This movie doesn’t portray the reality of what it’s like.”

See also:

Blind critics of film seem unenlightened — by Pete McMartin in the Vancouver Sun

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