Susan's Blog

Saturday, December 1, 2007

We Must Walk(er) the Walk

They will beat their swords into market shares and their spears into social storybooks. Nation will not take up sword against nation, nor will they train for war anymore. — Me, and Isaiah 2:4 and Micah

What is going to happen to this country, to this world, if the numbers of autism keep jumping? Or, if science and medical technology allow people to live, who otherwise would have died in utero or from having been born prematurely? We all tear our hair out and cry to the heavens about the problem.

But — are the numbers the problem? Or is it just that we currently don’t have the resources to accommodate these people? And, if enough people have these problems, isn’t there the possibility that it will force society to change its values and find that money? If society had the money to take care of pain, to educate, to hire supportive staff, to house, to accommodate and employ — would it actually matter so much that some people could not sit quietly in movie theatres, stop from flapping in restaurants or playgrounds, have tantrums in supermarkets? I am talking about if there were enough money. The war in Iraq is costing around $720 million daily. Most people feel this war should never have happened in the first place. Even of those who do, many feel it is now a failed venture and the troops should be brought home. With so many other places on fire in the world, we cannot justify being only in Iraq, nor can we propose going into all the other places. We have to tend to our own gardens now.

If we tended to our own gardens, we would have enough money for the people in need in this country.

If we could build sufficient schools with enough space for small, separate classrooms when needed, but also with enough money to train regular education staff to include and mainstream wherever we could — and yet kept those classes small so that staff could be effective and everyone within could learn in their own style — we would not have a problem of having too many special needs kids. The problem results from not enough money, from mismanaged priorities — the Iraqi war is but one example — not from the people themselves with the issues.

If you think about it, it is actually a good thing, the changing face of our populations, the addition of multiple disabilities, of autism spectrum thinkers, of Down Syndrome classmates and friends, of kids with CP trying to speak and kids without CP learning to understand them. Our children are now used to kids flapping, working with aides, being pulled out for math support, using wheelchairs in elevators in schoolbuildings. Our kids are learning that bullying is wrong, (even if they still do it a little, you have to start somewhere). We have anti-bullying curricula now. That is lightyears better than in my day, when poor developmentally delayed Clayton came into the classroom and peed on the floor and we just laughed and no one said anything, no one explained, and I never got to know him. I was afraid and looked away.

The shifting ingredients of society, now in the classrooms due to the miracle of modern medicine, soon to be in neighborhoods and in the workforce, is a brilliantly beautiful manifestation of the wonders of life. Life was first formed from random mutations of cells and evolution. Most of us are now two-legged, sighted, reasoning, speaking. But some of us are not. Big Fucking Deal. We are all here, and we all must be brought to the table. Our children are learning that, and they are getting over it and incorporating these experiences into their daily lives.

This program was sent to me by a reader (thanks, Susan B!), and you will notice that the father talks about the boy’s hard life. It got me wondering, would Walker’s life be this hard, if there were no stigmas to overcome, no dismissals on face value? If no one looked away from Walker, but actually embraced him so that his father and mother could get a break?

If the community fearlessly embraced their “disabled,” unafraid because they were used to difference and because there was enough money to provide training and understanding, would Walker’s life and his father’s life be less isolated and sad? Perhaps it is the constant burden of feeling that difference = wrong, emphasized by the penny-pinching mentality of school systems, caused by lack of funds from the government, that contribute in a huge way to the disabled and their families feeling like outsiders, like grateful beggars.

Am I a dreamer? Maybe. But we all know, governments are voted out, priorities shift, laws are signed into being, and society changes. We can imagine a better world because we actually witness it sometimes in our kids’ lives. We don’t have to settle for shitty conditions. We can do better than this; in fact, sometimes, in our children’s classrooms, we already do.


A lot of hard questions. Wish the answers were easy. When your country is borrowing from the Chinese to pay for this war you have to wonder where the money is really going, and what our government’s priorities really are.

I’d say more but this has made me quite cynical.

— added by Someone Said on Saturday, December 1, 2007 at 6:57 pm

Holy Moly, Woman! You’ve been a blogging machine. I don’t know where to start as far as a reply. All I can think about is this question I have for you: if I feel like telling the ABA therapist that I think Chance should be able to flap if he wants, should I? I know they want to minimize it, but I don’t wanna stamp it out. It just seems wrong. Okay, sure does come down to money. I keep wondering when the day will come when I get the phone call…”Mrs. G? This is so and so from blah blah insurance company and your account is showing a balance that we can no longer pay due to eligibility requirements. Have you applied for SSI or any other type of insurance?” “Why yes, we were just denied SSI because we had more than 3,000 in savings/trust fund/retirement…” “Oh, well, Mrs. G., good luck finding more money…” It’s a bad feeling. I fear this day will come. I suppose it could be worse. I could be forced to veil my face and travel 7 miles on foot in a dust storm just to find a water source to carry jugs of it home.

— added by Anonymous on Saturday, December 1, 2007 at 11:46 pm

Couldn’t have said it better myself!
Thanks – glad I stopped by!

— added by Elissa on Sunday, December 2, 2007 at 4:44 am

Tina G –
You know what I’m going to say. You know what you know, and you should take a Chance on Chance and let him be who he is!!! ABA can work on a lot of other valuable things, maybe you can teach him “a time and a place for flapping” or “quieter flapping?” Good luck!

— added by Susan Senator on Sunday, December 2, 2007 at 7:28 am


Dream on..Fight on. I’m right there with you.


— added by Judith U. on Sunday, December 2, 2007 at 11:10 am