Chapter 6: Self-determination

06:20:39:25 - 06:21:33:26 Lisa: Did that experience lay the groundwork for self-determination?

Nancy: Laid the groundwork for everything. I mean, once you give - you reverse or invert the power, it's inverted, and so, certainly I think about the closure of Western Center. Families interviewed four and five providers, they picked the providers, and went out and picked the house. And so, that's the essence of self-determination. I control what happens to me. I control who touches me. I control who supports me. I control where I go. All those words, self-determination, all that stuff all makes sense, 'cause people now had some experience with acting on it. But, and what we learned is that it's incredibly inconvenient for people in power. Too bad.

06:21:54:04 - 06:23:22:08 Lisa: Wanted to go back to the concept of self-determination. There certainly was a pilot project in Pennsylvania supported by the Robert Wood Johnson foundation. You've talked a lot about what self-determination means and what control means for people with disabilities. I'm recalling a conversation I had with Debbie Robinson about the issue of self-determination and Debbie said in hindsight she wished she had approached self-determination differently because in sharing that philosophy with other self-advocates, she said she was taking to folks who hadn't been allowed in their lives, because of their maybe, because they lived in institutions or because they had been perhaps not allowed freedoms in their day-to-day lives, people couldn't make basic choices like what they'd have for breakfast. Or she would take folks to conferences and there would be a buffet and people would be afraid to take food from the table, not sure if they were entitled or allowed. She said some people were having difficulty making the most basic choices in life. How do you tell them they can control their budget and make choices about their services and providers? And I don't know what experience you had or what your thought were about that, having been in state government when the self-determination pilot project was put in place.

06:23:33:08 - 06:26:56:17 Nancy: At one time when people would ask me to come and speak and talk, and talk about self-determination I would tell them a story about my sister-in-law and her little girl. And the story was that my sister-in-law took her two year old little girl to the doctors for a physical and my sister was a really good mother and she really listens and - but they live in a farm and they're a great distance from the doctors. It's twenty miles. And she took Ellie to the office and the doctor went to undress her and Ellie said no. And really didn't want the doctor to look at her. And I'm always aligned with my sister-in-law, but in that case I know I would have said, 'Ellie, I drove twenty miles, we know the doctor, Mommy's here. You got to take your shirt off, the doctor's gonna look at you." But my sister-in-law didn't. She said, "Ellie that's okay. If you don't want the doctor to look at you, that's okay. We'll leave, and when you think it's okay we can come back." And what I tell everybody is what did Ellie learn? She learned, 'I'm in charge of my body, and nobody can look at it without me saying it's okay'. She really learned that lesson that day. And if you met Ellie today at 15, she's the same girl and we don't have to worry about Ellie's victimization or what Ellie's gonna do. And so when I think about self-determination I'm far more interested in it at the level of that intimacy. Self-determination on a daily basis that's far more important than, did you get to pick the house you want to live in? That's important but what's the point if you don't have the confidence and self-assurance of saying 'you can't touch me', or 'I'm not gonna eat that because I don't like it', or 'I'm wearing jeans today because that's what I want to wear'. And I think that it starts with families and it starts when children are young and it's a particularly challenging skill to build in children with disabilities because their life experience is one of dependency. I mean, these are the kids who get made fun of, who are denigrated, who are putdown. So they already are one step behind in building the sense of self-esteem and self-control and then we teach them compliance, because we punish them for not being compliant, and that's all I think very, very problematic. And it's, you know, we have a terrifically high rate of abuse, including sexual abuse, among people with cognitive disabilities. Astronomically high. Because they don't learn to say no. And so I think of it in those terms far more than I think about controlling a budget and hiring and firing staff. That will come very naturally if people have personal power over their own lives. Debbie's right. Debbie's right in that its hard to talk to people about good choices when they don't get to make little choices.

Lisa: Little choices that maybe aren't so little.

Nancy: That's right. They're foundational.