40 Big Ideas

Summary

Sometimes, family members, policymakers, and others want so much to protect people with disabilities that they take away important choices and chances for growth. Recognizing the right to be in a situation that has risks is a basic foundation of the self-determination movement and person-centered planning. These ideas provide the chance to build one’s identity, enhance a sense of agency, and learn and grow from successes and mistakes.

In his seminal 1972 article on the dignity of risk, Bob Perske noted that the purpose of services for people with intellectual and other developmental disabilities (IDD) had been to protect, comfort, keep safe, take care of, and watch. Sometimes, those impulses can be helpful. They can also lead to overprotection and emotional smothering, Perske noted, which endangers human dignity and prevents someone from “experiencing the normal taking of risks in life, which is necessary for normal human growth and development.” He wondered what had kept us from thinking of people with IDD as courageous.

Times were very different long ago, when we were used to many states running institutions and, later, group homes. I (James) entered the system when I was about to turn 17. I was in the 10th grade. They put me in a workshop program that I really did not understand, and let me visit a larger care facility with about 100 people and, later, two group homes. Self-advocacy groups had started in many countries and states, and through supported employment, even earlier than 1990, many people got community jobs. I was lucky to get a job in a clothes store, where I did almost everything in the store, except work the cash register (I was glad). They treated me very well, and I moved into a group home in 1987. I joined a singles group at my church, which welcomed me, and we did a lot together. I discovered self-advocacy. And one night in 1992, while watching the Super Bowl with my singles group, I decided I was going to move out of the group home to my own place so I could do more of what I wanted. People’s mindset changed, and they welcomed their neighbor.

To me (Bill), James’ story represents the dignity of risk in action. Like others, he fought for and was given new opportunities to work. He chose to become involved in self-advocacy and then made a leap out of the group home to his own place. He was part of a supportive young adults’ group, many of whom were likely moving out of family homes and starting their own lives. All of that, we would call “perfectly normal.” We can also see the foundations of the self-determination movement and person-centered planning, which provide the chance to build one’s identity, enhance a sense of agency, and learn and grow from both successes and mistakes.

Bob Perske brought the concept back from a trip to Scandinavia, where he saw support agencies inserting risk-taking experiences into many aspects of community life. He acknowledged that the real world is not always safe, secure, and predictable, and said that denying a person their fair share of risk experiences erects more barriers to living a full life. “Many…may, can, will, and should respond to risk with full human dignity and courage,” Perske said.

As James says and illustrates: So we have.