By attracting the power of stars like Rosie O'Donnell and Andie MacDowell, author Rachel Simon succeeded in bringing attention to the struggles and possibilities of those living with intellectual and developmental disabilities.
Simon's story "Riding Buses with My Sister" was turned into a movie, starring O'Donnell and MacDowell. It was directed by Anjelica Huston.
"Rosie wanted to make the movie so people can see that people with intellectual and developmental disabilities can live independent lives," Simon told WBFO News. The author will be speaking Saturday at 1 p.m. at Genesee Community College in Batavia. Her appearance is part of the annual Sprout Film & Speaker Series sponsored by Genesee ARC.
"Basically, we have an enormous number of people in this society who are very vulnerable and have a lot of needs, and we need places like Genesee ARC to make their lives better and the lives of everyone around them better," Simon said.
"Otherwise, we are going to have a society that's going to look like the Middle Ages and I don't think that's we want."
Simon has a special understanding of the subject. Her sister Beth has an intellectual disability. Her story is at the heart of "Riding Buses with My Sister."
According to Simon, Beth was in her twenties when she moved into a group home. That's when she began spending hours a day navigating the regional bus system.
"Nobody could understand it," Simon said.
"It was too eccentric and too unproductive, to our minds. We wanted her to get a traditional job in a sheltered workshop or in a grocery store. That is not where she wanted to be."
The bus is where Beth wanted to be. She did not attend the L.A. screening of the film of her life because it would have meant missing her buses for too many days.
Looking back, Rachel Simon sees the value of her sister's unique affinity for buses; initially, however, that wasn't her perspective, until her eyes were opened by her editor at the Philadelphia Inquirer.
"He was fascinated by it (the buses) and he said, 'Have you ridden with her?' And I said, 'No.' And he said, 'All right, your next assignment is to ride with her for a day and write an article about it.'
"So, with her permission, with her wild, enthusiastic permission, I did. I was really surprised that what I had imagined the situation to be, which was her kind of inventing these friendships, was not the case. The case was these were real friendships. People really cared about her, and a lot of freedom, and a lot of joyful independence."
Newspaper articles expanded into a book. The hopeful nature of the story gained the attention of the movie industry.
"I have stayed in touch with Andie MacDowell," Simon said.
"She has told me she was utterly transformed by the movie. She said, 'I will never see people like your sister the same way that I did before I did that movie. It has completely changed how I look at people like your sister. I view them very differently.'"