Editor’s note: The Post Independent, in conjunction with Valley Life For All, continues a monthly series of profiles about people in our community who have different abilities.
Meet Ella:
Were it not for ice cream, with the specific ingredients of coffee and cookie dough, Ella Munk’s days would be much harder to handle. Her own ingredients of a can-do attitude and set goals also make living with Williams Syndrome not only tolerable but often exciting.
Ella was born with Williams syndrome (WS), a genetic disorder. Facial features frequently have an appearance that has been described as “elfin,” and those with WS have mild to moderate intellectual disability as well as emotional challenges. People with WS often have an outgoing personality and interact readily with strangers.
This description is what Ella is going to relay during her high school Capstone project at the upcoming April health fairs in Carbondale and Glenwood Springs.
“It shrinks my world,” says Munk from her home in Missouri Heights with an expansive view of the Roaring Fork Valley. “It makes me isolate because people don’t understand, so with my Capstone project, that’s what I’m going for, to get people to understand. It’s very important for people to know that people with disabilities have a right to freedom and not be discriminated against.”
Jill Pidcock from Arc of the Central Mountains is Ella’s community representative for the Capstone project. Together, they’re working on a PowerPoint and speech to educate people on this rare condition. Pidcock points out she only helps Munk reach her “deliverables” for the Capstone. “I am super impressed with Ella’s technical writing skills and with her contacting people in the community,” says Pidcock. “She is a very social and eloquent speaker. I’m very pleased with her progress; she’s delightful.”
Ella is a senior at Glenwood Springs High School and is awaiting word to see if she is admitted to the University of Colorado in Colorado Springs. It’s a goal she’s excited about, but says every day is a struggle in school with WS.
“Some days are good, some days are horrible. Sometimes I shut down. People don’t understand my feelings. It’s a lonely thing,” she says. “They say, oh, she’s really weird. It saddens me. I feel so much rejection, and I don’t have many friends.”
Her WS makes emotional struggles all the harder. “Some of us feel suicidal or have depression, but we are still as strong as wheatgrass in the wind.” It’s also hard for Ella to focus, especially with academics. “Sometimes there’s triggers, like when a kid whistles, I think in my mind it’s my mom whistling, but she’s not there.”
There’s the good side, too. Ella has two very good friends who see Ella, not her WS. Ella recently won three gold medals at the Special Olympics held at Copper Mountain in February. She spoke at a Youth Leadership Forum where she learned about advocacy and disability rights. She loves to dance. “It makes me feel like I’m in heaven in the moment and forgetting,” she says, getting emotional. “No one knows how I deal with all this stuff.”
That’s where eating ice cream comes in. “I get worked up and don’t mean to — that’s part of WS. I think of the worst things, and I don’t stop myself. But I can turn it around, I eat ice cream every chance I can get!”
Skiing in the Special Olympics and winning helps, too. “I’m like a lightning bolt, and I shred!”
Her Capstone project, looking forward to college and setting goals are key to living with WS, along with a healthy dose of self-confidence. Says Ella, “My Capstone story is about my disability. Sometimes it’s an evil thing, like it’s a sin, but it isn’t. It’s a miracle.”
The health fairs Ella Munk will be speaking at are April 4 in Carbondale at Roaring Fork High School and April 25 at Glenwood Springs High School.
Local nonprofit Valley Life for All is working to build inclusive communities where people of all abilities belong and contribute. We want to hear your voice. Request a training or join the conversation at http://www.valleylifeforall.org or #voicability4all. Help us redefine the perception of challenge.