The Convergence of Disability Law and Policy: Core Concepts, Ethical Communities, and the Notion of Dignity

Rud Turnbull: So I'm concerned about, then, how confrontations in relationships become means for personhood, for empathy, and for compassion. A compassion alone is not going to be sufficient. What is going to be sufficient is the notion of dignity. That was one of the ethical principles that I identified after doing all this research on the Supreme Court decisions and Congress, acts of Congress, in 2001, that dignity is an underlying ethical construct as we write law. Dignity means esteeming. It means attributing inherent value to a person. It means, words that I wrote in 1978, less worthy does not excuse me, less able does not mean less worthy.

And I want to get at this business of dignity. In practice, how do practitioners dignify or not? How does policy dignify or not? Because, and here's the sixth element, when we think about personhood and empathy and compassion and dignity, we begin to create ethical communities. And my concern is how we can use the affective parts of ourselves in conjunction with the mechanics and the interventions and the technologies, and in conjunction with policy to create an ethical community. That is to say, a community in which people with disabilities are safe, are treated properly. And I will give you one story about how this can happen.

My son Jay had intellectual disability, autism, and rapid cycling bipolar condition. We would take Jay out to see Ann's father, Jay's grandfather, at the retirement community where the grandfather was living, and every we did it every Sunday. And every Sunday, the same receptionist was there to meet Jay. And Jay would greet the receptionist and say hello, and Jay and the receptionist got to know each other somewhat over a period of several months.

One day, not in the retirement community but in the community at large, Jay is grabbed by a very deep depression. He's been in bed for two or three days. He cannot bring himself even to eat. And as he comes out of this deep, deep depression, he realizes one morning that he does not belong in his bed at home but he belongs at the office at the University of Kansas where he works.

Now his caregiver had stepped outside for a moment or two and, during that period of absence, Jay gets out of his bed and in his pajamas, still in a deep depression, walks to a main street, four lane highway and be and starts walking across it. And cars stop and they swerve. But one car stopped and went to the curb, and guess who was driving the car? The receptionist from my grand from his Jay's grandfather's retirement home. And she said, "Jay, what are you doing?" And he said, "Work." "Jay, where do you work?" He said, "Hayworth Hall," which is one of the buildings of the University of Kansas. And she knew where it was and she called us, and she brought Jay from out of the middle of that street to work. Now that is an example of an ethical community at work, a place where Jay is safe because he has developed relationships, because he has been integrated and dignified, and because there's been an empathy and because there has been compassion.

So this talk about affective parts of our lives, about positive psychology, is not just an academic curiosity. It can produce results for people with disabilities and for their families. Those are the issues that I'm curious about today, 2014. Thank you for the chance to explain them to you. Thank you.