Regular Lives for Families with Children with Disabilities: Interview with Kathie Snow

Kathie Snow: What works are people with disabilities and their families being the leaders and everybody else being the followers or being the supporters. That, what works is people with disabilities being treated like they don't have disabilities. And I'm not saying that in the sense that we don't help them. I mean, of course my son uses a lot of assistance. I mean I need a lot of help now. I'll acquire a disability at some point probably if I live long enough and I'm going to need assistance. But it's about making sure that people with disabilities… I mean what works is that they have the same opportunities, that they have the same opportunities for ordinary relationships and experiences that constitute a good quality of life.

I mean quality of life is not about functional skills, because, again, you don't… that's the medical model and, again, we think we have to walk or talk or feed yourself. No you don't. It's like you don't have to walk to have a good life, but you might need a power wheelchair. You don't have to talk to have a good life, but you might need a communication device. So it's about making sure that people with disabilities have the same opportunities for those ordinary but precious relationships and experiences that people without disabilities take for granted. I mean you and I take those for granted all the time, that we're going to have these. People with disabilities don't.

So what works is treating people with disabilities, as, again, are… they are our equals. They are our brothers and sisters. They are our friends and neighbors. They… people with disabilities make up the largest minority group, if we counted them that way, the largest minority group in the country. It is the most inclusive. It's the one that anybody can join at any time, as Ed Roberts used to say. That's not true of other minority groups.

I mean I could never join the minority group of, you know, African American people, I mean I'm not African American. There's… a male could not join the female group. The point is, you can't join other groups. You either are or you're not. That's not true with people with disabilities. They're the only group that anybody can join at any time. And people with disabilities, you know, make up the most diverse minority group. It's people of both genders, all ages, any sexual orientation, every socioeconomic group.

And so what works is when we realize that people with disabilities are more like people without disabilities than different. When we realize that they're our neighbors, that they're our cousins. When we realize that there are young people today who are going to become parents of children with disabilities, and they don't know it. I mean I never thought that I'd become a parent of a child with a disability. When my daughter was nine years old and her brother was seven, she said to me one day – we were driving in the car, she says, "You know, Mommy, when I grow up and I have kids, if I have a baby with a disability, it's going to be no big deal." And that's where we have to get to that point.

So I'm often invited to present to college classes or university classes. And it will be like a disabilities studies class or something like that, or it could be different. And in the class are college students who are studying to become special ed teachers. Or college students, I mean multidisciplinary class, college students who are studying to become physical therapists or occupational therapists. And they're there and they're 20, 19, 21 years old, and I'm there as the so-called expert. You talk to them about disability issues. And they're there in the class as it relates to their future discipline. They're there, what their career's going to be.

And I say to them, say "10% of all children today have a disability diagnosis." And I look at the class and I say, "So 10% of you are going to become parents of children with disabilities. So you're in this class to learn because you're going to become a PT, an OT, or a speech pathologist, or you're going to become a special ed teacher or general ed teacher. But some of you are going to become…" Well, at that point, their eyes just get big as saucers because they think, I'm going to go into this field to help those little children. And it's like, no, some of you are going to become parents of children. And so what kind of life do you want for them?

And so we think about what works is treating people like people. What doesn't work is continuing down the path that we've done. And, again, we don't have big institutions so much. We still have some left. But we are still institutionalizing people in the sense of putting them in segregated settings and treating them like they're a second class citizen and not giving them the opportunities that…to be a nine-year-old.

We've got to say, oh, no, he's more like a two-year-old so we're going to treat him like a two-year-old. You have a 35-year-old. Well, no, this person can't do this kind of stuff. So what kind of society do we want? And the easiest question that I always like to ask people is, what do you want when it's you? Not if, but when.

What do you want when it's you? When you acquire a disability through an accident, illness, or the aging process, should we put you somewhere else to be with people like yourself? Should we treat you like a second class citizen? Should we talk about you by your diagnosis? Should we limit your opportunities? Or, when you acquire a disability, do you want to just live the same kind of life you're living now and get whatever accommodation and supports that you might need to live the life that you want to live? And, really, it can become that simple. You just say, what do you want when it's you? Again, not if, but when.