When The Story of Beautiful Girl came out, I kept getting asked two questions. Why was I drawn to writing disability-themed literature? And was it hard to write from the point of view of characters with disabilities?
My answer to the first question begins with this basic fact: for one month every year, I am a twin.
My sister Beth, who has an intellectual disability, was born eleven months after me. So every year when I visit her for her birthday, the first thing we both say is, "Now we’re twins!" And for the next thirty days, as she gleefully moves through her days wearing the Tweety Bird shirts and using the Scooby Doo stickers I bought for her big celebration, we are indeed twins. Then my birthday rolls around, and when I visit her for that admittedly more secondary occasion, and she thrusts dozens of handmade cards at me, all of which express her happiness at my coming to see her, the first thing we both say is, "Now we’re not twins."
As with any siblings who are so close in age, we’ve shared a lot: parents, a brother and sister, a challenging family history, bedrooms, opinions, dreams, tears, jokes, anxieties, secrets, unspoken understandings, and sideways glances. So I have a reasonably good sense of how my sister feels, what she thinks, who she cares about, and why she does what she does.
Of course, there are additional layers to our relationship because of her disability. I feel a sense of responsibility toward her and she feels a level of trust in me. We’ve both always known that, whenever necessary, I will act as a go-between: I will explain to her the things she doesn’t understand about the world, and I will explain to the world the things it doesn’t understand about her.
At the same time, since she is a person with a disability, I’ve spent my life noticing--and being annoyed at--how so much of the world has got it all wrong when it comes to my sister and others like her. How she gets ignored by waitresses, snickered at by teenagers, patronized by people who assume she’s helpless, underestimated by people who assume she’s angelic. In addition, I’ve pondered many of the deepest issues about the mind. What is universal about intelligence? About sorrow and longing? About pleasure and love? On top of all this, I’ve long wondered: Why does so much of the public just not get it? And how, given that some people like my sister never get seen or acknowledged or heard by the world, might that ever change?
In 2002, I tried to do what I could to answer those thoughts. I wrote a memoir about my relationship with Beth, Riding The Bus With My Sister, which is about both her present-day passion of riding city buses and our lives as siblings from birth to middle age. The book, which was also adapted for a Hallmark Hall of Fame movie by the same name, led to my getting asked to give talks around the country. At every talk, I met more and more people with disabilities, their family members, and the professionals who work with them. They told me their stories, and I started to feel a new urge. I wanted to do whatever I could to give voice to those who had never been heard.
I realized I was in an unusual position to take on that responsibility. As a family member, I wouldn’t get bogged down by cliches and stereotypes. As someone who’d already published two books of fiction before Riding The Bus With My Sister, I wouldn’t have to stick with nonfiction, nor was I daunted by the idea of a novel. As a sister who’d stood up for Beth since the day I was conscious of my own existence, I felt a sense of mission. And as a once-a-year twin, I had developed the skill of being a go-between.
This gets me to the second question. Was it hard to write The Story of Beautiful Girl through the eyes of characters with disabilities?
I wish I could say it took a huge amount of effort. But there’s another word that’s synonymous with being a go-between: being a translator. I’ve spent my life translating the world into terms my sister could comprehend--and translating my sister into terms the world could comprehend.
So when I sat down to write the characters of Beautiful Girl and Number Forty-Two, I just did what I’ve always done. I wrote about the world’s rules and injustices and rewards and irrationalities as those characters would perceive them. And I wrote about their wonderings and yearnings and motivations and joys in ways that readers would understand.
Neither character is like my sister. And both go through adversity and anguish the likes of which my sister has never seen. But I wouldn’t say that writing their experiences was hard for me.
I would say, instead, that it was heart-opening and soul-deepening.
I would say, instead, that it was fun.
From Publishers Weekly
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