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

Rud Turnbull: Understanding this thing called intellectual disability. How do we conceptualize this concept, this construct called intellectual disability. Lest you think that that is not important, let me say to you that the American Association on Intellectual and Developmental Disabilities takes the position that conceptualizations of disabilities affect research, practice, and policy, and I could not agree more. I absolutely agree that conceptualizations do.

As I thought about how we think about intellectual disability, it has occurred to me that there are five models, five conceptualizations that we can use.

The first one has to do with human development. The human development model subsumes medical, educational, and psychological models. These are how a person develops.

The second model is what I call the public studies model, and it involves law and economics, social welfare, demographics. It has to do with the public context within which a person with a disability and the family exist, and that's my model. I'm a lawyer by training. I bring law to bear on these issues.

The third model is what I would call the cultural model, and it's concerned with stigma but it's also concerned with esteem, and those are opposites. And how do art, music, literature, poetry, history, biography depict this thing called intellectual disability? That's the question. And it's a question of how the culture responds to disability and, in fact, changing the culture, the way we think about intellectual disability, then enables us to change the law. And that, in turn, enables a person with a disability to have more fulsome human development. So I'm concerned about, then, human development, public studies, and cultural models.

The fourth model that I think is important is the technological model. What hard technologies and what soft technologies, human technologies, can we develop to support families and people with disabilities? And it's interesting and is ironic that war produces rehabilitation technologies, and the space program produces human technologies.

How do we bring technology into the lives of people with disabilities through a universal design of technology? That is the message of the That's the question of the Assistive Technology Act that I worked on in 1987, '88. And I think that the model of technology is a huge contributor.

And, finally, the fifth model for understanding is the theological or the ethical model. The theological model references a deity. The ethical model may reference a deity but it doesn't have to. It is concerned about secularly what is the right and the wrong thing to do.

So my concern about conceptualizing is that, as a field, we have been probably a little bit too focused on human development and law, not enough on the cultural model, somewhat more on the technological model, and we've had a hard time talking about theology and ethics. If we bring all five models together, I think we'll have a better way to conceptualizing disability and of responding to it.