reflections related to disability advocacy, family and (needed) cultural change
Friday, August 22, 2008
Disability Beliefs and A Wrinkle in Time
Well, it’s been a big week at our house. My daughter started college yesterday. I have been have been extremely emotional at times—happy or just plain sloppy. I really am so proud of her and this IS what I have always wanted her to do (grow up, that is), but… at the same time…
Just put your money in tissues, that’s all I have to say.
Earlier this week I was completely floored by the simplest thing: my daughter is going to be commuting this semester and was cleaning out her room to make space for college stuff. On the top of the box of things-no-longer-needed was an old, paperback copy of A Wrinkle in Time by Madeleine L’Engle. I dissolved in a puddle.
I loved that book so much when I read it as a kid that I saved it for my own child and now… my child is done with it…
So I did what any person who is working nights, dragging kids to play rehearsals, supporting the disability rights movement and watching a highly stressed daughter get ready for college and crying a bit would do—I curled up on the couch and read it.
There’s a lot that I have always carried with me from that story. I totally embraced that a person doesn’t have to be perfect to be able to make a difference, and that sometimes what seem like flaws can be strengths, and that flawed people can be loveable—I was a pretty introverted teen, I loved this stuff. And I have always wished for a tesseract when I am running late (you’re just going to have to read it!)
But there on in the middle of chapter 5 I found something that hit me in a new way. In the story the kids who are saving the day travel from planet to planet with guides. At one point they land on a planet where they can’t breathe and their hearts try to beat but they can’t expand, and they try to think but their thoughts are flattened out like print on a page…
It’s an emergency and their guides take them somewhere else immediately. The problem was that this was a 2 dimensional planet and people, being 3 dimensional, can’t survive there.
Is this or is this not the experience of disability?
Society takes 3 dimensional people with disabilities and views them and treats them as if they are 2 dimensional—flat, without depth or nuance or value, as if they are merely cartoons of actual people. And then the they create a world of expectations, behaviors and programs based on these 2D beliefs..
The societal prejudices that set this up are endless—we have trouble widening our world view to accept people with any differences as one of “us.”
We can’t value communication unless it is in the form of speech in the language we know, can’t appreciate mobility unless it involves particular leg movements, and won’t recognize learning unless it takes place through reading.
(eg: People can learn about Hamlet from listening to a tape, from a movie, from acting the story out, from hearing about it, from seeing or creating a diagram, but learning is only considered VALID if it is done by reading—this is like saying that words are only considered written if you use a blue pen.)
We write off any success that does occur as a “splinter skill.” We aren’t responsible to respect those.
We trust our 2 dimensional beliefs about people with disabilities so much we consider even just a request for better manners toward them an imposition—indeed an infringement of our rights.
We are shocked when people with disabilities assert rights themselves—to an education, a job, respect, a place to live, and an accessible community.
Even our ‘helping systems’ are often more interested in their own rules and identities than in what would make people with disabilities successful citizens. Even these programs sometimes reflect society’s 2 dimensional beliefs.
My friend was telling me last week about a conversation she had with a young guy she met who has Down syndrome. In their conversation he mentioned that he had just graduated from high school and was starting classes this week.
“Oh, that’s exciting, where are you going? What are you taking?” my friend asked.
“I’m going to learn to be a volunteer.” was his answer.
He is going to a program for the next year or two that will teach him to volunteer.
There is a 75% unemployment rate for people with disabilities and the PLAN is that he will learn to volunteer. This 2 dimensional planning is yielding 2 dimensional results—yet, in 5 years when he still doesn’t have a job society will blame him and his disability.
Now, we spent the day yesterday at college orientation with my daughter. There were about 500 incoming freshmen there and I am certain that none of the parents at that school was leaving their kid there so they could learn to volunteer. Who would pay tuition for just that?
We like that her school has community service as a stated value. We believe that people are more than their jobs. We know that our kids are not guaranteed jobs in their field. And we know that it is a tough economy. Yet everyone at that school is preparing for paid work.
Why do you think colleges are set up to develop careers and programs for people with disabilities are not? Many college kids do not have learning difficulties, yet their programs are clearly work focused… hmmm….
Someone is paying for this guy’s program and the expectation of that program is 2 dimensional: people in this class will learn to contribute—which is good. They will not learn to expect pay (or the respect and power that comes with it.) And later when the graduates can’t increase their independence on $0/hour, this will be seen as the deficit of disability rather than as affirmation that they, like everyone else, need income.
We live 3 dimensionally ourselves and create 2 dimensional options and expectations for people with disabilities and sometimes they can barely survive.
In the book the guides take the kids to a different planet.
Very appealing. But somewhat unlikely nowadays…
Here it’s the planet that must change—the societal view of disability must be expanded… and the rescuers are us.
For this Self Advocates are Becoming Empowered (and advocates applaud.)
I am the mother of three, wife of one. I am a Partners in Policymaking graduate and a committed disability advocate. I want to catch up on my scrapbooking, learn more about art-journaling, get my house in order, read all the books I have set aside to read and change the world--not necessarily in that order. The opinions in this blog are my own and not those of any of employers.