During the ILS Coalition conference, a consultant to the state legislature talked about the conflict between emphasizing choice and emphasizing safety. It's a real comfort to see someone get this and I wanted to write a little about the values in our system and how they interact.
I think there are three main moral values written into state law regarding support for people with developmental disabilities. These three values are unanimously supported (at least in public but I think with general sincerity as well) throughout our community. These are:
1. People with developmental disabilities should live lives and pursue goals of their own choosing,
2. People with developmental disabilities should be as safe, as healthy and as well as possible, and
3. People with developmental disabilities should be integrated into the community as substantially as every other member.
These three values sometimes align with one another perfectly. Other times, these two or more of these values conflict or compete. A cliche we use is "People should be free to choose, but you don't let them jump in front of a moving bus." The problem with the metaphor is that it's a metaphor. What is the threshold for free to choose. When is someone jumping in front of a bus (other than when they're jumping in front of a bus.) I know people who work in this field who think eating poorly calls for aggressive intervention. Do you or do you not help someone with a seizure disorder join a hang-gliding club?
Integration is often even trickier. During an intake I once suggested to a new, young client that we could help her join a church choir because she was religious, isolated and liked music. Her answer, and I've heard it more than this once was "No. I don't like normal people, they're mean to me." This is a real conflict. Those of us who care acutely for people with disabilities want to live in a society where cerebral palsy, cognitive challenges, and other disabilities are traits not stigmas, like green eyes or a really bizaare sense of humor. Still, we can't promise people with disabilities that if they participate in the greater community that they won't be insulted, victimized or alientated. If we're honest, we can almost promise that they will be. We no longer question people with other minority identities who prefer the company of those they feel most like.
When we talk about these conflicts, someone always suggests a solution (a church choir where the music director has a child with disabilities.) I believe the solution is besides the point. In working with challenged people we've chosen conflict. The separate character of our system's participants is largely defined by balancing conflicts among our values. Some programs are, when the conflicts grow acute, highly risk-averse others are ultimately zealous about client choice while some purr about integration. The presence of different solutions to the same challenge among available supports is part of the genius of this system and as long as people with disabilities can find support that reflects there own values, our system works.