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 Washington Post:

Tim Page, author of “Parallel Play: Growing Up with Undiagnosed Asperger’s” and a Pulitzer Prize winning music critic, answers readers’ questions about Asperger’s syndrome and its effect on his life.

Some excerpts:

“The diagnosis was helpful in a lot of ways — mostly in explaining some of the things that had proved difficult, sometimes even impossible, for most of my life. And I didn’t exactly “give in” to the condition, but being aware that I had it helped me make smarter choices.

“… I also admire the radical new autism activists, such as Aspies for Freedom, who believe that autism and Asperger’s should be considered “differences” rather than afflictions. I have some mixed feelings about this –  although I do think some of the things I ended up doing were enabled by my Asperger’s Syndrome, I still wouldn’t wish it on anybody, for I’ve felt pretty unhappy a lot of my life. Still, I love their punchy, radical spirit — and who knows? Perhaps the depression and anxiety that seem to accompany most cases of AS wouldn’t be there if we didn’t always feel so strange.”

From “Fresh Air” on National Public Radio:

Music critic Tim Page didn’t find out that he had Asperger’s syndrome until he was 45, three years after winning the Pulitzer Prize. He writes in his new memoir, “Parallel Play: Life As An Outsider,” that the diagnosis helped him to accept parts of his nature that were “not very changeable.”

Page says he acted out when he was young and constantly struggled to understand social norms. He found a refuge in the repeating patterns in music.

“I have this theory that Asperger’s syndrome has been hugely important for me with music, because it was the first world that made any sense to me. I didn’t really understand what was going on around me, I didn’t understand what people really wanted me to do. I was a very lost little kid. But my mom had this record player ….

“It allowed me passage into a world where everything made sense and where I felt this profound sense of being at home in the world.”

Related posts here.

Writing in the [UK] Times, columnist Tim Rushby-Smith says the recent death of Fiona Pilkington and her daughter point up the need to build positive attitudes toward people with disabilities through children’s literature. An excerpt:

In the light of the Fiona Pilkington case, where a mother was driven to take her own life and that of her disabled daughter, much has been said about the failure of the police and the local authority to respond to the harassment and violence directed at the family. However, the case also highlights a more fundamental problem with attitudes towards disability. We are at a point where racially motivated attacks are properly recognised and widely reported, yet assaults and bullying directed at a person with a disability is merely perceived as “anti-social behaviour”.

… Books and education provide an opportunity to move away from a point-and-stare culture, and can help all children to perceive those with a disability as part of normal, everyday life.

Rushby-Smith writes the ‘Life as a disabled dad’ column for the Times.

From ABC News (with videos):

Carly Fleischmann, a 14-year-old with autism who does not speak, is able to communicate by typing, according to her family and therapists. Her message:

“I am autistic but that is not who I am. Take time to know me, before you judge me. I am cute, funny and like to have fun.”

Carly has received intensive early intervention therapy from the age of three. Her family and therapists say she experienced a breakthrough at the age of  11, when she began to type independently. She has written that she feels like a normal person trapped in a body she cannot control.

She has her own internet blog and twitters regularly, answering questions about her experience with autism. She is also writing a novel.

Her family says no one is physically directing her or prompting what she should type. Experts caution that Carly’s abilities are extremely rare and that her case should not raise false hope.

Earlier post here.

(more…)

From USA Today:

Stephen White, the best-selling author behind 16 psychological thrillers, says in an interview that he lives with multiple sclerosis (MS), like one of the key characters in many of his novels.

… though White has never kept the fact that he has MS a secret, until now he has been reluctant to talk publicly about it and how it affects his life and informs his writing.

Of Lauren Crowder, his character with MS, White says:

“I had a very specific reason for giving her MS in the first story. It had to do with giving her a reason to be a reluctant participant in a romance,” he says. Crowder doesn’t appear in the latest novel, much of which takes place in New Haven, Conn.

If he had it to do again, White says he wouldn’t have burdened one of his continuing characters with a chronic illness. “It really limits. In a long series, you want to have as many degrees of freedom for your characters as possible. Lauren’s degrees of freedom are somewhat limited. She can’t suddenly get better or not have this illness.”

However, White says he has aimed to make her experience with MS realistic to help readers understand the condition, and a large portion of his mail is related to her and MS.

In the New York Times, a discussion of the book “Design Meets Disability” by industrial designer Graham Pullin.

Alice Rawsthorn describes Pullin’s book as a “manifesto” that celebrates the heroes of disability design, “condemning many of the existing products designed for people with disabilities, and challenging designers to use their skills to develop inspiring alternatives.”

Pullin argues that those designing for people with disabilities need to come up with products that are both efficient and attractive, as has been done with eyeglasses.

Once classified as “medical appliances” by British doctors, they now come in countless styles, bear the names of famous fashion brands and are routinely sold with clear lenses to people who clearly don’t need to wear them. Tellingly, their designers often make no attempt to disguise glasses – or “eyewear” as they are now called – as they do with many other products, implying that it is somehow shameful to use them.

Earlier post here.

(Photo from the New York Times)