“Look at that woman in the wheelchair. I’d better not look at her or walk too close. I don’t want to look like I’m staring. What’s wrong with her? I bet her life is just awful.”
Jen Onsum wants to end this kind of thinking.
She is a St. Thomas junior, studies public relations and plays hockey. She competed in a national pageant over the summer.
Jen Onsum has used a wheelchair all her life because she has spinal muscular atrophy, a form of muscular dystrophy, which limits her movement and makes her more prone to illness.
But Onsum, 22, is not too limited by physical limitations.
“My routine isn’t all that different,” Onsum said, “except that I need someone to help me. It takes me a little longer to do things and I need to rest a bit when I start to feel tired.”
Onsum became interested in attending St. Thomas through her friend Greg Marzolf Jr. “He was a student with muscular dystrophy at St. Thomas at the time I was looking into colleges, and he had always said what a wonderful place St. Thomas is,” Onsum said. [Marzolf died in April 2000.]
Onsum learned about the services available for students with disabilities and decided St. Thomas was the place for her. The school works hard to accommodate those with special needs through its Enhancement Program. Height-adjustable desks and electronic books are available, as are other services. Onsum’s professors have been willing to help, and they understand that her health may limit her class attendance.
Dr. Jeanne Steele, who teaches public relations, says Onsum works hard for everything she wants and does whatever it takes. Teaching is always a reciprocal act, and she and Onsum learned from each other, Steele said.
“She has helped me become much more open and more sensitive to people with disabilities,” Steele said. “We read about it, see movies, form impressions and try to be open-minded but it’s difficult. We all suffer from stereotypical views of people different from us.”
Onsum hires a personal-care attendant each year to help her get around school and to help her manage her books. This fall, junior Ania Gunderson is her attendant. Gunderson’s first contact with Onsum was when she photographed her for a photojournalism class. When Onsum began her search for an attendant, Gunderson was happy to help.
“She’s a nice girl,” Gunderson said, “not difficult to help, very sweet.”
Onsum plays PowerHockey, an adapted version of the game for those who use a power wheelchair. Craig McClellan, a former St. Thomas student, organized the game about seven years ago, and Onsum has played every season. “It’s a very intense sport with a lot of collisions and occasional tip-overs,” Onsum said.
Onsum is on a traveling team, the Minnesota Saints, and participated in the PowerHockey World Cup in 2001 at Augsburg College. Teams from the United States, Canada, Australia and Europe competed.
Onsum has attended the Muscular Dystrophy Association summer camp for 14 years. This year she returned as a counselor. She and a friend from camp spent nine months planning and fund raising so they could hold themed events at the camp.
Onsum’s most recent achievement was participating in the Ms. Wheelchair America pageant. She became interested at the Abilities Expo in Chicago last year, then saw a magazine advertisement looking for independent delegates from Minnesota. Minnesota does not have its own pageant.
Onsum kept a journal about her experience at the competition in Des Moines, Iowa. She wrote of the challenges of remembering a speech and what she took from the experience:
“I have always just dealt with and accepted inaccessible places, but the workshop made me realize that I need to stand up for my rights, not just for myself but for other people with disabilities who have the right to go to these places as well.”
Onsum spoke at the pageant about how the media improperly depict those with disabilities, leading to further stereotyping. The media, Onsum said, often show those with disabilities not having as fulfilling and happy a life as able-bodied people. Onsum suggested remedies such as creating advisory councils of experts and people with disabilities, and holding workshops for members of the media.
Many people with disabilities do not believe they can do many things and do not speak up for themselves, Onsum said. She hopes to use her title of Ms. Wheelchair Minnesota to speak up for those people and encourage them to become just as active.
“I learned … just how important it is to advocate for myself and my rights,” Onsum said, “and that being more outspoken about my rights doesn’t make me come across as a disgruntled disabled person but rather a person making a positive difference for others with disabilities.”