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The Story of a Beautiful Concept; an Interview with Rachel Simon

Please note: Rachel is traveling for appearances to the Northeast US this week and has several other appearances scheduled in April.

 

Author Rachel Simon is probably best known for her book Riding the Bus With My Sister, a memoir of her relationship with her younger sister Beth, who has an intellectual disability. Because of the success of that book, she has become known for her support and understanding of special needs issues. She continues that reputation with her new novel, The Story of Beautiful Girl, which comes from a unique perspective – the story centers on a man (Homan) and a woman (Lynnie) with special needs who fall in love while living in an institution in the 1960’s.

The Story of Beautiful Girl explores the relationship between these two characters, their relationships with others, and how they navigate through life’s challenges, both together and apart. Each Chapter is written as a first-person account, so what the reader sees on the page are the thoughts, statements and actions of the main characters, particularly Lynnie and Homan.

I was especially excited to have the chance to discuss the book and the issues it explores with Rachel because I also have a sister with a disability (Downs Syndrome). As someone who has first hand experience being a “sib” (just like Rachel) and the challenges that people like our sisters face, I couldn’t wait to get Rachel’s thoughts about her motivation for writing a novel with such a unique central storyline, as well as what motivated her choices in plot and character, and why she writes about disability in the first place.

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First of all, I love the central story in your book – What made you write a book with a love story between two persons with special needs as the central element? It’s not a common theme…

My sister Beth, who’s 11 months younger than me, has an intellectual disability. She was raised at home, though when we were growing up, in the 1960s and 1970s, a lot of children with her disability were sent to institutions, or, as we said in my family, “put away.” So I had the benefit of growing up at her side, while at the same time noticing how few other people like her I saw in my daily life. I was also a reader, so I was equally aware of how rarely I saw anyone with any disability in a book. It was as if almost  no one in my real life, and almost no one in the literary world, was willing to acknowledge the reality that was right in front of my eyes: that there are people with special needs, and they have all the fullness of personality, and range of emotions, that any of us have.

There were a few occasions when I did see people like Beth in books: Flowers For Algernon, Of Mice and Men, The Sound and The Fury…yet so often the characters would either be incomprehensible or come to a tragic end. If they were allowed to have a love life, it wouldn’t last. Their friendships might even end in the friend killing them. Where were characters more like my sister, who could be giddy, clever, romantic, bold, stubborn, flamboyant, and a serious force of nature?

As I grew into a professional writer and she grew into an ever-more complex adult, I felt all the more aware of this literary hole, though by then it wasn’t just from being a reader because by then I’d become a writer. And I saw that, whenever I wrote stories about people with disabilities, I had trouble placing them in magazines. I once asked my then-agent why this was the case and the answer was: “Because editors are seeing it as just another ‘disease-of-the-week story’.” I was appalled as a writer, and furious as a sister. I thought, “When I get in a position to do something about this, I will.”

Three books and many years later, writing “Riding The Bus With My Sister,” led me to become closer to Beth and taught me more about her world from the inside, I had a deeper and more informed perspective than ever before. A few years later, I lost a job I loved due to restructuring; I put the pen on the page and immediately “The Story of Beautiful Girl” began writing itself.  Within a page, I realized the story involved two characters with disabilities, one who, like Beth, has an intellectual disability, but who is also mostly nonverbal. The other character would be, like Beth’s boyfriend, African American, but would also be deaf. It was just natural to me that I would write some of the story from their points of view, and that it would be a love story.

I wish I could say that I had some agenda in mind when I started the book. But really it was just a long, pent-up desire that finally found its form without any preparation or planning. I wrote the book of what I’ve lived; the reality that was always in front of my eyes.

How were you able to write the relationship between Homan and Lynnie in an authentic way? Have you had direct experience with/have you observed directly a love relationship between two special needs people? If so, what do you think is unique about these types of relationships?

I spent a lot of time with my sister and her boyfriend when I was writing “Riding The Bus With My Sister,” and I got to know him even better after it came out. He let me interview him a few times, so I also had a sense of his life before they met, and, since he’s from a different ethnic background and comes from the South, I was able to draw on some of his stories when I created the background for Homan. I need to clarify that Homan is his own character, and is also influenced by an African American deaf man I read about in the book “God Knows His Name: The True Story of John Doe No. 24,” by Dave Bakke. Also, Homan is deaf and does not have an intellectual disability, whereas the reverse is true for my sister’s boyfriend. But it was pretty easy for me to enter into a romantic relationship between to people with disabilities.

I suppose one of the major differences in relationships between people with special needs is that society doesn’t expect it, and it’s seen as somewhat taboo. Therefore, people with special needs might not receive the kind of informal guidance about relationships that the rest of us get in casual conversation with parents, siblings, and friends. Instead, people with special needs might get the message that romantic love isn’t something they’re allowed to want or to act on. This can lead to confusion about very basic things, or it can lead to resentment and sneaking around. And if the person does find a prospective sweetheart, it can lead to bad judgment, not understanding how to disagree in a constructive way, fear of saying no, and on and on. Basically, if we infantilize people with disabilities, we can’t provide the support, perspective, modeling, and education that all of us need to develop healthy relationships.

We’ve been blessed with excellent support staff ever since my sister moved out of the family home, and I can tell you that with caring, well-trained, and dedicated aides, the individual always has someone to turn to for advice, support, and even friendship. This can be extremely helpful when a person gets interested in forming a close relationship with another person with disabilities. I know there have been many times when my sister has had questions about how to handle certain interpersonal dynamics, and her aide has helped her figure that out.

Love, as wonderful as it is, can be hard for any of us. It takes time to realize you need compassion, forgiveness, patience, the ability to compromise, etc., and even more time to hone those skills. It also takes a lot of effort to cope with rejection, insecurity, self-esteem issues, etc. For someone with special needs, these learning curves are a lot longer, and take a lot more effort.

You chose to have Martha – the central character for much of the first of the book – act as the caretaker of baby Julia – how do you think Julia’s life would have been different if Lynnie and Homan were able to get away and build a life together and raise her themselves? There are a lot of people that would argue that a person with “special needs” is not fit to be a strong, reliable parent for a growing child…

This is a difficult question for me to answer, since Julia wouldn’t just be any child being raised by parents with disabilities. She’d be a child whose parents were on the run from the authorities in an institution, and therefore who wouldn’t be at liberty to seek support from any agencies. Also, both parents would need assistance acquiring communication skills, as well as instruction in ordinary activities, from securing housing to earning money. Because of all the opportunities they didn’t have, Julia’s life would have many limitations.

I object on principle to making blanket statements about any group of people so I can’t say a child would necessarily do well or poorly with parents who have disabilities. I think it depends on who the parents are, what their skills are, and how much support they have.

Sometimes I’m asked: If there’s one message I want readers to get out of my book, what would it be? II have to boil it down to one message, it’s that all individuals are unique, with inner lives that others might underestimate, and with the desire to love, be loved, and live with dignity and respect. We as a society can’t say, “People with disabilities are like this,” or “People with disabilities can’t do that.” We have to look at each person, and each situation.

The lighthouse is a symbol that is repeatedly referenced throughout the story. Is a “guiding light” something that you feel is important for us all to have, whether we have special needs or not?

I did indeed see the lighthouse as a multi-layered symbol. I saw it as a place of safety, a beacon that brings people home, a guiding light, and an image that has some spiritual overtones, i.e., the light that remains even in the darkest of times. I do think a guiding light is something we all need, whether or not we have special needs. It can take the form of God, a wise friend, a trusted aide, insightful books, or sites like Support for Special Needs. We all need a little help, especially when the journey seems endless and impossible, and we can’t imagine how we’ll ever survive.

What motivates you to write books centred around people with special needs? Do you have any future plans for more books about special needs (fiction/non-fiction)?

As a sibling, I think I’ve spent my life as a translator: I translate my sister to the world, and I translate the world to my sister. Consequently, I feel I have a perspective that others don’t seem to have. Once I realized I could write, I felt it was important to use that skill to help make the world more hospitable to people like Beth. I have certainly written books on other topics, but I’m glad that the ones about people with disabilities have proven so incredibly popular.

I think it’s very likely that I’ll continue writing about people with special needs. Whether every book will work with this material, I don’t know. But I have to say that there is still much work to be done. And as long as the stories keep coming to me, I am definitely going to keep writing them.

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Thank you so much to Rachel for her insightful answers.

I found myself completely absorbed in this book, devouring the beautiful prose but at the same time wondering – why are there not more books published featuring main characters living with a disability? Let alone books written from the direct point of view of those characters (their thoughts, their words). One would think that in today’s progressive and tolerant age that this theme would not be so uncommon, however that is not the case.

I have a pipe dream to one day write a book based on my experiences with my sister as well. At least I know that if one day I do, doors will be open that were previously closed, thanks to writers like Rachel and stories like that of Story of Beautiful Girl. And the more of us that write about special needs issues in an honest, authentic and respectful way, the more doors and minds will be flung open and the more understanding there will be of people with special needs – people like Beth, my sister, Lynnie and Homan.

I hope to see many more stories of beautiful girls (people) in the future.

We encourage you to follow Rachel on Twitter at @rachelsimon. For information about Rachel Simon and her books, visit here. For information on where to buy the book, visit:

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One Comment
  1. Kim Piccott
    March 20, 2012 | Reply

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