Miles Shaffer barely missed out on sharing the stage with Aerosmith when he was young. Instead, he introduced the opening act and his friend got to introduce Aerosmith.
Why? Shaffer said he didn’t look as disabled as his friend.
Both Shaffer, interdisciplinary studies senior and Delta Alpha Pi president, and his friend suffer from muscular dystrophy, a group of more than 30 genetic diseases which involve progressive degeneration of skeletal muscles which control movement, according to the National Institute of Neurological Disorders and Stroke’s official website. Shaffer said he could still walk around on his own at the time and his friend was in a wheelchair. Shaffer said the opportunities made available to him as an ambassador for the Muscular Dystrophy Association hinged on how useful he was to their public relations image.
“After I turned 18, I didn’t hear from them anymore,” he said.
The portrayal of children suffering from muscular dystrophy as pitiable is at the heart of The Kids Are All Right, a documentary that presents the history and views of a group of people who oppose the organization’s annual telethon.
About 40 people attended a screening of the film today in University Hall, presented by the Office for Students with Disabilities, the Disability Studies program and Delta Alpha Pi, an honor society for students with disabilities.
Social work junior Michael Lummus said he never knew how much animosity existed toward the portrayal of people with muscular dystrophy in the media.
“I didn’t realize there was such a backlash,” said Lummus, who was not alone in his reaction.
“It really opened my eyes,” said Farhan Hasham, a public relations and health administration sophomore. “I didn’t see how people with actual disability, with [muscular dystrophy], see it. They feel pitied. They feel like they’re being exposed out in a negative connotation. Instead of helping them, it’s hurting them.”
After the film, Shaffer led a discussion about how disabilities are portrayed.
“Just challenge what people think,” Shaffer said. “Challenge the way society typically thinks about disability.”
Penny Acrey , Office for Students with Disabilities director, recalled living a full and happy life growing up with osteogenesis imperfecta, a condition that affected the development of her bones. Except, that is, for when she watched the annual Muscular Dystrophy Association telethons.
“I felt that it wasn’t a good thing to be me,” she said.
Acrey and Shaffer put the event together with Sarah Rose, Disability Studies director, to raise student awareness about disability and its perception and portrayal in society.
“We have a narrow idea of normal,“ Rose said. “We want to help people think through public perceptions of disability and how those images shape what it means to be normal or disabled.”
Shaffer said the association isn’t all bad. They assist many people, including himself, to get the care they need, including wheelchairs, nursing and medicine.
“They also have provided me with some cool opportunities to meet some cool people,” he said. “I’ve met a lot of my good, good friends through the [Muscular Dystrophy Association],” he said.
The organization also provides a free one-week summer camp for children with muscular dystrophy every year, which Shaffer said is a big deal.
“It was a way you could escape,” he said. “You didn’t need your parents, you know? And as bad as it sounds, it made you feel normal that whole week at summer camp.”
For Nichole Sheridan, interdisciplinary studies sophomore and Delta Alpha Pi vice president, the film and discussion wasn’t just about muscular dystrophy, but was about raising awareness about things that people with all sorts of disabilities have to go through.
“You see people with disabilities every day,” Sheridan said. “Whether visible or not, you encounter them. And it’s just knowing how to approach it and be aware of it.”