Regular Lives for Families with Children with Disabilities
Interview with Kathie Snow
Produced by Minnesota Governor's Council on Developmental Disabilities
The 21st Century is Here
Kathie Snow: The 21st Century. We are here! When I was in Partners in 1990, one of the activities toward the end of the entire class, the end of the eight-month training, was to create a vision for the 21st Century. And now we're in the 21st Century. And so, of course, we always had the vision on out there. But the vision for the 21st Century, I think, is that we know that just about anything is possible. I mean it can be. But what's stopping us from making it happen?
The 21st Century, with all the technology that we have today, assistive technology is so important. I mean that would be one of the gifts of the 21st Century. When my son was little, I mean, he couldn't write with a pencil, but he could learn to type his name on a computer when he was four years old, and so that enabled him to do lessons and learn and write and read, he could read on the computer. And so assistive technology made a huge difference for him… and I mean the whole thing with the 21st Century of opportunities. And so you think about the 21st Century… I mean that was before the 21st Century came. But assistive technology, I mean that's one of the gifts of the 21st Century is assistive technology, and how it levels the playing field, and how it provides people with disabilities opportunities to learn and to grow and to have the same opportunities as other people have, the same relationships and experiences.
But Mark and I inadvertently, and, again, a lot of parents do this, we inadvertently retarded Benjamin's growth and development because we did not get him the assistive technology that he needed. If I had to do it over again, I would have had him in a power wheelchair when he was 18 to 24 months old so that he could explore and learn the way his sister did. But we were always discouraged by that from professionals who said, oh, no. He's got to learn how to walk. He's got to learn how to crawl. He's got to learn how to do this stuff. Instead of saying, no, get him the tools that he needs.
And so one thing about the assistive technology in the 21st Century to me, they're sort of intertwined. That there are so many ways that we can provide people with the tools that they need. And I just see assistive technology as tools. And too many people think of assistive technology as all about for those people with disabilities. It's like every one of us uses assistive technology. I mean, I'm not trying to do a commercial for Apple, it's just what I'm familiar with. So people have got an iPhone 4S, which is perfectly fine, and the iPhone 5 comes out. Oh, they've got to go get that one, you know? They've got to go get the latest thing.
People with disabilities are the most patient people in the world because we make them wait and wait and wait and wait. We make them wait to be included. We make them wait to be in a general ed classroom. We make them wait to get a job. We make them wait to go out. No, you can't go out and live on your own yet because you're still not ready. We make them wait for the assistive technology devices. No, because so and so won't pay for it or we got to get… one of silliest things is we're not going to let a person get this piece of technology because they haven't proven that they know how to use it. Well, how many of us go out and buy a brand new product that we don't know how to use? When most people buy a tablet, when they buy an iPhone, when they buy… they don't know how to use it. And you don't even get instruction books anymore. You have to go online and look for it or figure it out yourself.
And the story I like to share with people is to remember the bicycle. That whenever your parents brought you your first bicycle, did you know how to ride it? No, unless you borrowed your older brother and sister's, right? But they bought you a bicycle because they presumed you were competent. They presumed you would learn. And we have to do the same thing with people with disabilities, when you think about 21st Century and technology.
The technology is changing faster than we can keep up with it. I mean between brand new apps that come out and brand new products. And now we have these tablets and then we have smaller tablets. The other day I saw something about there's a new watch coming out that has all this, from Sony or somebody, that has all these… we'll be wearing a computer on our hand. We'll get the phones, we'll be talking like this or something. I don't know. Implant a chip or something. I'm not quite sure what.
But people with disabilities keep getting denied those things. And this is the 21st Century. This is the age of technology. And so when we think about people with disabilities not having stuff, well we can't get Medicaid to pay for it. Or we can't get insurance to pay for it. And this is where I'm going to go back to the whole thing about natural supports and generic services, then we have to look there.
Our communities are far richer and, sort of like mining our natural communities for all the riches that are there, and our communities have far more things, people, places, funding, money than the service system does. And so I think when we think about 21st Century, and, again, thinking about other topics that we've discussed about the service system, and how things are going to be cut. So when we think about technology as a big piece of the 21st Century, so is the whole idea of natural supports and generic services.
Benjamin would not be doing what he is today if he did not have the assistive technology devices. And, of course, with the Internet and 21st Century, not that any digital community is not the same as a real life community, but there are so many ways of connecting people. You think about 21st Century between technology and generic services and natural supports and all the options that are available to people about self-employment for people with disabilities. I mean people now working remotely, working out of their homes, between a computer and a tablet and all the kinds of things that people can do there, that people can be employed in jobs that maybe they could not have… the jobs weren't even available all those years ago. But I think that the sky's the limit.
Our son… Our home is very, very accessible, obviously, for him, but if I live there long enough, I'll need to use a wheelchair. And so the thought has always been that Benjamin will move out on his own one day and then, you know, Mark and I will get old and we'll live there or whatever. Well, Benjamin is thinking now, I really like this house, and we've kind of told him this so he has our permission to think this way, that he really likes our house. It suits him perfectly. It is accessible. The reality is a lot of places are not going be very accessible.
And so Benjamin is thinking about what kind of career could he have that he would work remotely and that Mark and I move out. So Benjamin takes over the house. It's got his lift system. It has what he needs. Mark and I get an apartment. We won't need that big house. Kids are grown and stuff. Whenever Benjamin would leave, we wouldn't need the big house. And he would need it more than we would.
And so that's what's possible in the 21st Century. I mean 50 years ago, that wouldn't have been possible. But it is possible today. And so I think that the sky is the limit, and we just have to, maybe not to use the old "think out of the box," we just need to expand our brains and to think why not? Why not? Instead of asking, you know, why me or why this or why..? Why not? Why can't we do this? I mean, that's a great question to ask and see what's possible in the 21st Century.