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

Kathie Snow: Our hope is that our son, Benjamin, will go off on his own. We expect him to, just like his sister did. He's going to need a lot of support. So if I use him as an example, that he's going to need help in the morning, help in the evening, say getting up out of bed, you know, from bed to bed, and he has a lift system and stuff. But I think it's important that we don't hold people with disabilities hostage to sort of this, again, that disability double standard. That there are too many adults with disabilities that are held to a different standard than the people that provide the services to them, in the sense that they'll say, oh, they're in a group home and they cannot go out into, you know, independent living or supported living until they have reached certain thresholds. They've got to be able to cook out of a recipe book.

I mean I presented to people that provide support services to adults with disabilities and I'll ask them, "Are you guys still writing goals for people like before, Mary?"… I mean a group home, quote unquote, is not supposed to be the end all and be all. It's supposed to be a way station, on your way to greater independent living. And so people who work in a group home I'll say, "Are you writing goals for people like Mary has to, before we're going to let her move on, Mary has to write, Mary has to cook out of a recipe book five nights out of seven. And Mary has to make up her bed within 30 minutes of getting up. And Mary has to wash her dishes within 30 minutes of eating." And they say, "Oh, yeah, yeah. We're writing the goals."

And I say, "Do you guys do this? How many of you go home and open the Betty Crocker cookbook five nights out of seven," and I said, "make something from scratch?" And one woman says, "What's scratch?" I mean, well we know she doesn't do it. And so these were sometimes 23-year-old staff people working with a 50-year-old woman with a developmental disability that they're trying to get her to do stuff they themselves do not do.

So, okay, so it's like we cannot hold people with disabilities, we have low expectations for them and we hold them to higher standards than we achieve ourselves. And we put them in a situation, we put them in a box they cannot get out of. And so those of us… we've got to get people ready. You know what? When we left our homes, when I left my parents' home, did my parents think I was ready to leave home and go on my own? Probably not, but I did. I could cook great when I was in my mom's kitchen. And when I left home at age 18, 19, I moved 900 miles away and I remember calling my mother saying, Mom, I've got this big hunk of meat and this plastic… What do I do with it, mom? I didn't… And this was before cell phones, I mean, this is a long distance expensive phone call.

So the fact of the matter is that people who don't have disabilities, they buy things they don't know how to use. They leave home whether they're ready or not, or other people think they're ready. They buy a house before they're financially able to understand the ramifications of signing a 30-year contract. They have children before they're ready to have kids. I ask people, when you had your first child, were you ready? Probably not. When you had your third child, were you ready? I mean were you mature enough to have three children? No, but you do it anyway.

So people who don't have disabilities do stuff all the time like that. And we've got to make sure that we allow people with disabilities to do the same things. They're going to learn by doing. They're going to make mistakes. We have protected people with disabilities, you know, we want to protect them into helplessness. And so… and that actually starts when they're children and there's a name for it. It's called learned helplessness.

So we need to make sure that people with disabilities have the same opportunities to live where they want to live with whatever supports that they need. And we can talk in a second about more natural supports and generic services. But people with disabilities they're not criminals. They're… They shouldn't be convicted and sentenced to a life in some residential facility or some sheltered workshop that they never progress beyond that. We just hold them in like suspended animation.

And we think about people's homes. Again, I really don't like to use the term group home. I mean it's a house in a neighborhood, but most people that live there probably don't think of it as their home. And again, to get rid of the disability double standard that you would only call it a home if you had a key to the front door. I have a key to my front door. Actually, we have an electronic key pad, but the fact of the matter is that would you call it a home if you had an exit sign over your front door? Would you call it a home if half the people there, meaning staff, changed every 30 to 60 to 90 days? If there was no continuity?

So we have to… It's like what is it going to take for people to live in the homes that they want with whatever supports that they need just like people without disabilities do? But that means we've got to work on changing the system. Having said that, we don't have to wait for the system to change. There are many things that we can do on our own. And adults with disabilities ought to have the same opportunities that adults without disabilities have.