A Model of Self-Determination
John Smith (1959-2025).
By Charlie Lakin
John Smith was a unique and remarkable person. He leaves behind a legacy of influence in making our world a better place for persons with disabilities and in the process, a better place for all. John provided all who knew him a model of effectively dealing with life’s challenges, perhaps especially those of us who have never faced challenges as significant as John’s cerebral palsy and brain injury. John never relented in his dedication to assisting others with disabilities to become effective self-advocates, to improving community support and inclusion of persons with disabilities, to integrating the actual life experiences of persons with disabilities into the definition of the quality of the services they receive, and to being a good friend and colleague to others. John’s passion was infectious, and nobody working with John could avoid catching his spirit and passion for their work together.
I first met John when he worked at The Arc of the Greater Twin Cities. At The Arc, he served as a policy advocate and self-advocacy coordinator. That work was important to John’s career and vision, but when John came to the University of Minnesota, he found himself in an environment in which he could truly explore the breadth of his passions. During his long tenure at the University’s Institute on Community Integration, John became a beloved, productive, and valued colleague. I have always appreciated how John integrated his personal experiences and pleasures, his passion for making the world better, and his educational experiences into his work. John was an avid fan of outdoor activity. His undergraduate degree in therapeutic recreation led naturally to his participation in and formal evaluation of the programs of Wilderness Inquiry, a national leader in including persons with disabilities in outdoor adventures. John’s personal experience, advocacy work experience, and social work education helped him in successfully developing opportunities and capacities for persons with developmental disabilities to speak up and be heard about their own aspirations. In this area, with his friend and colleague, Brian Abery, John supported the growth and performance of People First Minnesota; and with his friend and colleague, Cliff Poetz, John traveled all over Minnesota to help develop local self-advocacy organizations. His commitment to making services and supports for people with disabilities responsive to their personal needs and desires, along with his advanced training in evaluation studies, came together to help him create quality assurance practices based on individual outcomes and experiences, rather than regulatory compliance. His work in training and evaluating the Region 10 person-centered quality assurance program reflected that passion. That program has had a lasting impact on quality assurance in Minnesota and other states. There are many such examples of how John integrated his experiences, passions, and continuing education to improve services and support for persons with disabilities.
One of John’s longest-lasting efforts in that regard was his leadership in developing and maintaining the Quality Mall, a web-based repository of descriptions of and links to exemplary programs and products in person-centered planning, service delivery, and quality assessment. The Quality Mall was part of a two-part program that included the website and an annual Reinventing Quality conference. I still remember our first trip to Chicago for the first conference. About seven or eight of us traveled in a large van. Coming back, John said to me, “If you need a break, I could drive for a while.” With initial uneasiness, I asked if he could manage it. I knew John could drive a car, but his CP was pretty significant. He said, “Sure. No problem,” so I pulled over and off we went. I knew if John said he could, then he could. I think many of us learned a lesson about trusting what people with disabilities say they can do, irrespective of appearances.
He was never one to seek any more support than he felt he truly needed. He was a wonderful model of independence, strength, self-determination and commitment to others. John left his mark on many people, both near and far, and he will be missed.