Angels of Mercy— Summer 2012
Advocates can be difficult to find and impossible to forget. Some take up a cause with both feet firmly planted, while others quietly live out a spirit of advocacy so strong they themselves might not realize its potency. They can walk among us humble and invisible, yet their work can impact countless lives in profound ways. Sometimes the role seems to find them. Yet always, they are especially equipped for the task. Advocacy finds a home in the lives of two extraordinary Mount Mercy alumni, and through their determination, humility, and courage, they give others hope and purpose for tomorrow.
Michael Kutcher ’02 did not see this coming.
After graduating from Mount Mercy with degrees in management and finance, he did not anticipate the direction his life would take after meeting a small five-year-old girl, who would introduce him to a role he was born to play.
Kutcher, who was diagnosed with a mild form of cerebral palsy at birth and underwent a heart transplant and other subsequent heart surgeries in the early 1990s, was quietly living out his condition with soft strength – until an encounter shifted his outlook and led him into a role of advocacy and fresh conviction.
Because his condition was mild, Kutcher had the ability to escape much of the scrutiny and discrimination that comes with the stereotypes of people with disabilities. It was his twin brother, actor Christopher (Ashton) Kutcher, who helped bring his condition to the public’s attention, leading him to Bella, a little girl who would change his outlook on what it means to give back.
“I was approached about three or four years ago to speak about cerebral palsy at a gala,” says Kutcher. “I graciously declined, stating in not so many words, ‘I don’t have a disability.’”
The invitation came from Kristi Trotter, and the gala in question was for an organization called Reaching for the Stars, a nonprofit that provides support specifically to children with cerebral palsy. Despite his initial hesitation, Kutcher would soon find the pull too impossible to resist. Trotter introduced him to her then five-year-old daughter, Bella, who had a more pronounced form of cerebral palsy, requiring her to use a wheelchair and walker. The encounter was mesmerizing.
“That’s all I needed,” says Kutcher. “I got a clear picture of what Bella was dealing with on a daily basis. She was a little girl who couldn’t speak…she was a very intelligent girl, trapped in a body.” And Kutcher found his wings.
“I went home after that meeting and I looked in the mirror and had a face-to-face discussion with myself,” he said. “I told myself, ‘You are dealing with the same diagnosis she is…and what are you doing?’ I was ashamed of myself for hiding for so many years. I thought — this is what I can do.”
Kutcher agreed to speak at the gala, and repeated the gesture in 2010, helping raise more than $100,000 for cerebral palsy research and advocacy. His travels routinely connect him with people who share a piece of his story, but for Kutcher, his encounter with a small, wheelchair-bound girl will forever stay paramount.
“I don’t think I knew who I was until I met Bella,” he says. “I had been struggling for years with how to utilize this for the greater good of other people,” says Kutcher. “I wanted to change views, to help other people.”
When Katie Beckett ’01 was born in 1978 with viral encephalitis, her parents knew immediately that she was a natural fighter.
Beckett, who passed away on May 18, 2012, spent 12 hours daily on a respirator, and the first few years of her life in a pediatric intensive care unit. But that didn’t stop her from going to school, living on her own, starting a novel or lobbying in Washington, D.C. on behalf of children and their families who struggle with navigating healthcare issues.
“That was the start of it, a fighter from the beginning,” says Beckett’s mother, Julie. “She had to fight for everything.” Unknown to her at the time, Beckett’s condition would launch her on a unique path. Once the Beckett’s private insurance coverage reached the $1 million benefit limit, Medicaid became the provider for the young girl’s medical expenses. Medicaid’s policy at the time would only pay for the use of a respirator in a hospital setting, essentially “tying” Beckett to a hospital bed.
So Julie advocated for her young daughter, urging Congress to take action that would allow Beckett to receive care at home — an easier and more cost efficient method. The case garnered the attention of then-President Ronald Reagan, who described the situation as “an example of irrational federal regulation.” The legislation that followed became known as the “Katie Beckett Waiver,” and allowed people to receive community health care, as well as in-home care, under Medicaid. Beckett, at age three-and-ahalf, finally left the hospital one week before Christmas in 1981.
“It was wonderful,” says Julie. “We never expected the President’s intervention would get her home.” Today, 11,000 kids in Iowa are enrolled in the Katie Beckett Waiver program, allowing them to receive health care in their homes, according to the Iowa Department of Human Services. Nationwide, more than 500,000 disabled children have benefited from the Katie Beckett Waiver program.
While only a young girl at the time, the victory was the catalyst that launched her into a role she seemed born to play. At the tender age of seven, she was already accompanying her mother as Julie testified before Congress on the importance of health care coverage. “She didn’t really understand how important it was until she was 10 years old or so, but then she started to realize that people were listening.” It was only a matter of time before Beckett found her own voice. Soon, she was not only accompanying her mother to Washington, D.C., and around the nation, but speaking out on her own — meeting with congressmen and sharing her story first-hand on the importance of healthcare.
“She grew into this role as an advocate, and knew how important it was that her voice meant something to everyone else,” says Julie. “She wanted to speak up for others and let them know that it’s okay to be a little different, but you just had to keep fighting. As she aged, she knew how important it was to inspire others.”
Today, Kutcher serves on the Board of Directors for the Reaching for the Stars foundation, volunteers with the Iowa Donor Network, and regularly speaks at events — using his voice and experience to lobby in Washington, D.C., on behalf of those who can’t speak for themselves.
“You are really aware of who you’re speaking for,” says Kutcher. “I’m not doing this on behalf of myself. What we are lobbying for is funding for research, development, and ultimately a cure. It’s not about me, it’s about all the individuals effected with CP — the children like Bella.”
Beckett went on to help launch Kids As Self Advocates (KASA) in 1997, a nonprofit that empowers children and strengthens their ability to advocate for themselves. A few years earlier in 1991, her mother helped start Family Voices, a national nonprofit that aims to achieve family-centered care for children and youth with special health care needs and/or disabilities.
While Kutcher and Beckett’s paths may never have crossed, their work is tied together in a joint mission of unity, one that continues to impact people across the nation. Perhaps more powerful than any legislation, both serve as tangible reminders of what it truly means to advocate for another — to lift them higher than they could stand alone.
“People with disability should not be discredited,” says Kutcher. “They have to try harder, work harder than you do to achieve the same goal. So how is that a disability?”
“People should look at every individual for their abilities, not their disabilities,” echoes Julie. “Everyone comes in a different shape and form.”
Through their lives and work, the mission of Mount Mercy takes flight across the nation and serves as an inspiration to others.
“If I’m an example of anything, I want to be an example of a guy that’s been approached by death several times, and still has the will to go on and live life the way it’s supposed to be lived,” says Kutcher. “I want people to look at me and say, ‘Wow, he almost died three or four times and he is out there caring for people? I have no health problems, no issues, what can I do?’”