Unbounded Spirit: Remembering John G. Smith

John G. Smith (1959-2025).

Friends, family, and colleagues gathered on December 20 in Minneapolis to celebrate the life of John Good Smith, an award-winning disability advocate and a research specialist at the University of Minnesota’s Institute on Community Integration for more than 30 years. He died on December 4 at age 66.

Smith’s work focused on translating complex research and policy into clear, accessible information that helps people with intellectual and other developmental disabilities take greater control of their lives. His contributions spanned knowledge translation, program evaluation, self-determination research, and the development of tools and training for direct support professionals. He played a key role in the creation and evaluation of several major initiatives, including the Region 10 Quality Assurance project. He also helped build Self-Advocacy Online into a nationally recognized resource.

“Those who knew John will remember a man who approached challenges with grit and creativity, who lifted others through encouragement and laughter, and who never lost sight of the dignity and worth of every person,” ICI Director Amy Hewitt shared in a note to colleagues. “His legacy endures in the many colleagues he mentored, the self-advocates he championed, and the countless people whose lives were made better because of his work.”

The celebration of life on December 20 included a visitation and service at Spirit Catholic Community in Minneapolis. The service was livestreamed on YouTube – https://www.youtube.com/live/iV31tSa6D6M .

“John was an excellent researcher and evaluator. He kept us all grounded in the values that drive ICI,” Hewitt said. “Self-determination was at the forefront of his career, and he lived as one of the most self-determined people I’ve ever known. He lived as he chose to live, and through his mentoring of self-advocates, college students, scouts, community members, and colleagues, he taught others about the right that people with disabilities have to live self-determined lives.”

Smith’s life-long commitment to disability rights was recognized with the Access Press Charlie Smith Award and the Rose and Jay Phillips Award – honors that reflected both his professional impact and the deep respect he earned within the community. Before joining the University, John spent many years providing therapeutic and recreation support, leading self-advocacy efforts, and advancing community inclusion through his work with The Arc of Hennepin County (now The Arc Minnesota) and People First Minnesota.

“John Smith was a unique and remarkable person,” said Charlie Lakin, the former director of the Institute’s Research and Training Center on Community Living. “John provided all who knew him a model of effectively dealing with life’s challenges.” (See Lakin’s full comments here. )

Other colleagues, friends, and family members shared stories of Smith’s tenacity, intelligence, and sharp wit through his own journey as someone with cerebral palsy, along with remembrances of how he lifted those around him. In many ways, they said, Smith was the soul of ICI, having influenced its work throughout much of its history.

“While his journey included significant physical challenges, his spirit was utterly unbounded,” Erin Simunds posted on social media, praising Smith’s work ethic. “He taught me more about resilience, perspective, and genuine human connection than anyone I know. He had a gift for asking the perfect question that would cut through complexity and force you to think deeper about the work and life itself. He made me a better professional and, frankly, a better person.” Sue Swenson, president of Inclusion International and a parent of a child with disabilities, met Smith decades ago when they both were enrolled in the Partners in Policymaking program.

“I was a young mom, struggling with what to make of my 7-year-old son’s life. John was a young man who showed me that a sense of humor was probably going to be the key, and he was definitely right. A sense of humor doesn’t really help with accessibility, but it sure helps to convince others that accessibility matters. During ADA sign-ons, a very powerful Minnesota businessman said, ‘Why do I need wheelchair access when no wheelchair users ever come to my business?’ Then he turned five shades of red when John’s expression—maybe the way he raised his eyebrow—said ‘Ya think?’

Mary Kay Kennedy, a longtime disability rights advocate, first met Smith when he was working for The Arc. She recalled his humor and creativity, including a time when he returned to a state self-advocacy conference as a wheelchair user after a spinal cord injury about two decades ago, disguised in a long wig and beard for comic effect.

“He showed, again and again, that building community is both serious work and shared joy, and that everyone belongs in the circle he helped create,” Kennedy said. “John understood that rights only matter when people know about them and feel supported to use them. His life’s work was helping people with disabilities move from having rights on paper to having real power, dignity, and inclusion in their everyday lives. His legacy lives in the expectations he helped people form: that we all deserve inclusion, respect, and a real voice in our own lives.”

He proved his tenacity early in life, growing up in Mankato. When he was in primary school, he “left home” one afternoon, setting up camp in the front yard after a dispute with his parents, his sister Candace shared. Dinnertime came and went, but John settled in for the night. A sudden storm later drove him back into the house, but his hours-long stand, and their parents’ willingness to let him take it, made a lasting impression.

Smith went on to earn the rank of Eagle Scout, a bachelor’s degree in therapeutic recreation at Mankato State University, and a master’s degree in social work at the University of Minnesota.

At the Institute, among his other roles, Smith worked with Katrina Simons on projects including the organization’s Self-Advocate Advisory Committee, a group of people with disabilities who review materials for accessibility.

“John made complex information easier to understand, which improved people’s access to choice and led to improved quality of life for people with intellectual and other developmental disabilities,” Simons said. “He helped make decision-making and true belonging possible for people who it otherwise would not have been.”

ICI’s Brian Abery hired Smith to coordinate a self-determination grant, focusing on the environmental characteristics that impact a person’s ability to develop self-determination.

“He had a degree and background in therapeutic recreation, and he walked into the office and said, ‘I want to support people’s self-determination.’ That was the first thing he said. He didn’t know it, but he had the job right then.”

Bringing the same devotion to his church life, he was an active member of the Spirit Catholic Community, where he freely gave his time, energy, and humor, enriching the congregation with his compassion and quiet leadership.

Delivering a 2020 homily, he shared how his faith gave him the courage to take risks, a critical component of self-determination, one of the tenets of disability advocacy.

“Having faith means moving the word and wisdom of the community from my head into my heart, in actions that say ‘Love. Forgive. Advocate. Vote. Show up.’

“Taking risks has been a very important part of my life,” Smith said. “Some have been small, like ordering something I have never heard of at a restaurant. Others have been more daunting, like going on a dogsledding trip in the Boundary Waters in below-zero weather. Most have led to great experiences and outcomes that I will always carry with me.”

Marilaurice Hemlock, who worked on committees and worshipped with Smith, said his prayers were heartfelt and full of compassion for others.

“The gift of his wisdom, presence, humor, and patience changed the culture at St. Stephen's and Spirit Catholic Community,” Hemlock said. “We can almost hear God's commendation, ‘Well done, good and faithful servant.’"

Beyond his church involvement, Smith was an avid sports fan and was a season ticketholder for the Gopher football and men’s basketball teams.

“John was the consummate optimist,” as a fan, said Mark Olson, an ICI colleague. Smith also loved baseball, Olson said, and often shared tidbits of knowledge about players that very few others knew.

Above all, Smith once said in an interview, he wanted to be “the guy on the top of the mountain, who got there because he worked his ass off.”

In a 2020 article in Connect magazine that marked ICI’s 35th anniversary, he shared the reason for that passion.

“ICI was about research and showing what was possible,” he said of his life’s work. “I love and continue to love that marriage of science and advocacy.”