Writing in the [UK] Guardian, Charlotte Moore interviews Anne Crosby, author of “Matthew,” a memoir about her son with Down syndrome. Crosby sent Matthew to an institution in the 1960′s under the advice of an eminent psychologist who urged her to protect her daughter, the “important” child, from her son, the “throwaway” child.

Moore says Crosby, now 79, has written a memoir “which describes with exceptional clarity and honesty the warring emotions unleashed by her son’s short life.” The book portrays Matthew, who died at 25 of a heart condition, as “funny, original, gentle, kind and with a power of empathy so acute that he was tormented by concern for the feelings of people, animals and even objects.”

Among the challenges Crosby faced at the time:

• Her husband, Theo, remained “implacable and unrelenting in his wish to send him away;”
• Theo’s mother believed Matthew was a punishment from God;
• Friends abandoned her because they thought Matthew was “harmful to their children’s psyches;” and
• Anne’s mother revealed that she had given up a child with Down syndrome herself and “smilingly recommended that Theo and I set about making similar arrangements for [Matthew].”

Charlotte Moore, who has two sons with autism, is the author of “George and Sam: Two boys, one family and autism.”

Earlier posts here and here.

(Family photo from The Guardian)

Report: People with disabilities four times more likely to be crime victims

From the [UK] Guardian:

Urgent action is needed if a “hidden catastrophe” of violence and hostility towards disabled people is to be tackled, says a damning report today from the [UK] Equalities and Human Rights Commission.

The report paints a bleak picture of disabled people’s experience of physical and verbal abuse and reinforces persistent warnings from disability campaigners that the problem has not been taken seriously enough.

… “Violence and hostility can be a daily experience … so much so that many disabled people begin to accept it as a part of everyday life,” the report says. “Disabled people – including those who have not experienced such behaviors directly – are all too often forced to go to extraordinary lengths to avoid it, thereby limiting their own lives.

Among the report’s conclusions:

• (more…)

From the [UK] Guardian, a special issue on the culture of deafness.

Among the featured articles:

I wouldn’t have minded if my baby had been born deaf, but the embryology bill suggests I should –  Rebecca Atkinson says the embryology bill currently before the House of Commons curtails the rights of deaf parents. The bill would prohibit the implantation of an embryo known to have deafness when other hearing ones are present. An excerpt:

… This is not about tweaking the genes of a hearing embryo, a technical impossibility. It’s about laying two potential children in embryonic form side by side and affording more right to life to the hearing one by making it illegal to issue preference to the deaf one … this is not about creating a hearing child and then making it deaf. It’s about not being able to give life and therefore equality to an embryo that is already deaf.

…as a deaf person I can’t help but feel slightly affronted that the bill affords more right to life to you the hearing reader, than me the deaf writer, were we to be lying side by side in embryonic form in a petri dish. Indeed, it makes it illegal to choose me over you.

(more…)

From Reuters, the Los Angeles Times, the New York Times, Associated Press, Australian Broadcasting Corporation, Canadian Broadcasting, USA Today and elsewhere:

Beijing opened the international Paralympic Games this weekend with an extravagant performance by a cast of thousands, as President Hu Jintao proclaimed that the government is dedicated to improving the lives of its 83 million citizens with disabilities.

“We stand for equality, oppose discrimination, care for the vulnerable and respect human rights,” Hu said, according to state media.

In preparation for the event, the government acquired 2,000 “kneeling buses,” installed a wheelchair ramp at the Great Wall, and spent $80 million to improve access in Beijing. Human rights groups say discrimination is still widespread in a country that has traditionally believed disabilities are caused by a person’s misdeeds in a previous lifetime, but were guardedly optimistic that the games could trigger a change in Chinese prejudices.

Historically, the Chinese government has not recognized the rights of people with disabilities. It has long advocated sterilizing mentally handicapped people. In 1994, China ratified a law calling for the abortion of fetuses carrying hereditary diseases and restrictions on marriages among people with mental problems or contagious diseases.

The opening ceremony of the Paralympics can be seen on the web here.

(Photo from Los Angeles Times)

From [Toronto] Globe and Mail:

Columnist and public health reporter Andre Picard says HIV-AIDS initiatives have sought to identify marginalized groups for treatment and prevention but “the largest of the marginalized groups has been callously ignored: People with disabilities.” An excerpt:

What few studies have been done — and there has been a lot more research done on transgendered people with HIV-AIDS than on disabled people with HIV-AIDS — suggests that the infection rate is significantly higher, probably two to three times more than the able-bodied and sound of mind.

Why?

In most societies, the disabled are shunned, at best hidden away and pitied. They are invariably the poorest of the poor: denied education and employment opportunities; unlikely to access health care services; frequent victims of physical and sexual violence; far more likely to end up in jail, particularly if they have a psychiatric illness.

(more…)

Update here: Rights groups prepare for boycotts, protest

A national coalition of disability rights organizations has formally requested a meeting with executives at DreamWorks/Paramount to express concerns about negative portrayals of people with intellectual disabilities in “Tropic Thunder,” an R-rated raunchfest that is set to open August 13.

(Earlier posts here and here.)

Ben Stiller plays two characters in the big-budget comedy: a fading action hero (above left with Robert Downey Jr. and Jack Black), and “Simple Jack,” a kind-hearted dolt with bad teeth whose onscreen presence prompts frequent use of words like “retard,” “moron” and “imbecile.”

At a hastily convened conference call yesterday, advocates voiced dissatisfaction over studio promotional materials that feature the slogan “Once upon a time … There was a retard,” as well as worries that the Simple Jack character reinforces hurtful stereotypes. The ad-hoc coalition also requested an advance screening of the film.

Among the organizations represented were the American Association of People with Disabilities, The Arc of the United States, Special Olympics, the National Down Syndrome Congress, United Cerebral Palsy, the Autistic Self-Advocacy Network, TASH, and the Alliance for Inclusion in the Arts.

While the group was optimistic that the meeting and screening would take place next week, it also discussed possible organized efforts to attract negative attention to the film.

In a New York Times article this morning that references this website, studio executives brushed aside questions about the way the film portrays people with disabilities. Here’s a comment from Stacey Snider, chief executive of the DreamWorks unit:

Ms. Snider acknowledged the risks inherent in the film. It is the first from DreamWorks, she said, to use a so-called red band trailer, which attempts to limit access to online viewers 17 or older. (Visitors to tropicthunder.com can view it only after clicking on “Restricted” and entering name, ZIP code and birth date.)

But the film’s humor, she said, comes at the expense of its own heroes, a corps of knucklehead actors, rather than of the handicapped or anyone else. “The star-studdedness of it, and the absolute playability of it, trumps it all,” Ms. Snider said.

And from the film’s star, director and lead writer Ben Stiller, there was this:

“It’s hard for me to tell people how to react,” he said. “The whole point of the movie is about actors, and the length actors will go to to advance their careers.”

For disability rights organizations, the stakes are high. “Tropic Thunder” is among the summer’s biggest films, with major stars, a production budget of about $90 million and a promotional budget of tens of millions more.

Whatever messages are embedded in the movie will soon be seen by millions of people, and could help to define how people with apparent disabilities are viewed by the public. Current figures from the U.S. Census Bureau put the number of Americans with cognitive disabilities at 14.3 million, or 6 percent of the population 15 and older.

There will doubtless be statements from studio executives who say the film is an equal opportunity offender. It pokes fun at racial stereotypes, with Robert Downey Jr. dressing in blackface and citing the theme song of “The Jeffersons.” Jack Black does fart jokes. Everybody’s offended, right?

Let’s answer that with some questions. People of different races surely were involved in the making of this film, and were able to express opinions about which references were humorous and which might have gone too far. So were people with different sexual orientations.

How many people with cognitive disabilities were involved in the making of this film? Were any people with cognitive disabilities involved in focus groups for this film? How many are employed by Dreamworks, or by parent company Paramount?

See Dave Hingsburger’s essay on one girl’s reaction to the word “retard”:
http://davehingsburger.blogspot.com/2008/05/that-word-this-girl.html

See also: Update: Meeting set between studio, rights coalition

(Paramount Pictures image from the New York Times)

From the [UK] Independent:

Advocates and officials held urgent talks in London last week to discuss the forced marriages of people with learning disabilities to foreigners seeking passports.

The Foreign Office’s Forced Marriage Unit dealt with more than 80 cases of forced marriages involving people with learning disabilities last year, amounting to more than one in five of the total cases reported to the government. Experts fear the true scale of the problem is far worse.

Support groups attribute these forced marriages to the stigma of disability in some ethnic communities, the social and cultural isolation of people with disabilities, the fear of aging parents that their vulnerable children will not be cared for, and the view that people with disabilities are commodities.

Rape, domestic violence and abandonment are common consequences of such marriages, according to support groups.