WHITEWATER — For Amy Bleile, it’s a fact of life, something she accepts as a given.
When people first see her, they’re going to ask about her wheelchair. Now, though, after 28 years and two master’s degrees, she hopes people look past it quickly.
“I think that only lasts for the first part,” the University of Wisconsin-Whitewater graduate said. “And then people see me. And it’s OK to be curious.
“We should never focus on limitations. We should always assume capability, with everybody,” said Bleile, who currently serves as Ms. Wheelchair Wisconsin USA.
The Whitewater resident left today to compete in the national pageant in Cuyahoga Falls, Ohio, as one of nine finalists. She hopes to use her story — and her passion for advocacy — to help people with disabilities everywhere.
The Ms. Wheelchair USA is a pageant, one of only two specifically set for women with disabilities. While Bleile will be competing in such pageant standards as evening gown, she views the title as an advocacy program more than anything else.
“We go and we educate people about the issues that affect all people with disabilities,” she said. “I think education and advocacy are really important.”
Bleile was born with spastic quadriplegic cerebral palsy, the most severe form of the three types of spastic cerebral palsy. According cerebralpalsyguidance.com, the disease usually is caused by some form of brain damage, either before, during, or shortly after birth. Symptoms include everything from the inability to walk to muscle tremors to speech impediments and cognitive issues.
The last of those is something that Bleile combats when she discusses being a person with a disability. People think she has cognitive damage, as well.
“A lot of times, people have preconceived ideas about people with disabilities,” Bleile said. “One very common one I get a lot of the time is that because I have a physical disability, sometimes they think I might have a mental limitation.
“They’ll be surprised that I have two master’s (degrees) and that I’m a teacher.”
Bleile doesn’t just combat stereotypes or views of others about her own self. She is a school social worker, special education teacher and 504 coordinator as well, which means making sure that the places she works comply with the Americans with Disabilities act.
In short, what she does every day is what she’s doing as Ms. Wheelchair Wisconsin USA. That education is a huge part of what Bleile hopes to accomplish. She wants people to understand what it is like to live with a disability, with the limitations she is forced to accept.
“I’m just like everyone else, except my legs don’t work the way they are supposed to,” Bleile said.
Bleile’s platform for the pageant is “Education is the Doorway to Change.” She wants people to know not only her story, but what life is like for people with disabilities.
“We use education to break down barriers,” she said. “Any type of barriers. That’s my message. Right now, a huge issue that’s affecting people with disabilities and lots of groups of people are cuts to Medicaid. It’s huge.”
It’s why she went to Madison for an advocacy day in April, and where she met state Rep. Don Vruwink, R-Milton. Vruwink said that when he met Bleile, he was immediately impressed by her passion.
“I was so impressed when she came to my office,” said Vruwink, who is a former teacher who worked with special needs’ students. “I learned so much from her, and felt so uplifted by her story. She wants to contribute as much as she can.”
The two both agree that proposed cuts to Medicaid at the federal level will adversely impact all those with disabilities. Both Bleile and Vruwink want to educate as many people as possible about what her daily life is like — and how things would change if Bleile (and the more than 237,000 people with disabilities in Wisconsin) didn’t have access to the programs that she does.
“We don’t think people know what the impact would be,” Vruwink said.
For Bleile, those cuts would affect every part of her life. Bleile hires and sets hours on her own for the personal care aides that help her with every facet of everyday life. Because of the cerebral palsy, she needs help dressing and eating. She cannot drive, and she has been in a wheelchair her entire life.
Those personal care aides help Amy live. She decided to hire and handle the timesheets for them herself, rather than go through an agency, so she could have control over the aides she works with.
“They’re my friends,” she said. “I set my own schedule, the way it needs to be.”
Those aides work to Amy’s schedule, and she is very conscious of the fact that she must be extremely organized for “everything to work.”
The aides are not the only thing that Medicaid pays for. She goes to either a nurse or a doctor every day. Medicaid covers those costs, as well as the costs of prescriptions.
Without the access to Medicaid, she would not be able to live independently.
“If I don’t have personal care, how am I going to get ready for my day? How am I going to get to my job? How am I going to eat? How am I going to use the restroom?” Bleile explained. “How am I just going to live my life?
“All of these things other people don’t have to think about, I have to think about these things,” she added.
Added Vruwink, “Amy wants to work. Amy wants to affect people like herself. If she doesn’t get transportation, if she doesn’t get people to help her, she can’t get out to work.
“We would waste her abilities,” he added.
It’s not a pity party with her, however; far from it. Bleile knows that the proposed cuts would affect far more than herself. As a special education teacher, social worker and 504 coordinator, she sees students all school year with many of the same issues with which she is dealing.
“These cuts not only will affect me hugely, but they affect the students that I service and millions of other people,” she said.
Bleile is used to advocating for accessibility, and the title of Ms. Wheelchair Wisconsin USA (as well as potentially the Ms. Wheelchair USA) helps her do that. For the pageant this week, she will make a speech based on her platform, about 2 to 3 minutes long. She also will be interviewed by the various judges, and if she makes the top five, she will have to present a marketing strategy, too.
“I want to make sure I get my message across, how important it is to educate people about the issues that do affect people with disabilities,” she said. “Through education is how we’re going to make changes.
“It’s a way to break down stereotypes, to break down barriers of all types,” she said. “The wheelchair doesn’t define who I am. That’s just how I get around.
“I think we need to be acknowledging our similarities, and celebrating our differences,” Bleile added. “I wouldn’t change the fact that I’m in a wheelchair.
“I think it gives me a gift that a lot of people search their whole life for, and that is to focus on the really important things in life, and that’s who somebody is on the inside.”
For more on the pageant, including a link to watch live, go to www.mswheelchairusa.org.