Regular Lives for Families with Children with Disabilities
Interview with Kathie Snow
Produced by Minnesota Governor's Council on Developmental Disabilities
Know Your History
Kathie Snow: I'm ever hopeful. I, unfortunately, don't see as many changes as I would have thought we would have seen. I mean, when I started doing this, I never intended to become a public speaker, never intended to become a book author, never intended to host a website. But I did think, after learning history in Partners in Policymaking®, you see what history, you see what's happened. So you think we're on this forward trajectory, so we're making some progress, and we're going to keep going up. And then you realize that a lot of times we're going backwards, so that in some areas of our country you'll see, again, we're trying to get rid of segregation. But you will see, oftentimes, it's parents or in conjunction with a school system wanting a special school or special class just for kids with autism or some other condition.
We used to have institutions out in the country. Now you see parents of young adults who will buy a bunch of acres out in the… institutions around the country to get people away from the mainstream of American life. Now you'll see parents of a young person with a disability buying 40 acres to create a ranch and they become a provider, certified as a provider agency, and they move their child with a disability onto this ranch and then they get nine other people with autism or other disabilities to move on this ranch. And it's like, wait a minute.
We did this a long time ago and we had great big, brick buildings on beautiful grounds, and it was an institution. And now you're saying you're going to have this lovely ranch house in Wyoming or Pennsylvania or wherever and that's not going to be an institution? I mean, why are we taking people with disabilities out of their natural communities and being included, and segregating them? And yet people think that that's making progress.
And so for me… And there are pockets of progress. I mean, my children's school back in the'90s or late '80s, early '90s, that was an inclusive school. The principal has since retired, but it's still an inclusive school. There are pockets where people are doing good stuff that should probably be getting accolades and all kinds of awards and they just sort of go unnoticed, but they are doing great work.
I find that there are, unfortunately, this is probably true in any field, there's a lot of ego involved, that there were schools in our district, we are a very small district, but there were a couple of elementary schools that were not inclusive. But my children's were, and the people…teachers from the other schools would come over and they'd say, "Oh, we want our school to be like your kids' school," and they'd go back to their principals and they'd say, "Why don't we follow what they're doing and do what they're doing?" And the principals of the other schools would say, "Oh, no. No, no. We'll do inclusion when we're ready to do it, and we'll do it our way."
And so, it's like, this is about these people's egos. I mean they don't want to say, well somebody had a better idea than we did beforehand. And so I think the thing that's hard for me as a parent, and I, unfortunately, realized this years ago, is that a lot of times people that work in this field, as a parent early on I thought, oh they're working in this field because they care about me, about our family, and they care about our son. And then I realized, no, actually they don't, that there are turf issues. There's a lot of positioning, of who gets what, and who owns this arena and who owns this… And people with disabilities and families are sort of an afterthought.