Text of remarks

by Patricia E. Bauer

delivered at the annual conference of

the Down Syndrome Guild of Greater Kansas City

March 28, 2009

It’s more than a quarter of a century now since Margaret arrived and our family’s journey began, a journey that started in isolation, seemingly without history. As far as we knew then, we were the first couple in the history of the world whose utterly adorable baby had gotten a diagnosis of Down syndrome.

My husband and I knew nothing about disability then and knew pretty much no one who did, and somehow we instinctively thought without discussing it that we wanted to keep it that way. We didn’t know what we were up against, and we didn’t want to know, for fear that knowing might make us fail.

Later I learned that some doctors then were withholding routine medical treatment from infants like mine. In the month that Margaret was born, the great legal minds of the day were debating whether or not that was okay. Friends of mine at the newspaper were following this debate, I found out later, but couldn’t bring themselves to tell me.

The memories of those dark days fall away when I come into bright rooms like this one, full of hope and good cheer and the knowledge of allies made and battles won. I am humbled by your enthusiasm and encouraged by your shared sense of commitment. I salute your imagination, your willingness to learn and your generosity of spirit. Yes, indeed, we have come a long, long way in a very short time within the span of Margaret’s life, and of mine.

Of course, the tricky thing about being part of the disability community is that you don’t know you’re a member of the club until one astonishing day when it all becomes clear, and you realize that pretty much everybody ends up in the club sooner or later. But it took me a while to figure it out.

For the first decades of my life, I wasn’t consciously aware of what was going on. I didn’t know, for example, that the average lifespan of a person with Down syndrome in the year I was born was something like fifteen years, or that many – maybe most — people with Down syndrome in those days were sent off to live in institutions that were more like prisons.

One of those institutions was just a few miles from my home, a hulking stone pile behind huge metal gates. We kids held our breath whenever we rode past. (more…)

Peter V. Berns, executive director of the The Arc of the United States, is calling on President Obama to use the controversy around his Special Olympics remark as an opportunity to advance public understanding and acceptance of people with intellectual disabilities. The comments come in a letter to the president posted on the organization’s website.

People with intellectual and developmental disabilities “understand that public attitudes, misinformation and negative stereotypes are the biggest obstacle to their inclusion in the community,” Berns said. “Join us in breaking down the attitudinal barriers that stand in the way of full inclusion.”

Berns called on Obama to convene a White House meeting to address the following:

• The 700,000 individuals and their families on waiting lists for home and community based services;
• Recent reports of abuse and neglect of people with intellectual disabilities in Iowa and Texas;
• The institutional bias of the Medicaid system and the lack of adequate funding for community care; and
• The need to address long term care and support.

(File photo from [UK] Guardian)

‘Disabled aren’t a joke’

By Chicago Sun-Times executive news editor Zach Finken:

My son is a joke to the president of the United States.

That’s how it feels after President Obama told Jay Leno his woeful bowling skills are “like Special Olympics, or something.” The most powerful man in the world scored some cheap laughs on “The Tonight Show” by mocking people like my autistic 8-year-old.

… My son is just a second-grader, and he’s already an outcast among his classmates. What do the normal kids in my son’s class learn from Obama?

They learn that my son is a punch line.

(Photo from Chicago Sun-Times)

From the New York Times, with video:

A new modern dance company that calls itself Gimp is confronting public stereotypes about disability. Many of its members have undeveloped or amputated limbs, or bodies that defy common expectations.

Dancer Catherine Long enjoys the way the dance production makes audiences reexamine what they think they know about disability. She was born without hip sockets, kneecaps or a left arm.

“When I put myself out there on stage, I’m inviting people to look at me and I’m controlling the looking,” she says, “Whereas when I’m in the street I’m not inviting people to look at me but they do anyway.

“So this puts me in a bit more of a controlled situation, where I might then be trying to encourage people to look at themselves, and look at the way they look at different bodies, and their own body.”

The company is performing this week in New York.

See also earlier post: Go ahead and stare

(Photo from New York Times video)

From the Fort Worth Star-Telegram:

Entertainers from the Micro Wrestling Federation say they enjoy their work as “midget wrestlers,” but the Little People of America group asserts that the shows reinforce stereotypes.

Gary Arnold, vice president of public relations for the Little People of America, a 6,000-member national organization which advocates for people with dwarfism, said the word “midget” is degrading and that “events such as midget wrestling reinforce archaic stereotypes; specifically that it is acceptable to objectify and gawk at people based upon physical difference.”

The Micro Wrestling Federation expects to perform 125 shows across the nation this year and can charge up to $25 per ticket for an audience of 500 adults. Each wrestler is under contract and receives a cut of photo sales and merchandise, like T-shirts that say “I Support Midget Violence.”

“People don’t come for the wrestling,” said federation owner Jack Darrell. “They come to see the midgets.”

(Star-Telegram photo)

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)

Editors at the New York Post say New York Governor David Paterson can’t do his job well because he’s blind. They argue that Paterson needs to rehire Charles O’Byrne, a top aide who was fired last year for tax evasion.

An excerpt:

Today Albany teeters on bankruptcy.

Paterson’s blindness severely constricts his ability to acquire basic information.

His administration is adrift; he is inconsistent, imprecise and often contradictory in his public statements.

To put it bluntly, the governor needs competent help.

Writing in Politico.com, Ben Smith says the Post has said “publicly something that’s often said privately.” An excerpt:

Paterson’s inability to read means that aides read him newspapers and government documents. It means that, (more…)