Regular Lives for Families with Children with Disabilities
Interview with Kathie Snow
Produced by Minnesota Governor's Council on Developmental Disabilities
Getting in Shape Like Everyone Else
Kathie Snow: So if we think about our communities and we think about inclusion, one of the routes we need to take for lots of reasons are that we start as parents and family members and people with disabilities themselves, that we start thinking about using generic services and natural supports. And those are, by definition, the same things that are used by people who don't have disabilities. So that we don't, as a person, forget disabilities for a minute, I don't have a service system around me. If I need help, I get my husband to help me, or we need a little plumbing help, kitchen faucet acts up, I don't have a service system. People with disabilities have all these service systems that people go to. Not that they provide everybody's needs, but that's where we go first. We go to the service system.
Well, people that don't have disabilities don't have a service system. So I'll try to get my husband and I to fix the plumbing. Maybe we get our neighbor next door who maybe knows more about plumbing than we do. And if we still can't get it fixed, then maybe… so that's our natural support, you know, is our neighbor. And then, only then, will we call a professional plumber and pay him to come in and do our stuff. And that's the way most people do stuff.
Generic services are the things that people without disabilities use. And, again, we don't really call them that, but the easiest example is my friend Travis who lives in South Dakota
And Travis was in the audience at a class that I taught one year and I came back the next year to teach the class again. And it was a new class. And Travis has a diagnosis of spina bifida. He uses a manual wheelchair. And he explains it better than anything. And he said, "You know, Kathie," he said, "people who don't have disabilities," he said, "when they want to get their bodies in shape, they buy a home video at the time and exercise to the TV. Or they get a running buddy or they go join the YMCA or they go join a health club. That's what they do when they want to get their bodies in shape. But if you have a disability and you want to get your body in shape, you're supposed to go to therapy." He said, "Why can't people with disabilities do the same things that other people do?"
And the reality is that we can. And so a generic service would be, you know, again, a person with a disability, person without a disability needs exercise, we go to the health club. Why can't a child with a disability join the YMCA or go to a health club? We already have neighborhood preschools. We already have neighborhood inclusive childcare settings. So the generic service would be those as opposed to the segregated special ed preschool through the public school system, instead of therapy.
My son has cerebral palsy. He's real tight and so when he was little and he was getting all the occupational therapy that he had like no range of motion. Range of motion and he had no range of motion and so they would try to stretch his arms out. Well, Benjamin can't help this. I mean this is what cerebral palsy does. They go to pull his arm up, he just tightens up. He can't… relax, Benjamin, relax. I mean, they're trying to get his arm up to stretch it, he can't. He's not trying to do that, that's just what happens. And so he stopped going to therapy when he was six years old.
And again we said, well, we're going to make sure that Benjamin has what he needs in the most natural way possible. So when he was nine years old, he came from school one day and he said, "Mom, Mom." He had his power wheelchair by then. "Mom, Mom,̶"; he says. "I want to take karate. I want to take karate. What is karate?" He didn't even know what it was, but all of his nine-year-old, his fourth grade friends were signing up through the park and rec. The park and rec would send, we live in a little small town, and they'd send all the registration forms to school. And so I explained to him what it was. I said it was a self-defense class and we signed him up. And I kidded him, though, I said, "Benjamin", I said, "you don't really need to take a self-defense class," I said, "because you are driving a lethal weapon." In that power chair he can kill you in that chair, you know, he can just run over you and stuff.
And so he took karate lessons. You should have seen the range of motion. This is a kid who it looks like his arms are practically glued to his ribcage, and he gets in karate, and he's doing this and he's doing this, and he's doing this. Why? Because that's what the sensei is doing, that's what his peers are doing. Benjamin had far greater range of motion in karate class than he ever had in an occupational therapy session. Now some people say, well, the occupational therapist should have been better, she should have had him play a game that he would have to reach for something.
You know, the reality is our kids are not trained seals. I'm going a little bit off topic here, but I just have to tell this other story.
When my son was getting water therapy, this was before, before Benjamin elected to resign his therapy career, he was getting water therapy and he was in a great big water therapy… the physical therapist had a great big, one of those great big like wooden big redwood hot tub things, very, very deep. And so when she was in it, the water came up to here. And so Benjamin was six years old, again, this was right before stopped going to therapy altogether. And I tell these stories and other parents have similar stories. And they're like, "Oh, yeah, that, something like that happened with my kid. Why didn't I see it for the way it was?" I mean like we don't see what's right in front of our eyes sometimes.
And so I put Benjamin in his little swim trunks. He's a little scrawny six-year-old kid, cerebral palsy, put him in the hot tub with the therapist. I'll call her Mary. So Mary has these weighted rings. And the water therapy was to help Benjamin in all kinds of ways, right? And so she wants to drop the ring and him go to the bottom and get the ring and bring it back up.
And so she drops the ring and she goes, "Oh, Benjamin," she says, "I dropped the ring. Would you go get it for me?" He says, "Okay." So she helps him flip upside down because he couldn't do it by…and he goes to the bottom of the hot tub and he comes up, you know, sputtering and he's got the ring. "Oh, Benjamin, thank you, thank you. Good job, good job, good job." Okay. "Oops, I dropped the ring again. Benjamin, would you go get it for me?" "No." He said no. I thought he was going to say, "No, stupid." Like no, lady, if you dropped it the first time, I'll get it for you. But I'm not going down there again. You dropped it the second time, it's your fault. You go get it. Because you see how artificial that is? And children with disabilities are not stupid and they don't want to perform like trained seals.