Tuesday, May 20, 2008

Smells Like Team Spirit

While on the New York Times website, I was scrolling through a list of articles and found one titled, "The Amputee Advantage?" It certainly caught my attention. Using "THE" in the title is definitive; there is an advantage. Then it's followed by a question mark; indicating a problem, difficulty or some query. Interesting... I clicked it.

The story was about Oscar Pistorius and his recently won his fight to try out for THE Olympics. Oscar is a double amputee and sprinter from South Africa. Four years ago he competed in the Paralympics, but this year he wants to compete in the other Olympics. Officials worried that his state of the art prosthetics gave him an unfair advantage.

Boy, give a guy a leg up (pun intended) and his able-bodied peers stand up and scream foul! It's foul alright!

Oscar runs using a prosthetic leg called a Cheetah. The manufacturer advertises it as a flexible foot prosthetic made with carbon fiber; it offers a person strength and flexibility. It's energy efficient; a user can walk further and longer. It offers more stability than a traditional prosthesis; and it gives the person a "natural" gait. You know, it works like a leg and foot; however, it does not look at all like a leg and a foot.

A picture of Oscar Pistorius sitting on a track, changing from his everyday prosthetic legs' to his running legsPhoto from the NY Times

And here is where, I think, the bigotry enters the scene. Since WWII, amputees have been put in a "normalized" medical rehab model of service delivery. Initially, legs were not very comfortable, stable or efficient, but by God, they looked like legs. Society thought that was more important than function.

Over the years the prosthetics improved to the point where they can be adapted to a particular activity like running, walking a fashion show runway, climbing, and dancing (even in dancing there are variations; legs that are bouncier for dances like the jitterbug and legs that are a better fit for a tango). This is somehow disturbing to the general public. They are saying, "These amputees are getting kind of uppity."

We've moved on. They have not. We have defined ourselves outside society's comfort level; not "their way" any more. So, we attack the environmental barriers we face. Someone invents Cheetahs so we can use them if our goal is to run like the wind, which is exactly what Oscar Pistorius is doing. It's no advantage; it's opportunity.

I first saw a Cheetah, or something similar, while enjoying one of my guiltiest of pleasures... reality television. A young woman, Sarah Reinersten, and her boyfriend competed in the sixth season of The Amazing Race. She battled along with the other adventurers; scaling walls and eating disgusting entrails. Certainly without the Cheetah, she would have been sitting on the couch watching it all, like me. But with it... well, she made me very proud. She didn't win. She and her partner went out 6th. But during her time, she came in first on two segments of the race. She was there to compete and that is what she got to do.

And that is what Oscar just won; the opportunity to compete. It doesn't mean he is going to Beijing; it means he gets the opportunity to try out for the team. He still has to shave an entire second off his time to qualify (which is a long time in sprinter time).

If he makes the team and goes to Beijing I'll be there, in front of the TV, rooting for him. No matter what color jersey he wears, or country he runs for, Oscar is on my team and we are part of the disability nation!

Tuesday, May 6, 2008

Standing in the Intersection

Home is not where you live, but where they understand you.
Christian Morganstern

I just had the best week ever! I attended the Coalition of Citizens with Disabilities in Illinois (CCDI) annual disability rights conference here in Springfield IL. It is my favorite three days of the year. I look forward to it and enjoy it more than the 4th of July, Thanksgiving, and Christmas all rolled into one.

About 400 people with disabilities across the state come together to learn, play, and fight for our rights (and occasionally with one another).

I feel at home there. I have grown older with many of them. We've fought battles and supported one another for a long time. We're a little less crazy than we were; we leave the parties first now; our "hook-ups" are not as sexually charged as they once were. We now watch the young ones feel the music and booze course through their bodies, only occasionally getting out on the dance floor to "show 'em how it's really done."

While I sound nostalgic for the good old days, I am not. Today I feel supercharged about the many young people at the conference. They were "on-fire" with enthusiasm, determination and expectations. My spark grows brighter when I am with them.

For many, it was their first opportunity to be in a crowd of people with disabilities. One young woman summed it up like this: "who knew there were so many people just like me like me?" She felt at home too; maybe for the first time. During our march on the state capitol building, past the statues of Martin Luther King and Abraham Lincoln, she yelled her chants louder than anyone and pumped her defiant fist in the air as strongly as any Olympian. I swelled with pride for one of our own.

It's a diverse crowd of people sliced anyway you want: by ethnically, age, gender, sexual orientation, and of course, disability. It's the tie that binds us together... and I love it.

Now I stand at the intersection of the best week ever, and the 37th disability blog carnival addressing disability identity, culture and pride, thanks to Ms CripChick. I get the opportunity to analyze what I just experienced.

First and foremost, I am very hopeful about our movement after attending the conference. I kept thinking about Margaret Mead's famous quote...

A small group of thoughtful people could change the world.
Indeed, it's the only thing that ever has.

Changing the World

Really, that's what our coming together and building a cultural identity is all about; whether it's a wheelchair rugby match or an ADAPT Action or my beloved CCDI Conference, it's always political.

A major reason to have a disability identity exists to redress grievances. It allows us to:

  1. Identify ourselves in the way we choose, not by society.
  2. Determine the language that defines us.
  3. Defend ourselves against attacks on our community's honor or dignity;
  4. Address the very real pressure against the interests of our community; and
  5. Gain advantages others enjoy.

There are probably more reasons too; but for me, it is the civil rights aspects of our cultural identity that are critical to our success as a people.

Disability Pride

Pride in our disabilities begins when we see people like us, who do not define themselves by cultural stereotypes, and we begin to see ourselves as having value.

Disability Pride grows when people abandon the medical terms that previously defined them and service delivery systems that patronize them. It grows when they understand the barriers they face are not personal failures, but systematic political disenfranchisement.

Disability Pride is the result of collective action as well as individual achievement. We are building a disability nation, a home for ourselves, a place of understanding and support.

Friday, May 2, 2008

Knowledge (Not Reading) is Fundamental

The "No Child Left Behind Act" has emphasized reading to the detriment of our children’s education.

I have recently been working with a few families whose children have reading disabilities. They are struggling to keep up with their non-disabled peers in all their school subjects, sometime students are several years behind their grade level. These are bright kids, who do not read well.

They have the ability to learn, just not by reading books; But, because they cannot read, they are failing history, physical and social sciences, mathematics, literature, and other classes. It is a ridiculous failure of our educational system that leads children with disabilities to drop out of school and become part of the under classes.

What is the purpose of teaching history? Is it to read text, or to learn the subject matter? What is the purpose of teaching classic literature? Is it to read the words, or understand the beautiful language and to take the journey along with the author? Social sciences help students learn about human interactions; should that information belong to only children who read?

Obviously, if a child can learn to read, he/she should learn to read; do it in a reading class. If a student is having difficulty reading, we should be compensating that disability in all other classes, without exception.

The truth is some people will never learn to read, despite chapter one reading programs, literacy or other training. For them, it is imperative we provide material in an alternate format accessible to them. Why educators are so reluctant to support learning, is just beyond any logical reasoning.

The National Instructional Materials Accessibility Standard (NIMAS) guides the production and electronic distribution of digital versions of textbooks and other instructional materials to accessible formats.

Here's what they have to say about their very important work:

The Need for Flexible Alternatives to Print

For many students with disabilities, the limitations of print technology raise barriers to access, and therefore to learning.

For students who cannot see the words or images on a page, cannot hold a book or turn its pages, cannot decode the text or cannot comprehend the syntax that supports the written word may each experience different challenges, and they may each require different supports to extract meaning from information that is "book bound." For each of them, however, there is a common barrier - the centuries-old fixed format of the printed book...

Very few students with disabilities presently have access to the accessible books they need. There are several reasons for that. In some cases, the problem is technical - schools do not have the technology they need to properly provide accessible versions to students, even if they had such versions. In other cases, the problem is ignorance - many teachers and schools do not understand the issue of access or the potential solutions that are available.

But for many students the problem is a frustrating distribution system; students can't get the accessible materials they need in a timely fashion. Present policies and procedures for disseminating accessible materials are archaic and inefficient, raising barriers rather than opportunities.

If knowledge is power, why are educators trying to keep children with disabilities powerless?