They fought back against abuse in institutions and forced sterilization. Moving north to escape Jim Crow laws, they tied disability rights to civil rights. Denied access to jobs and education, they persisted, and won critical victories.
Staff members and guests of the Institute on Community Integration recently gathered in St. Paul to hear stories about the remarkable lives, and sometimes brutal treatment, of people with disabilities who fought for their right to live and die with dignity in their communities.
Mel Duncan (pictured), a longtime activist who helped create the disability rights organization Advocating Change Together, shared stories from the 1970s, more than 15 years before the Americans with Disabilities Act prohibited discrimination in employment, transportation, public accommodations, and other areas of community life.
“In the fall of 1975, I was told there was someone who kept calling and wanting to know about the advocacy program, and would I go talk to him? So, I went up to JR Suddeth’s apartment on Plymouth Avenue to talk to him,” Duncan said. “Our grant was set up to organize a cadre of volunteers and we were to take cases regarding human rights, education, financial assistance, day programs and housing, but JR wanted to go deeper than that. He saw disability rights through the prism of Black civil rights. He was born in Alabama, and his family came to Minnesota to escape Jim Crow laws. We decided to use voter registration as a vehicle to talk to people about their civil rights.”
Duncan also shared stories about disability activists Ken Tice and Gloria Steinbring. Steinbring, who died in 2016, helped organize underpaid workers in sheltered workshops, played a key role in passing a state law limiting the use of restraints, and worked with the Remembering With Dignity project, which honored people with disabilities who lived and died in Minnesota institutions with proper grave markers.
“Getting ready for that talk really took me back to both the exhilaration and the pain that was concomitant,” Duncan said in a follow-up interview. “It was a time when people with disabilities were struggling with their humanity, and to be recognized. They didn’t want to adapt; it was time society adapted to them.”
Two of Duncan’s colleagues from the era, Tinka Kurth and Pat Helmbrecht, attended the event, with Duncan noting that while they are still living, all of the people with disabilities being honored in his presentation are now deceased. Disparities in the length of the lifespan of people with disabilities compared with those without disabilities prove that there is still much advocacy work to be done, Duncan said.
Telling the stories of Judith “Judy” Heumann and Ed Roberts, Dave Hancox shared one of his favorite quotes from Roberts, who created the first center for independent living and who led California’s department of vocational rehabilitation.
“He used to say that if you’re not living on the edge, you’re taking up too much space,” recalled Hancox, chief administrative officer for Accra, a provider of homecare services to people with disabilities. “Life is about taking risks, and you’re not going to influence change in disability policy or any cause if you’re on the sidelines making observational comments. If you’re not on the edge, it reduces the potential for substantive change. You’ve got to put yourself out there.”
Activist leaders Cliff Poetz, Irving Martin, Larry Lubbers, and Carol Ely, all now deceased, were also among the advocates whose stories were shared during the ICI event.
“In 2003, Cliff wrote an article for the Journal of Intellectual and Developmental Disabilities that conveyed three messages: We want to control our lives, we need to be paid for the work we do, and we need to stop being called mentally retarded,” said Charlie Lakin, a former director of ICI’s Rehabilitation Research and Training Center on Community Living. Lakin and Poetz were close friends and colleagues, and Lakin shared several stories from their work together over the years. During his life, Poetz received numerous awards and served on several disability organization boards.
He was passionate about pay equity for direct support professionals, who assist people with disabilities to live full lives in the community, Lakin said. Poetz also contributed a great deal of effort to Remembering With Dignity, a project to place proper gravestones to honor people who lived and died in state institutions between 1866 and 1997 and who were buried in anonymous graves. In 2010, as a result of this work, the state of Minnesota issued an official apology.
Another former ICI staff member, Beth Fondell, told the stories of activists Larry Lubbers and Carol Ely. Lubbers, who died in March at 61, was active in the fight to increase pay for people with disabilities who work in sheltered workshops, among other issues.
Ely was a longtime ICI colleague who died in 2016 at age 59. She was a core faculty member on the Minnesota Leadership Education in Neurodevelopmental and Related Disabilities (MNLEND) program, among other roles.
“The loss [of Lubbers] is still fresh for those of us he loved well, and that’s a very large clan,” Fondell said. “Both Carol and Larry were not just passionate advocates, they were compassionate, using their stories and circumstances to foster empathy, respect, gratitude, and connection with the people around them.”