From EITB.com:

Among the featured offerings at this year’s Sundance Film Festival is Yo, También (Me, Too), a Spanish film about a college-educated man with Down syndrome who falls in love with his free-spirited co-worker.

The film explores themes of conformity and difference, and challenges public perceptions about the capabilities and needs of people with Down syndrome.

Pablo Pineda, who is reported to be the first person with Down syndrome to earn a college degree in Europe, received the Silver Shell best actor award at Spain’s leading film festival last year for his performance in the film. Co-star Lola Dueñas took best actress honors.

From the trailer:

She: Why me? You don’t know anything about me.

He: Because you make me feel normal.

She: And why do you want to be a normal person?

A music video featuring the film’s title song is here.

An interview with Pineda (in Spanish) is here.

(Photo from www.sundance.com)

Isolation, scarce resources are still big problems

Marketers of specious miracle cures woo desperate parents

Michael Fitzpatrick, a London doctor, says autism has become better known and accepted in the 15 years since his son was diagnosed with the condition. But has increased awareness improved the quality of his son’s life? Not really, he says. Services remain scarce, unrealistic media portrayals exacerbate social ostracism, and high unemployment and public spending cuts promise an uncertain future. From the  [UK] Times:

Today autism seems to be everywhere. It has become a common, even fashionable condition, linked to talent and creativity or simply making people interestingly different. But the fact that everybody now talks about autism does not make life any easier for people affected by it.

… “Normalizing” autism may reduce stigma, but at the risk of trivializing the problems of those with more severe learning difficulties and also of underestimating the extreme aloneness that results from the social impairment of autism, even in higher-functioning individuals.

Efforts of well-meaning doctors, parents often had tragic results, authors find

In the San Francisco Chronicle, Heidi Benson reviews “Normal at Any Cost: Tall Girls, Short Boys, and the Medical Industry’s Quest to Manipulate Height.”

Authors Susan Cohen and Christine Cosgrove trace the history of height manipulation over the decades, interviewing men and women whose lives were changed by it. They find some dire consequences, including infertility, depression, and even death.

“This book is not an indictment of technology,” the authors write, “but an illustration of how quickly medicine can move from curing disease, to treating disability, to leveling disadvantage, to satisfying desires for perfection.”

“… we end the book with a plea for an acceptance of diversity and an end of conformity,” Cohen said. “Adolescents will always be miserable, but they may be less miserable if people value and understand diversity.”

Cosgrove (at right) was one of thousands of girls who were given synthetic estrogen in the 1950s to limit their growth. She spent five years taking daily doses of diethylstilbestrol (DES), and has been left with lingering questions about the long-term effects of a drug now linked to elevated risks of fertility problems and cancer.

See also: Tall West Michigan women say there’s no need to be afraid of heights — Grand Rapids Press

(San Francisco Chronicle photo)

‘I am not a puzzle, I am a person’

By Elizabeth Svoboda in Salon.com:

A growing group of advocates say people with autism should be valued and celebrated for their uniqueness, not aggressively treated in hopes that they will become “normal.”

Proponents are skeptical of therapies that force people with autism to behave like typical peers, whom they call “neurotypicals,” and say therapists should instead focus on helping them deal more effectively with the non-autistic world.

… the rhetoric [used by autism advocates] is often as strident as anything out of the deaf-pride movement. Some autistic people even use the pejorative term “curebie” to refer to people who hope for a cure for the condition. Organizations like Autism Network International view efforts to cure autism as similar to misguided efforts to cure homosexuality and left-handedness.

In the wake of the death of Ivan Cameron, British comedian and actress Francesca Martinez reflects in the  [UK] Telegraph on her life with cerebral palsy. She says her disability is “like hair color, eye color, height or weight, just another arbitrary feature that those around you cease to focus on and which, ultimately, becomes normality.”

An excerpt:

“… The media does not represent society truthfully and keeps “difference” largely invisible, and this means it is not seen as a normal part of life. Anyone can become disabled — the fact is, we will always be people first, with things we can and can’t do second. I think everyone in life has their own “disability” — something that challenges them — whether it is visible or not.”

See also

• The faith and strength of a child — Tim Shriver in the Washington Post’s ‘On Faith’ section
• Ivan Cameron: One mother offers insight into the suffering of cerebral palsy victims — [UK] Telegraph
• David Cameron did an ‘extraordinary job’ of caring for Ivan: doctor — [UK] Telegraph

(Photo from [UK] Independent)

Writing in the Huffington Post, James Moore introduces family friend Jeremy Vest, left, one of the hosts on MTV’s new show “How’s Your News?” All the show’s hosts have disabilities of one kind or another. Jeremy’s is Williams syndrome.

An excerpt:

Most of us do not have a handicapped person in our lives and, when we can, we likely avoid the complication. We suspect there is nothing we can understand and little we might do to help or make a difference. But not to worry. The How’s Your News? crew has sufficiently proved that they do not need us and they are doing just fine. More importantly, they have given us a window on their world to show us they laugh and hurt and cry and love and communicate and misunderstand with about the same degree of proficiency as those of us without what is described as a handicap.

… We never worried about Jeremy because there was a tenderness and an honesty in who he was as a person and he had no ability to understand the difficult odds. He just went after the thing that he loved and he got it: music, and people, and travel, and, yeah, the girls are coming around, too. The program he is now helping to produce and narrate is quickly becoming a cultural icon that says people who are different from normal can have meaningful and useful lives. How’s Your News? is hopeful and redeeming, not just for the parents of people with handicaps, but for all of us who did not understand or hear their secret song.

Earlier posts here, here, here and here.

(Photo from How’s Your News?)

In an interview on Wisconsin Public Radio, author Jonathan Mooney says our culture’s concept of normal is damaging to everyone, not just people who are identified as different.

Mooney, who had dyslexia and didn’t learn to read until he was twelve, is the author of “The Short Bus: A Journey Beyond Normal.” His book documents a four-month journey that he took around the country in a converted special-ed bus (the “short bus” of the book’s title.) Along the way, Mooney came to terms with his differences as he confronted his preconceptions about other people who have been labeled as disabled.

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