The Facebook entry begins with a meme that is both humorous and candid, much like Lexi Willey herself, the 17-year-old Maple Grove Senior High School student who posted it. “Keep Calm: It’s Only Cerebral Palsy” is the opening to a few things she’s had on her mind for, well, the past 17 years. “I felt like I just wanted to clear the air,” says the fast-talking, composed and engaging teen. Lexi goes on to explain that cerebral palsy is quite common. That it’s the reason her hands occasionally don’t do exactly what she wants them to do, or why the muscles in her legs can get tight. Bottom line, she says, “There’s no need to judge anyone based on their disability. We’re all the same, we all want to be happy, to have friends. We’re all trying.”
What would you like to know about Lexi Willey? Her favorite musician is Taylor Swift and she’s addicted to the TV show Pretty Little Liars. She likes to hang out on Instagram, but if you can’t find her, don’t check her room—check the hockey rink. Yes, Lexi is an accomplished athlete, competing in year-round sports like adapted hockey, soccer and softball. Several of her teams have gone on to state competitions. She likes sports, including noncompetitive downhill skiing, for familiar reasons: good times with friends and a way to get out and about.
Most of her time at school is spent in one of two special education classrooms and she also takes choir, with mainstream students. She is very fond of the volunteer assignment she has reading to kindergarten kids twice a week, especially on a recent day when the kids were a little upset that they had a substitute teacher. “I walked in the room, they turned around and shouted, ‘Lexi’s here!’”
On a typical Saturday night you might find her with friends. And, in a friend, Lexi looks for: “Nice, fun to hang out with, someone who does not see just my disability.”
Lexi’s mother, Lisa, is particularly proud of how her daughter stays positive and happy and how she doesn’t let her disability get in her way. Even so, on occasion she and husband Mike have been called to be assertive on Lexi’s behalf; being their daughter’s fierce advocate is clearly in their DNA.
And what is there to advocate for? Education, for one: cerebral palsy is a static condition, not progressive, often resulting from an episode in utero or at birth in which areas of the brain were deprived of oxygen. In Lexi’s situation, it was the result of a congenital heart condition called atrial septal defect. On many issues, “advocacy” might simply mean that Lisa is there for her daughter. Which, as many present and former moms of 17-year-old young women know, can sometimes be tough.
Lexi laughs easily and is clearly predisposed to give others the benefit of the doubt, but when push comes to shove she does have a few beefs. “Don’t make assumptions about me,” she says. Questions are generally fine, for example, the answer to why she uses both a walker and a wheelchair is quite simple: it depends on what activities she has scheduled after school (sports, for example), and on other factors, like fatigue and pain. But sometimes, frankly, she gets tired of questions (“Do I ask other people why they wear one pair of shoes today and a different pair yesterday?”) and no, she’s not particularly interested in being anyone’s inspiration. What she would prefer, in her words, is just a normal conversation. “We’re all the same,” says Lexi. Far more similar, in the end, than different.
