Two new books help kids navigate developmental differences
A couple of years ago Adele Bergstrom came across some of her 15-year-old daughter Brita’s school papers (“I wasn’t snooping!” she emphasizes with a laugh) and noticed some meandering notes about how her daughter was sick of hearing her classmates use the word “retarded” without thinking about what it means to those with developmental disabilities and their families. Brita’s brother Carl, now 15, has Down syndrome, and her words had a profound effect on Bergstrom. “I had an epiphany,” she says of her reaction to Brita’s anger.
That epiphany inspired the St. Anthony-based Bergstrom to apply for a grant from Sappi Fine Paper’s “Ideas that Matter” program, which awards money to designers (Bergstrom is a freelance writer and designer) who want to create projects that serve a cause close to their hearts. The grant stipulates that the designer has to partner with a nonprofit, and Bergstrom aligned with Fraser, the Minneapolis-based organization that serves adult and children with a variety of special needs, to put together Who Asked Me: A Journal of Discovery and Sharing by and for Siblings of People with Developmental Disabilities. According to Chris Bentley, director of the Fraser Institute, Bergstrom’s book concept addressed a topic that is often ignored. “There are not a lot of resources out there similar to this book, and we hear from families that there is a need to talk about things from the sibling’s standpoint.”
Working with Fraser psychologists, Bergstrom developed a journal of questions that would encourage participants to respond candidly about their frustrations, hopes, and innermost thoughts about life with a special-needs sibling. By sending out postcards to Fraser’s mailing list, as well as running ads in various area newsletters (and tapping Brita and her older son Haakan as sources), Bergstrom found a core group of kids willing to talk about life with a developmentally disabled sibling. And even though Bergstrom felt she had a handle on how these kids would feel after the experiences with her own children, she was still taken aback when the journals came in. “I was surprised at the underlying theme of these kids being frustrated but defending their siblings without question,” says Bergstrom. “The older the respondents the more philosophical they were about it. There was a consistent message of tolerance and a willingness to accept people different than them.”
That message is clearly reflected in the book, which is peppered with photos of the siblings engaged in typical family activities together. Who Asked Me highlights the mix of annoyance and love that ties these siblings together, as emphasized by Allana, 19, who wrote of her brother, “It is very hard and frustrating at times. It was hard growing up not understanding why we couldn’t go on a family vacation. It is hard now not to do anything spontaneous because we need someone to watch my brother. He has really pushed my patience at times, but without him doing that, I would not know the patience I have today.”
The book closes with the siblings talking about their hopes for the future, which is the most touching (and at times painful) part of Who Asked Me. Some of the kids worry about being good advocates for their siblings, while others wonder how the world will treat them. Bergstrom’s daughter Brita writes of Carl, “My hope for my brother is that he finds a purpose in life, like anyone else.”
The People on the Corner
“Like anyone else” is a phrase Leslye Orr likes to hear. As the author of the picture book The People on the Corner, her goal is to get readers of all ages to see people with disabilities as just that: people, first and foremost. “Society has a fear about discussing disabilities,” says Orr, who herself is legally blind. “I want to erase as much judgment as I can.”
Orr, who lives in St. Paul and runs Dreamland Arts, a performing arts studio, got the idea for The People on the Corner about 25 years ago and worked on it in fits and starts until self-publishing the first edition in 2003 (a revised second edition came out this year). The story surrounds a group of friends who find out their new neighbors, the Longs, are different — very different. They have 12 children of various ethnic backgrounds who have a range of disabilities, including deafness, autism, blindness, and paraplegia. Even their pet, a three-legged cat named Trike, is different. The kids are skeptical about playing with their new neighbors until they join the Longs for a pick-up baseball game and learn that everyone plays the game to their own ability, regardless of what that is.
Orr’s goal is for children to see and read about disabilities when they are young so they become aware of different ability levels. “If you pick up a book when you’re 3 and see differences, then they aren’t differences anymore,” explains Orr. “If people become familiar then, the categories die and we get to just be people.” Orr hopes to expand The People on the Corner to older children by putting together a chapter book that, while mentioning the various disabilities, instead focuses on the adventures the children have together.
Fraser also has big plans for The People on the Corner, including creating curriculum to go along with the book that teachers can use in the classroom to share a lesson about inclusiveness. “Any education we can do on inclusion is education we want to promote,” explains Bentley, who adds that Orr herself is inspirational to young readers learning to look beyond differences. “Leslye shows that having a disability doesn’t need to hold you back from your own passions and opportunities, which is a very positive lesson.”
Monica Wright is Minnesota Parent’s assistant editor.
