Jean Vanier wins Templeton Prize

Jean Vanier, who for the past 50 years has sought inclusion for people with disabilities, has won the $1.7 million Templeton Prize.

He joins the ranks of Mother Teresa and Billy Graham in receiving the prize, which is given to people who make exceptional contributions to affirming life’s spiritual dimension.

“Our society will really become human as we discover that the strong need the weak, just as the weak need the strong,” Vanier, 86, said at a news conference announcing the prize.

In 1964, Vanier moved into a house with a number of adult men with intellectual disabilities. In doing so, he founded the L’Arche movement, which now boasts similar residential facilities in 35 countries.

Out of the shadows and into the light

Beate Sass photographs a parent brushing a son's teeth. Atlanta Journal-Constitution

Beate Sass photographs a mom brushing her son’s teeth.
Atlanta Journal-Constitution

The day-to-day lives of people with disabilities is not something that gets widespread attention.

Few of us ever see the parent brushing the son’s teeth or helping the daughter eat cereal.

Not many of us know a young person who has aged out of the public school system and has no prospects of getting a job because he has a disability. So he spends his days idle, bored and aimless.

These are images and situations that photographer Beate Sass knows well.  Beate, who lives in Georgia and has a daughter with disabilities, has decided to shine light on families like her own.

Invisible no more

She’s using her passion for photography to get more visibility for people like Donald and how, with appropriate services, he can lead a productive and fulfilling life.

She’s also drawing attention to individuals like Don and his parents, who are getting older and wondering how they will take care of their son.

Beate is on a mission to get the Georgia legislature to pass additional Medicaid waivers so that more people with disabilities can live independently and their families can have the support they need.

My hat’s off to Beate, who’s launched a website of images on the subject. She and I share the same mission — to bring people with disabilities and their families out of the shadows and into the light.

 

Same song, different verse

Since President Kennedy went public with his own sister Rosemary’s intellectual disability, the nation has moved away from housing people like her in institutions.

At Kennedy’s urging, Congress passed laws designed to move people with intellectual and mental disabilities into more natural community settings.

Now, 50 years later, the report card on how we’ve done in this massive effort is out. And we haven’t made good grades.

The money that supported expensive institutions has not transferred to the community. Families who have a person with a disability in their household are bearing an increasing financial burden.

Four years ago, The Arc, a family support organization released an eye-opening and discouraging report on how the nation has done in this era of change. It is titled Still in the Shadows with Their Future Uncertain.

And today, the New York Times ran an op-ed by a psychiatrist pointing out that the movement has not worked out well either for people with mental illness.

People in this population have ended up homeless or in prison or in other inappropriate settings.

In short, we still haven’t done what we need to do for our most vulnerable citizens. And the prospects for change are not good, given the budget-cutting that seems to be the rage across the country.

I encourage you to not only read the report and the op-ed, but to look at the comments on the opinion piece. They are equally enlightening.

 

 

 

I’m giving away books on Goodreads

If you’d like a chance to win a free copy of My Father’s Eyes, enter the contest on the Goodreads website (see link below.) Winners are encouraged (not required, of course) to post a review on Goodreads. You must be a Goodreads member to enter.

Goodreads Book Giveaway

My Father's Eyes by Sheila Allee

My Father’s Eyes

by Sheila Allee

Giveaway ends September 12, 2014.

See the giveaway details
at Goodreads.

Enter to win

Good Kings Bad Kings

Good Kings Bad KingsWith Good Kings Bad Kings, author Susan Nussbaum succeeds spectacularly in writing about disabilities from the viewpoint of people who live with them.

The disabled teenagers in the book make it clear in beautiful chapter-long monologs that they are just like everyone else. They want to be accepted and to be treated with respect; they want friendship and love and sex. They want to live as independently as possible and to have control over their own lives.

The book also is told from the viewpoint of staff members at the nursing home where the teens live. The workers describe how they handle overwhelming responsibilities but receive low pay and minimal training. They also describe the behavior of other employees, who don’t have the temperament to work in a nursing home and so they abuse the kids physically and verbally.

Horrors and justice

I was struck by the helplessness and vulnerability of some of the teenage characters. One severely disabled woman is repeatedly raped by a staff member. A young boy with ADHD who acts out in class is thrown into the time-out room and denied food after his teacher humiliates him in front of the other students.

There are more horrors in the book, but there are also tales with happy outcomes. The “bad” guys get arrested or fired. And some of the teens find the love and intimacy they yearn for.

The author, herself a wheelchair user, wrote the book to give disabled people a voice. She believes that people like her are not accurately portrayed in literature, film and in the general media.

“The way disabled people are represented by the dominant culture is most always as a foil for the nondisabled protagonist,” she says. “They’re in the story so the nondisabled person ‘can become a better person.’ Once the disabled character fulfills that role, they’re usually killed off, miraculously cured, or institutionalized.”

“Medieval Concepts”

Nussbaum also points out that in the case of kids with disabilities who live in an institution, it’s the adults who have all the power. “…when the adult in question has no emotional connection to the child, and the child’s welfare is turned over to that adult – as is the case in many institutions – terrible things can happen.”

I was also interested in her views on why these conditions exist even though many people who work in institutions have good intentions. She calls nursing homes, mental hospitals and residential facilities for people with disabilities “medieval concepts” that need to be done away with. The problems she writes about are systemic to institutionalization.

Even though the book has many tragic tales, it is told with an honesty and balance of humor that makes it very readable. I zipped through this excellent book in about three days. I highly recommend Good Kings Bad Kings.

[Author’s note: Not everyone affected by disability believes that institutions should become a thing of the past. Wendy English, a woman who lives in the Woodbridge Developmental Center in New Jersey, has a different perspective than Susan Nussbaum.]