Jim de Jong didn’t see the oncoming jeep until it crested the hill right in front of him. By then, it was far too late.
The impact sent him airborne before violently depositing him on the pavement, snapping his femur and breaking nine ribs. Worst of all, Jim’s spine was fractured in two places, meaning the former college baseball player would spend the rest of his life in a wheelchair.
While the initial shock was overwhelming, Jim expresses gratitude for a support system that helped him see his new reality in an optimistic light.
“I woke up to a whole new world with all new challenges, but I was fortunate that I had a whole lot of great people around me at that time,” Jim reflects. “I give so much credit to the medical community first of all. They didn’t just operate from a medical mindset; they operated from a desire to make me as independent as possible.”
After six grueling months in the rehabilitation hospital, Jim was finally released. He refused to go to the nursing home like so many other people with spinal cord injuries were forced to at the time. Instead, Jim’s friends helped him convert a standard apartment into an accessible living space, one that afforded the comfort and freedom of movement he desired.
The physical and attitudinal barriers Jim inevitably encountered in his daily life only intensified his quest for equality, and disability rights quickly became his calling. As a resident of Chicago, Jim was mentored by one of the most knowledgeable and dynamic leaders on the disability landscape.
Marca Bristo, a former nurse who became paralyzed at age 23 after diving into Lake Michigan and breaking her neck, emerged as an unstoppable force for change. She went on to establish Access Living in Chicago and create a template for other Independent Living Centers across the nation.
“Working directly with Marca, who unfortunately is no longer with us, and the rest of the staff at Access Living enlightened me more than I could ever fully explain,” Jim acknowledges. “Anything more than a five-inch curb and you might as well have put up a ‘Keep Out’ sign for me, but I learned to broaden my perspective and always advocate beyond myself.”
Jim continued serving in advocacy positions throughout the 1980s, first with the Illinois Department of Rehabilitation Services and later for the Coalition of Citizens with Disabilities. He worked alongside Marca Bristo in the United States Congressional Task Force on the Rights and Empowerment of People with Disabilities, drafting and amending the proposed legislation that would eventually become the Americans with Disabilities Act.
Jim’s involvement in getting the ADA passed propelled him to a new opportunity with the Great Plains ADA Center at the University of Missouri in Columbia, where he became the organization’s first executive director. In this role, Jim oversaw the creation of the National ADA Symposium, the nation’s premiere conference focusing on ADA training and implementation.
“My dream with the National ADA Symposium was to bring people of all kinds together — people with disabilities, architects, engineers and policymakers all in one place so they could hopefully learn from one another, not only in the classroom but over their favorite beverage as well,” Jim describes. “I think we have a similar opportunity to interact and share experiences through the Universal Design Summit.”
Held annually in St. Louis, the Universal Design Summit is North America’s preeminent convention featuring global leaders in universal design. Architects, designers, engineers, realtors and web developers gather to learn about building physical and digital communities that are truly inclusive for everyone.
A member of the UDS 7 Steering Committee, Jim sees the upcoming event (May 12-14, 2021) as an opportunity for meaningful progress. “My hope is that the UD Summit will bring together a variety of people from diverse backgrounds — people with different types of disabilities as well as product manufacturers, engineers and policy makers — so we can start creating a more welcoming, universally accessible community for all,” Jim explains.
In his decades of advocating for disability rights, Jim has seen some significant improvements in terms of accessibility and universal design. He knows from firsthand experience that there’s a long way to go, however. Jim points to the lodging industry as an example of both the good and bad.
“I can park in an accessible spot and there’s a clear path to get inside the hotel. I can check in, go to the restaurant, to the bar, to the swimming pool,” Jim recounts. “I can get in my room, and the bathroom’s accessible with a roll-in shower. But when it’s time for bed, I can’t get in there; the beds are always too high.”
According to Jim, design flaws like this can be remedied through modern technology. But it’s often a dismissive attitude that stands in the way.
“We’ve been to the moon and back, regardless of what the conspiracy-oriented people might think, so I don’t understand why we can’t have an adjustable-height bed,” Jim laments. “It reminds me of when the Chicago Transit Authority told us they couldn’t put lifts on the buses because the hydraulics would freeze in winter. Yet, I would go to the airport and see all kinds of hydraulics working right through all the horrible snow they talked about.”
The common desire to challenge the status quo is what makes events like UDS 7 successful, and Jim expects an enthusiastic turnout in 2021.
“We’ve all experienced a certain level of intolerance or ignorance, but there’s something in our makeup that drives us to change that way of thinking. We’re going to persevere until people realize there’s a better way to build the world,” Jim concludes. “It’s important to remember that we all live on this planet together, so civility needs to be a Universal Design concept.”
