by David Morstad
Thirty nine years ago this week, I began a clinical internship at a state-run institution for people with what was known at the time as mental retardation. I learned from many fine and caring teachers, nurses, psychologists and other professionals. I also came to know many people with disabilities, of course, but those relationships were vastly different.
In 1976, the line was drawn. Call it personal boundary, professional distance, or anything else that seeks to maintain the institutional balance. The line between staff and resident was drawn and everyone understood it.
I was reminded of that institution when I revisited an autobiography written by one of its former residents, Cindy Bentley. Her story is remarkable. Born with a developmental disability due to her mother’s drug and alcohol use, Cindy’s turbulent childhood included a nonexistent family, shameful treatment in foster care and, ultimately, institutional placement. Encouraged to become active in Special Olympics, Cindy showed remarkable athletic ability and eventually competed on an international level. Armed with poise, natural ability, and a story to tell, she was eventually appointed a global spokesperson for Special Olympics International. In her days since the institution, Cindy has traveled the world and been a guest of the White House under two administrations – Clinton in 2000 and Bush in 2001. While she still bears the physical and emotional scars of abuse, both from the institution and from foster care, her advocacy is relentless. Today, she serves as the executive director of People First of Wisconsin where she continues to lead efforts toward employment, transportation and affordable housing for people with disabilities.
About a year ago, during a car ride together, Cindy and I had the chance to talk. I finally confided to her that we were at the same institution at the same time in the 1970s. We never met while we were there, but we remembered some of the same people, and had frequented some of the same buildings. That’s about where the shared experience ended, however. While I recalled less-than-perfect classrooms, she vividly recalled the nights and the fear of abuse that often came in the dark. When I spoke about old friends I had lost touch with long ago, she spoke of old friends now resting in graves marked only with numbers because there was no family to claim them as their own.
This story is significant, because an institution is more than a place. It is a mindset. As places, they are largely disappearing from the American landscape; in fact, they are a thing of the past in many states. As a mindset, however, they have the potential to live on wherever lines of “us” and “them” are drawn. They live on in community-based homes whenever compliance takes precedent over relationships; they live on in transition plans that talk more about tasks than about hopes and dreams; and they live on in houses of worship where people are more objects of mercy than subjects of community.
I am honored and grateful for the chance to know Cindy Bentley, for when it comes to understanding disability, this much I have learned: One of us is the expert, and one of us is not.