Levenson+Module+6+post

Think back to your earlier study of the history of people with disabilities and the normalization movement. How do Self-Determination, self advocacy, and person centered planning relate to this history, and how has they changed lives for people with disabilities?

In the fields I have worked in we always worry a bit extra about the college student or camper who doesn't have even that one friend in their lives. The dark history and personal stories which inspired the normalization movement, people first, etc., took us well beyond this threshold of concern to people deprived of even the smallest opportunity to make a basic daily decision let alone a true friend. Even in a largely post-institutionalization nation (although, of course, not world, as we saw in an early module), too often adults with disabilities do not have lives filled with the casual acquaintances and encounters a typical adult has... the ones that fill up a day and fill up one's extroverted fuel tank, or just stave off daily boredom (which could, of course, lead to more significant negative psychological states). Sabine's father discussing her nightmare scenario as not having anything to do all day and the picture of Joseph's PATH exercise taking him from "Lonely" to "Making New Friends" pretty much say it all, but I'm also reminded of the time I spent working as an independent living skills counselor.

One of the people I worked with on budgeting and organization skills had a "friend" or two that would from time to time clearly take advantage of him by having him lend money they'd never return or the like. His family knew about this, and despite his brain injury he was able to understand the dynamics of the situation pretty well. But, there really weren't other friends. Incredibly, it was just not clear what the best thing was to do in that situation. And, of course, I was a temporary and limited resource in this area, so despite my feelings that those people should be cut off at least and probably investigated for criminal behavior, I was the classic fleeting professional in this person's life and really didn't have much chance to influence the decision-making. The times we were prompted in this module to think about ours or a typical adult's circle of friends vs. what a typical circle of friends might look like for a person with a disability... there were so few names to write for this person in that key layer of his circle.

But, as this module demonstrates, there are ways to go about building such connections in a person's life. The importance of personal connections is something I've believed in strongly as an educator for a very long time. My educational philosophy has always been strongly informed by Nel Noddings' ethic of care and Martin Buber's emphasis on one person to love you. This module really does a great job of highlighting the vital importance of personal connections for people with disabilities. The word love is used three different times by O'Brien and Lovett in their article on PCP. And when watching the videos of Sabine, I am struck by the loving care with which her family, friends, and service providers go about the various processes aimed at providing her a full and fulfilling life. They are smart, professional, and systematic; they are more importantly caring, loving, and thoughtful.

I can definitely see where that person I worked with would benefit from a quality PCP method of one kind or another. He did have family members in his life. He did have less fleeting professionals in his living setting (it was an assisted apartment-style housing program). Initial efforts might have provided more opportunity to make connections, and those connections in turn could have blossomed and provided other close connections like the neighbor/friend in Sabine's life. Perhaps in turn a greater number of caring team members might help provide an increasingly robust PCP process, and in turn a greater chance that a person or people in his support circle would learn to take the time and care to surface his goals and dreams and systematically go about the process of reaching them. It seems a key, though, is starting with at least one loving, knowledgeable person in the circle to get the ball rolling in the first place (whether that be the person with the disability who happens to be an effective self-advocate, a family member, a friend, or a caring professional).