Amber Buysman: A matter of urgent necessity
Words by Jerome Christenson, photographs by Cloey Jo Walsh
Sometimes life makes quiet heroes.
Student. Mom. Caregiver. Advocate. Just an ordinary day for Amber Buysman.
“I have so much left to do in life,” Amber said, “I still have hopes that one day I’ll be able to do the Peace Corps…” Meanwhile, she is more than keeping busy. In addition to being her seven-year-old disabled son’s primary caregiver, she has a part-time job and is working toward a nursing degree, a program she hopes to complete by December 2024. As if that’s not enough, she graduated from Engage Winona’s Lived Experience Leaders program in 2022 and made a run for the 4th Ward Winona City Council seat.
A life is never really ordinary. We just call it that when a person’s circumstances, experiences, and choices don’t step away too far from those of the people around them. And from that perspective, born in 1984, one of two children in a single parent home, growing up in St. James, a village of about 5,000 people a few miles off Interstate 90 in south central Minnesota Amber could well have anticipated a reasonably ordinary American life.
Reflecting on those years, she recalls days spent with grandparents on their family dairy farm, a place on the high school tennis team and other school activities, earning the highest honor in Girl Scouting — the Gold Award, high school graduation in 2002 and moving on to college and experiences far beyond a small town…events of personal significance, but not all that unusual for the time and place and circumstance.
But with them came an insight and awareness of how life’s playing field is rarely level and how income and disability limit access to opportunity. Family circumstances made them eligible for a Habitat for the Humanity home they moved into when she was twelve and she recalls the special arrangements made by her tennis coach to assure that every student, regardless of family income, could have an opportunity to play. It was an awareness reflected in her commitment to Habitat for Humanity as a junior board member and active volunteer and fundraiser and in her Gold Award project — helping construct a handicap-access ramp to the local movie theater.
These commitments she carried with her as she left St. James behind. As a student at South Dakota State University, she served as a volunteer and Spanish translator for the Brookings, South Dakota, Habitat chapter. For four years in Brookings she worked as a care-giver for people with all levels of disability. “Little did I know this would come full circle when I became an actual adult,” she said.
College graduation and degrees in teaching took her to a job in Ohio teaching an adaptive phy-ed start-up program for children with severe emotional disturbances in grades 1 to 12. “I started school with zero equipment,” she said, but with the help of a $500 grant developed a successful program. “When I told the kids I was leaving, one of them hugged me and said, ‘Miss B, what are we going to do without you?”
Other teaching jobs followed, but in the fall of 2010, budget cuts left her with no position and no immediate prospects. “A friend was teaching in South Korea,” she said, “and I’d always dreamed of joining the Peace Corps…”
It wasn’t the Peace Corps, but a private company that she applied to, and in short order she was teaching English in Daegu, South Korea, with transportation and housing provided, along with Korean national health insurance.
“It was a one-year adventure that turned into six years,” she said. “Other than missing my family, there was not a lot of motivation to come back to the U.S.”
In time, there came marriage and the birth of a daughter; then two years after Sofia arrived, Amber was expecting their second child. Prenatal examinations indicated the newborn would require the services of a neonatal intensive care unit, requiring the child be born in Seoul.
“Erick would spend 41 days in the NICU,” Amber said. A snippet of DNA missing from a single chromosome resulted in multiple developmental abnormalities that necessitate a lifetime of 24-hour care. A particular medication needed to treat Erick’s condition was not available in Korea, sending Amber and her young family, scrambling to get themselves and a critically medically fragile Erick to the United States.
“I had to ask my family if we could live with them,” Amber said. “Coming back to the United States I would have no job, no car, and not knowing what Erick’s future looked like.”
Initially they stayed with an aunt in Northfield while Erick was evaluated and treated at children’s hospital in Minneapolis. “In August, 2017, we moved in with my brother in Minnesota City,” she said, and care was established for Erick at Gunderson in LaCrosse.
The ensuing years have been ongoing challenges interspersed with medical crises. “I’m a single parent,” Amber said, “COVID was a difficult time for us. Erick being medically fragile meant we were very limited in our social space.” She said that Erick’s condition leaves him with “a shortened life expectancy, but no one can say exactly what that means.”
In the meantime, “life revolves around Erick,” Amber said. “We try to get him out in public as much as possible to give him new experiences. We go camping. We go on trips. We go to the Marine Art Museum. We go to the beach…but he doesn’t like cold water…he only likes hot tubs.”
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Erick’s multiple disabilities pose a number of challenges when he leaves the house, but one in particular has moved Amber beyond personal frustration to public advocacy. She says that while the Americans with Disabilities Act has sparked changes that vastly improved public access for people with disabilities, adult toileting needs have not yet been fully addressed.
Erick is incontinent. “He wears briefs,” she said. But while many public restrooms provide infant changing tables, there are no comparable provisions made for larger children and adults who require similar assistance in dealing with toileting needs. “I change him in the back of my van in the summer,” she said, but this is not an option in cold weather. When no other option is available, she said, she has to lay him on the restroom floor to take care of his needs. “People walk on the floor with dog poop on their shoes,” she said.
That lack of dignified access to meet a basic human need motivated her to adopt toileting access as her Lived Experience Leader Community Change project.
“No one wants to talk about toileting,” she said, “But the need is real.”
Equipping public restrooms with adult-sized changing tables would not be a prohibitive expense, she said, and would serve the needs and preserve the dignity of a growing population for whom incontinence is a fact of life.
“Personally, I have a changing table we no longer utilize, and my goal is to get it out into the community somewhere. I just haven’t figured out the place that would be accessible to the most people,” she said, “but my ultimate goal is to get Kwik Trip on board…Kwik Trips are everywhere.”
“Maybe we can get the ball rolling.”
“I’ve always wanted to have a positive influence and be a voice for the underserved,” she said. “Winona’s a great community. I feel there’s a great opportunity for change.”
Learn more about the need, advocacy, and available resources for Universal Changing Tables in public restrooms at www.changingspacescampaign.com
Learn more about Cloey’s photography at www.clomotionpictures.com
The stories shared here were produced through a collaboration between Art of the Rural and Engage Winona.
This activity is made possible by the voters of Minnesota through grants from the Minnesota State Arts Board, thanks to a legislative appropriation from the arts and cultural heritage fund.