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

Rud Turnbull: While we were working in early 19 in this project – it would have been 1988, '89,'90 – we became involved with a group known as Parent to Parent. It's a program operated in various states, usually without any kind of governmental support, in which a parent who is first introduced to disability, a child born and has a disability, that parent is at a loss to know what to do, how to do anything. That parent is linked to, connected to a veteran parent, so you have a rookie and a veteran parent now talking with each other doing two things, providing each other information, how to, what to, when, that sort of thing. And second, emotional support.

We researched whether those parent to parent groups, were effective in a) providing emotional support, b) providing information, and c) creating advocacy. The research showed they are very effective. So some of the work that we, myself and my colleagues, were involved with demonstrated, then, the value of informal supports.

Then we focused on minority families and groups called the CPRC – Community Parent Resource Centers, because minority families are doubly challenged, triply challenged. They're challenged by race, often by poverty, often by their location, inner city or deep, deep rural, and by disability. And we able to create some supports for the those outfits, those entities, and I I think that was very important work.

Then in 2006, the Beach Center convened two symposia about family supports. I wrote the reports for those. Those led to some changes in state practices on family support. They led to a conference in 2011 in Wingspread, the so-called Wingspread Conference. And we began to set then a national platform of advocacy – 1991, 2006, 2011. It took a long time to establish Family Support as a worthwhile program.

It is so worthwhile that, most recently, I have been involved with the Department of Defense with one of its new offices in drafting and improving a policy for this office to create a service-wide – that's Army, Navy, Air Force, Marine – service-wide program of support for military families affected by disability and to show how those programs can be improved in their practice. The next step is to work with the private sector, not the government sector, but the private sector in through the employee assistance programs in supporting families in the private sector. And that's the kind of work that I've been doing in those three areas.

I will say this in conclusion. I'm an accidental advocate, as I said. I'm a student of the human condition in a policy context, as I said. I'm a father. No work that I could ever have imagined as a young man, as a student at law school, no work could have been any more satisfying than this work that I have done in the field of intellectual disability. It is beyond my imagination that I would have been able to do so much for so many, and I say so much because that's what other people say. All I've done is try to the best I can, to honor my son, Jay Turnbull, and people like him in order to make sure that they have the same kind of life that other people have.