I've been wanting to comment for a while about an ongoing debate the head conductor at work and I had been having when I worked there. I call it the tension between the adaptive and the conductive.
I've spoken of conductive education here. Conductive education is radical independence. So radical that some people have been very outspoken critics of it, saying it imposes upon the child. Conductive education is preparing the child for the world, not the world for the child. It is facing a harsh reality that people with cp do face inadequate medical care to help prevent secondary disabilities, like arthritis, pressure sores, infections. It's a tough world out there, kid. Better learn to walk. Whether you want to or not. And, to quote George Lopez, "Why you crying?"
(It sounds cruel but no more cruel I guess than "It's a tough world kid. Better learn to read and write.")
And it has worked wonders with some kids I know.
It is so much like the philosophy behind applied behavior modification therapy (ABA) in autism. It's a tough world out there, kid. Better learn to speak and not flap your hands when you're excited.
These both come from the medical model of disability. We will fix what makes you not work like the rest of us.
Philosophically, this hurts. This thinking offends me to the core. I worked with I. on and off for two years. He's amazing. He's perfect. There is not a thing "wrong" with him.
But in reality... I will never forget picking up I. one day from conductive education, a year before I worked there. There he was, walking, pushing a ladder. He had help -- a aide sat behind him on a rolling stool and moved his feet. (Little did I know that backbreaking job would one day be mine!)
Beside, a friend's toddler, who I'd also never seen walk. Walking.
The world should be better. People with cp and other related conditions should have better opportunities, better health care, better technology for helping them speak for themselves.
But Jesus Christ, there were two beautiful kids who might never walk independently walking! In front of me!
It's hard to argue with that.
But I am sometimes frustrated with conductive ed's anti-adaptation philosophy. I tried to explain it once and then it became a joke. Whenever I said something that didn't make sense (which happens quite a lot when you are distracted, tired, and stressed), we call it part of my "sippy cup logic."
I am in the business (or hope to be) of assistive technology. What I do assists. In my field, people build wheelchairs to climb steps. In conductive education, we might work a child's whole life to get him or her to climb steps under his or her own power. (In the social model of disability, we want to know why the hell there isn't a ramp there, that having those steps is as wrong as any other segregation or de facto discrimination, but that's beside the point).
I used a sippy cup as an example. I. communicates unhappiness by crying. When I worked for him, he would cry and I would run and get him something to drink. That was usually it. What I really wanted, more than anything, was to find him a sippy cup he could hold and manipulate by himself. When he was thirsty, I hoped, he would be able to get his own water, affect his own world, even without me. That, I thought, would be an amazingly valuable skill. I work in this world and can get my own needs met.
There are no sippy cups in conductive ed. When I. is thirsty, he reaches for the cup, which is out of his grasp. (A lesson learned! He loves to play in all liquids!) I, or another aide, pulls the cup to him, hold his hands over the cup, support his elbows on the table, assist him in tipping it to his mouth. He is learning to drink from a real cup, not a sippy cup, or a specially adapted "assistive technology" sippy cup. There won't be sippy cups everywhere he goes in the world, but there will be cups.
I understand that logic.
Yet for now, there are sippy cups in his world and there might not always be aides to help him with regular cups.
It's the tension between teaching and accommodating.
I worry that while I. spends years learning to drink from a real cup with a person to help him, he will lose the valuable independence that learning to get his own drink from a sippy cup can give him. The conductors worry that years drinking out of a sippy cup will make him have no desire or motivation to drink from a regular cup.
Do you teach a child how to work an electric wheelchair him or herself so that the world can be explored?
Or do you keep pushing the child into conductive ed so that he or she will learn to walk with two or three aides helping?
There is a way to do both. The two can work together. I often felt frustrated and out of place in conductive ed because all the accommodations were human accommodations -- I guess the logic is that humans can be trained to fade the level of assistance, but a sipppy cup, or other assistive technology, can't do so.
But I see AT as a road to freedom. To control the thing you rely on, whether a wheelchair or sippy cup, seems more dignified to me than to always need an aide who is making the decision about how much help you need.
That is the essential question in AT -- how to make someone own their own assistive technology and control it themselves, therefore controlling their own lives.
Control your life through your sippy cup.
I will one day write a book with that title.