Regular Lives for Families with Children with Disabilities
Interview with Kathie Snow
Produced by Minnesota Governor's Council on Developmental Disabilities
Fallacy of Medical Model and Developmental Model
Kathie Snow: The thing that was frustrating for me and sometimes it's hard to see this when you're right in the middle of it. It's almost like, you know, we need to be able to step back or have a little time. But hardly any of the things that therapists did for my child. And, again, I'm not trying to bash therapists. It's not them as human beings. It's the system and it's for the medical model and the whole mentality, that hardly anything they did helped Benjamin live a successful life at that moment in time. So that they didn't help him be… They weren't doing things to help him be a successful four-year-old.
So that what did my daughter do when she was two? What can my son do when he was two so that he was living the same kind of life, or as a four-year-old. Almost everything that they work on – and this is true not just in therapy but in specialty preschools or in public schools even – is they're working on things that will supposedly help a person at some point in time. So that we look at this developmental age stuff and we look at sequential things and you have to do A, B, C, D and, in fact, you have to do A and B in that order, and we're not going to let you do D until you've mastered A, and B, and C.
Well, my son is never going to master some of those things. Benjamin doesn't write with a pencil, but he's working on his master's degree. We got him on a computer when he was four years old. If it were up to the occupational therapist and the kindergarten teacher, my son would still be in kindergarten to this day. So I tell people unless your child's going to grow up to be a calligrapher, then handwriting is not a very important skill. So that's why we have computers today. We had typewriters a long time ago and now we've got computers, we've got tablets. You can sign your thing on a whatever.
And so I think we have to rethink what is the purpose of therapy and also what are the unintended negative consequences. That we all have the best of intentions, but everything that we do, whether you're a special ed teacher or a parent or a therapist or a doctor, we all have the best of intentions, but we also know what they say about that. The road to hell is paved with good intentions.
And so we all have the best of intentions, but we have to stop and think whatever you're going to do with, for, or on behalf of a child or an adult with a disability, have the best of intentions, but what might be the unintended negative consequences. And none of us can tell the future. But we can use common sense and say, "Well, gee, if we do this to a person, then that might have this negative consequence and are we willing to take that risk?"
Because so many adults with disabilities have said to me, "Kathie, it's not my disability that gets in the way of me being successful, it's how I feel about myself." Because if you've been made to feel all your life that you are not good enough or that you're not okay because of your disability, that you can't walk or talk or feed yourself or all those functional skills. If you've been made to feel like you're not good enough. If you've been segregated in schools where you're made to feel like a second class citizen, then it's hard to go flip a switch when they're an adult and say, "Oh, now go ahead and live a successful life." So I think we have to question.
I mean, just about everything I do is about questioning conventional wisdom because the conventional wisdom of yesterday of putting people in institutions. I mean that was conventional wisdom, people had good intentions. That's what they did. That conventional wisdom was wrong. Not allowing children to go to public school until they passed the special ed law in 1975, that conventional wisdom was wrong.
So if we know that the majority of conventional wisdom about people with disabilities was wrong in the past, then shouldn't we presume or assume that a lot of today's conventional wisdom… Do we have to wait 50 years in the future for people to look back on what we did and say what were those people thinking? Why did they keep doing this to people with disabilities? So I hope that we can look at the past, use the past, use history, use our common sense, learn from the real experts who are people with disabilities, and says we have to question these things.