Branch Out with a Toaster Oven From Maine to Arizona: The Jill Wiele Story
Not long after Jill wiele graduated from the University of Iowa, she was invited to move to Maine. Yes, Maine; where the summers are muggy, humid and downright miserable, especially if you have no air conditioner. Winter can be charming too, if you’re a polar bear. The average daytime temperature in the winter is 48 degrees. Fifty-eight inches of snow is pretty much a sure bet. Wiele is quick to sing the praises of Maine and says it’s a beautiful state, just not the best place for someone to live who uses a wheelchair.Had Wiele ever been to Maine before she made her move? No. In fact, the only time she’d ventured far from home, prior to moving to Maine, was when she flew to Washington, D.C., with her mom to attend an educational conference. Not only was it her first plane ride, but it was also her first time to fly with her electric wheelchair. She was genuinely excited about attending the conference, but was actually using the trip as a test flight for her move to Maine.
Just prior to her departure for America’s northern most state, Wiele learned she and her friends would not be flying. So, with her wheelchair securely fastened on a trailer hitched to the back of her friend’s car, Wiele and crew set out for Maine, sight unseen.
“After I graduated, I thought about getting my masters, but wasn’t sure it would really help advance my career. I had this lingering fear that if I did go back to school, I’d get stuck and not branch out; so I moved to Maine,” Wiele said.
By many standards, moving more than 1,400 miles away from home right after graduating college certainly constitutes “branching out.” It was particularly bold for someone who had literally grown up in a wheelchair. Even for an able-bodied person moving somewhere you knew no one, except your travel mates, takes a lot of courage and an innate zest for life, but for Wiele it was much more. It was one more opportunity to prove to family and friends she could make it in this world all alone if necessary.
“It seems like ever since I was born I’ve had to prove people wrong. Because I was born with cerebral palsy, and the prognosis was not good, my parents were told that I should be put in an institution,” Wiele said. “The experts said I’d never be able to talk, and I did. I’d never be able to sit-up or feed myself, and I did. I kept doing things I wasn’t supposed to do.”
In 1968 when Wiele was born, little was known about cerebral palsy compared to today. With a noted pause in her voice, Wiele indicated her parents did the best they could with knowledge available at the time. By accident, one of the more positive things Wiele’s parents did for her was to treat her much the same as her three siblings. The lack of coddling forced Wiele to fend for herself as much as physically possible. It prepared her for a world that could be bitterly cruel at times, but also incredibly rewarding, especially for a young girl who was determined to defy the odds customarily associated with cerebral palsy.
Wiele began her schooling in a segregated environment composed only of kids with a variety of disabilities. It wasn’t until her family moved to Iowa and she was “mainstreamed” that the environment changed radically. Now, she was in a school where she was the only kid in a wheelchair. It was a challenging circumstance for which Wiele was not fully prepared. For the first time in her life, Wiele was faced with the fact that she was very different than the other kids. She
The cruelty of young children can often be more piercing than that of an adult. Such was the case for Wiele. From fourth grade to her senior year in high school, Wiele endured a barrage of teasing, taunting and juvenile jokes leaving her with few positive memories of her school days and few friends. Fortunately, her college years were much different. After attending a junior college to, as Wiele says, “get my GPA up,” she applied to attend the University of Iowa. She was accepted, but there was one catch – Wiele had not told her parents she had applied.
“I can remember when I got the letter that said I was accepted to the University of Iowa. I was really excited and my parents were shocked,” Wiele said.
Not only was the University of Iowa relatively close to home, but Wiele knew it to be very wheelchair-friendly. It also had a respected social work program, Wiele’s major, and there was a childhood connection to the university as well. Fond memories of attending what was called “Hospital School” at the University of Iowa when Wiele was a child were easily recalled.
At “Hospital School,” kids with disabilities learned basic life skills. It was around the same time Wiele attended “Hospital School” that she had surgery at the hospital affiliated with the university. As fate would have it, a college professor was the doctor who performed one of her surgeries years earlier.
With a profound sense of joy Wiele said, “He remembered me.” The physician’s memory of Wiele thrilled her immensely. It was
evidence someone cared.
One of Wiele’s college dreams was to join a sorority, but that was not to be. None of the sorority houses were wheelchair accessible. Undaunted, Wiele joined a co-ed service fraternity. It was a perfect alternative, especially since there was no fraternity house and no challenges associated with a wheelchair. Because the fraternity was service-oriented, it provided Wiele with opportunities to participate in fundraisers and awareness programs that benefitted a variety of worthy causes. One such event was a Rock-a-thon. The goal was to raise money and awareness for the plight of the elderly. All Wiele had to do was sit in a rocking chair and rock and rock and rock for hours and hours.
“Wow, a Rock-a-thon was perfect for me. I could sit there and rock. I don’t remember how long I rocked, but it was a long time. It was fun and for a good cause,” Wiele said. After graduation in 1991, Wiele made her bold move to Maine.However, after realizing it wasn’t the best place for a girl in a wheelchair to call home, she made another bold move to Arizona where there was no snow, but lots of sun and heat. Again, sight unseen, Wiele used her Maine strategy and carefully plotted her move to Phoenix. After saving a little money, Wiele called a travel agent who graciously helped her find ADA compliant living quarters in Phoenix. The travel agent also made sure Wiele had access to an airport shuttle that could accommodate a wheelchair. So, for several weeks after arriving in Phoenix, Wiele called the Roadway Inn “home.”
“A funny thing about flying to Arizona is somehow they let me board the plane with a toaster oven. I cooked with that thing for
quite while in the hotel room. I don’t know how or why they let me take that toaster oven on the plane, it sure was a lifesaver,”
Next on Wiele’s agenda was to get a job, which was not easy. Keeping a job was even harder. Even though she made sure her employer clearly understood her limitations, ultimately her co-workers would complain, and tension was sure to follow.
“Oh, the supervisor would start out by telling me how good of an employee I was, but would finish with, ‘This just isn’t a good fit.’ I had an idea who had complained. While I knew I had rights under the ADA, I wanted to avoid the possibility of a hostile workplace. Ironically, as I was leaving, the company began remodeling in order to become more accessible,” Wiele said.
In the early 1990s when Wiele experienced her employment struggles, American with Disabilities Act workplace compliance laws had yet to make a significant difference in the lives of folks with disabilities. Times have changed as well as Wiele’s willingness to defend herself. Today, Wiele does not hesitate to push the cause for those with disabilities.
Her unwavering tenacity is one of the primary reasons she is the proud owner of a new power wheelchair with a tilt system. When she submitted a request for her new wheelchair, the insurance company immediately denied her request, even though she met three of the five criteria as prescribed by her insurance company. Without proper review of Wiele’s follow-up submittals, the insurance company continued to say “No.”
Determined to prove them wrong, Wiele pushed her case all the way to the Ninth Court of Appeals in California. Without any help or coaching from any disability advocacy group or an attorney, Wiele took on the insurance company by herself. “We were on a video conference with the judge in California. I made sure to let the court know that the insurance representatives chose to attend via phone rather than go down the street where I was speaking on video and meet me in person,” Wiele said.
The judge was further irritated when he found out they had never bothered to speak to Wiele’s doctor. “They didn’t have the pictures of the sores on my skin and feet either, but the judge had them,” Wiele said.
In less than half an hour the hearing was over. Wiele had won. Her new wheelchair was ordered and quickly delivered, too. Wiele’s fighting spirit was welcomed with open arms at this year’s CELA meeting in Washington, D.C. Her trek up Capitol Hill and meetings with congressional staff members certainly had an impact. Like so many other times in Wiele’s life she was again motivated by her forever philosophy of, “I’m going to prove them wrong” by encouraging our lawmakers to do what is
Wiele, like so many others who continue to conquer life in their own special way, is an inspiration. From Maine to Arizona, her search for freedom and independence is a touching journey we all should gladly support.
Jill may be reached at firstname.lastname@example.org.
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