Body
Robin Jones grew up in southern Wisconsin in a family with lots of relatives in the healthcare field, so no one was surprised when she signed up to be a candy striper at the local hospital and dreamed of becoming a nurse. Then one weekend in high school, she went to a movie called “The Other Side of the Mountain.” It was the story of 18-year-old U.S. Olympic skier Jill Kinmont, who broke her neck in a 1955 skiing accident, leaving her paralyzed from the neck down. The movie dramatized Kinmont’s long recovery, which was helped by physical and occupational therapists. “I was fascinated by what the therapists did with her,” Jones recalls. “They were helping her learn to eat, put on her makeup and go out in the community. They went on outings with her. When she couldn’t pull out her money in a store, they helped her interface with a clerk.”
Jones decided she wanted to be one of those therapists. A few years later, she received a degree in occupational therapy at a technical college in Madison, Wisconsin, and landed a job at the Rehabilitation Institute of Chicago (RIC), now known as the Shirley Ryan AbilityLab. Jones had achieved her dream but too often her therapy patients weren’t offered the kind of opportunities Kinmont had to live a full life. It was the 1980s, a decade before the Americans with Disabilities Act (ADA) would be passed, and many people with physical or mental disabilities ended up institutionalized and powerless. Jones went back to school to pursue a bachelor’s degree at Loyola University Chicago and then a master’s degree at DePaul University, both in public administration.
Then two of Jones’ former patients—an accountant and a college instructor—reached out to her with an idea. They were disappointed with the scant resources available in Chicago’s suburbs and wanted to launch a nonprofit that would advocate for accessible living and transportation options for people with disabilities. Jones helped them put together a business plan, lobby and fundraise. She left RIC in 1986 to become the director of Progress Center for Independent Living, a nonprofit in River Forest, Illinois, with the mission of helping people with disabilities live independently in their own homes. “I learned the power of people with disabilities’ voice if it was organized and if individuals were empowered with the right information,” Jones says.
Progress Center provided independent skills training that taught people how to take the bus, how to work with a personal-care attendant, and how to shop and manage their own money. The center also became another voice advocating for people with disabilities to be treated like valuable members of their communities.
I learned the power of people with disabilities’ voice if it was organized and if individuals were empowered with the right information
Robin Jones, MS
Body
After the ADA was passed in 1990, the University of Illinois at Chicago created the Great Lakes ADA Center, one of 10 federally funded centers around the country established to provide the disability community with technical assistance on implementing the law. The university had worked with Jones before on issues like providing wheelchairs to nursing home residents, and it recruited her to head the new center, which covers six Midwestern states. She started in 1991, hiring a staff with backgrounds in the disability field and training them on the ADA’s provisions. Almost immediately the center began receiving calls from educational institutions, businesses, government agencies and people with disabilities. “There was a hunger for information,” Jones says. “And back then we didn’t have social media or a website.” These days the Great Lakes Center averages 1,300 phone calls to its 800 number and trains 1,800 people either in person or online each month.
In the 29 years Jones has headed the center, she has witnessed a lot of progress for people with disabilities, much of it in terms of architecture, transportation options and societal acceptance. But there’s always more to do and new challenges, Jones says. There are new technologies that need to be made accessible and new companies that need to be educated about the rights of people with disabilities. There are also expanding definitions of who qualifies for assistance under the ADA, which includes people with mental health disorders, autism spectrum disorders, and episodic conditions such as multiple sclerosis, hepatitis C and chronic pain. There are always new workplace challenges that arise like the COVID-19 pandemic, which has generated a flood of inquiries about whether companies can require employees to wear masks and have their temperatures taken when they report to work.
“There’s still a great need for our services,” Jones says, “and there always will be.”