Thriving with disabilities: Perseverance key to living life to the fullest
As you can imagine, many of the people I work with on a day-to-day basis have a variety of physical, cognitive and mental challenges. Although I love my work — which I consider really more of a calling — sometimes it’s uplifting to look at how people with disabilities are finding ways to thrive.
Because of mainstreaming in education and inclusiveness in the workplace and because technology keeps improving all the time, we encounter more people with disabilities in our day-to-day activities. Not all disabilities are apparent — I’m thinking about medical dramas like “The Good Doctor” and “The Pitt,” in which doctors are on the autism spectrum and it’s their neurodivergence that helps them care for patients.
Franklin Roosevelt was elected president after he lost the use of his legs from polio. He and everyone around him worked hard to maintain the illusion that he could walk. That would never work today, and many members of Congress are open about their disabilities.
Illinois Sen. Tammy Duckworth is a double amputee from injuries sustained during the Iraq War. After Sen. John Fetterman of Pennsylvania suffered a stroke, some of his audio-processing ability became impaired. Rather than giving up his seat, he uses accommodations such as a live captioning app. “You’re not illiterate if you need glasses to read,” he said. “And that’s the same situation. This is a tool that allows you to participate fully.”
Newly elected California Rep. Lateefah Simon, born legally blind, advocates for public transportation. Former Rep. Jennifer Wexton of Virginia has a neurodegenerative disease that impairs her ability to speak, so while a member of Congress, she used augmentative and assistive communication (AAC) to allow her to address her colleagues.
Jeff Kinney, who grew up in the Chicago suburb of Western Springs, is working to encourage people with disabilities to live life fully through his blog, “Thrive With Paralysis” (thrivewithparalysis.com). Jeff, 53, who was born with spina bifida, works full time as an editor for U.S. News & World Report.
A graduate of Lyons Township High School, he recalls that classroom inclusion wasn’t really a thing when he was in school. Fortunately, he had something everyone needs, especially those with a disability: an advocate.
“The school system wanted to put me in special education, but I wouldn't have been academically challenged,” he recalls. “So my mom had to fight to get me into regular schools.”
After graduating with a degree in journalism from the University of Illinois, he earned a law degree, then combined the two fields as a journalist in the Washington, D.C. area.
Working at U.S. News, he used to go into the office five days a week. “But then COVID hit, and we all went remote,” he says. Although many of his colleagues are back in the office, Jeff persuaded his editors that he would be just as productive as a remote employee. The Americans with Disabilities Act requires employers to make reasonable accommodations for employees with disabilities.
He says he started his blog about a year and a half ago. “There are a lot of sites for disabilities, but my approach is more service journalism. Before I post something, I ask, ‘Will this help someone with a disability thrive more, to live life as fully as they can?’”
For now, it remains a hobby for his spare time. He says he is surprised at the feedback he receives from overseas readers in countries like Venezuela and India.
“My theory is that we have more resources in the U.S. for people with disabilities, but maybe people in some other countries don’t have as much available to them,” he says.
Blessed to be able to still walk with crutches, he enjoys outdoor activities and travel with his son, who’s 13, and his wife. Though he occasionally uses a wheelchair, he plans to stay on his two feet just as long as he can.
He has these words of encouragement for those with disabilities.
“I think the most important thing is perseverance and sticking with it,” he says. “Live your best life possible. It’s a lot of work, but the alternative is to give up and just sit around, which isn’t good for anybody.
“To the extent you can, get out there and be independent, engage in recreation, and find a job,” he adds. “Not everyone can do those things, but try to live up to whatever potential you have and live your best life. To me, that's what it means to thrive with paralysis.”
• Teri (Dreher) Frykenberg, a registered nurse, board-certified patient advocate, is the founder of www.NurseAdvocateEntrepreneur.com, which trains medical professionals to become successful private patient advocates. She is the author of “How to Be a Healthcare Advocate for Yourself & Your Loved Ones,” available on Amazon. Frykenberg offers a free phone consultation to readers. Contact her at Teri@NurseAdvocateEntrepreneur.com.