by Rachel Simon
My sister has an intellectual disability, like Lynnie, so even though their personalities have little in common, it felt fairly natural for me to imagine the way Lynnie would think, feel, and express herself. I did have to use my imagination, research, and interviews to incorporate aspects of Lynnie’s life that are unlike my sister’s, such as her many years in the institution, her lack of education, and her selective mutism.
The same applies for Homan. I was, though, even more careful, since I am not, nor am I related to, anyone who is deaf. (I am also not related to anyone who is Deaf, which is the way those in the deaf community who have a strong identity as deaf people and are involved in deaf culture, write about themselves.) In terms of his ethnicity, I did have a personal connection; my sister’s boyfriend, Jesse, is African American, and some of the stories he’s shared with me from his childhood informed my understanding of Homan’s past.
In addition, I showed the manuscript to several readers with relevant personal or professional experiences, and incorporated their comments into my revisions.
2. The antagonists in the book are staff people in the institution—yet one of the heroes of the book is Kate, who is also a staff person, and who we get in much more depth. Did you do that simply to balance the picture?
I’d known several direct support professionals through my sister and I had a lot of respect for them. I’d also come to realize that they tend to be misunderstood, maligned, or unacknowledged in most books, so for years I’d had a side project of collecting their stories. As part of that, I’d spent time speaking with staff who worked for Keystone Human Services in central Pennsylvania and I interviewed several people who’d once worked at institutions. I also attended a conference for the American Network of Community Options and Resources (ANCOR), a national organization that advocates for agencies that provide what’s called community-based support services and employ people like Kate. I learned that the best direct support professionals (DSPs) are deeply dedicated to the individuals they serve and strive to support them in the choices they make to live, work, and participate in the community. So it wasn’t that I chose to balance the picture as much as I felt compelled to highlight a character who works hard to promote self-fulfillment, self-determination, and self-advocacy.
3. All of the main characters end the book fully satisfied and happy—except Martha. Why did you decide that she had to die? And how did Edith, the curator, end up with Martha’s wooden box?
It broke my heart to make the decision that Martha would die. Martha was the first character I spent time with when I wrote the book, since the first chapter is in her point of view. Additionally, I too am childless, as well as a former teacher, so I felt very empathetic toward her. But I knew the story was going to last until 2011, which would require that Martha live to 113, something so rare in real life that it might nudge the book toward fantasy. Having accepted this sad truth, I just had to decide when Martha’s passing would occur in the story line and how much Julia would know by then.
I hope the loss of Martha partway through the book was offset by how much she loved Julia and Pete, and how completely her life had changed.
As for the wooden box, here’s what the reader knows: Just before Martha dies, she tells Pete he shouldn’t share the box with Julia until she’s emotionally ready. Later, Pete sends it on to Eva, something that becomes evident because Eva gives the box to Kate when she goes to see Lynnie in Harrisburg. Kate then reads the letters to Lynnie and gives the box to her. Lynnie stores the box in her closet in the group home, taking it out once when she puts her necklace inside, then again so she can remove the necklace to wear it again. That’s the last time the reader sees the box until it appears in Edith’s office near the very end of the book.
So how did the box get to Edith? As the reader learns, Lynnie and Homan formed an artists’ collective. It seemed reasonable to me that, by the time they made the mosaic, Lynnie would have long since given up the idea that she would ever find her daughter. So keeping it with the mosaic was more important than keeping it herself. As Edith said, “When the mosaic was donated to us, the collective included this box for us to keep in our archives. It has a lot of documents and other material. They provide an interesting background on the story the mosaic is telling.” Although Lynnie wanted to hold on to the details about Julia’s childhood, she knew them by heart at that point, and felt they belonged with the mosaic that told the story.
4. You’ve said that the character of Homan was derived from a real person. Were any of the other characters based on real people?
None of the other characters was directly inspired by real people, aside from what I’ve mentioned above. But a number of details, both pleasant and sad, came from real life. For instance, while I was doing a speaking engagement in New Hampshire, I met a bus driver who told me he’d once worked at a sprawling old hotel where he drove guests in a horse-drawn carriage to a picturesque lake, where men often proposed marriage to their dates—a brief conversation that led to the section with Henry and Graciela. Another example is the whole John-Michael Malone episode, which is based on the story of Geraldo Rivera secretly visiting Willowbrook State School and then broadcasting footage taken with a hidden camera. Just as important—to me—but much less extensive in the book are the names of some places or side characters, which honor several former students of mine. They remain very dear to my heart, just as Martha’s students remained so important to her.
The most fortuitous inspiration came not from my knowledge of history or personal experiences, but from a casual conversation I had with a neighbor, Jim Moseley. Now a prominent person in the New Castle Presbytery here in Delaware, he happened to mention one day that when he was a teenager in Florida in 1969 and 1970, he was friends with Butch, an irreverent, fun-loving man who had quadriplegia and who lived life to the fullest. With another friend, they took several cross-country trips in a van, following their whims, going to wild parties, and having all kinds of grand adventures. I asked Jim if he would tell me about their experiences, and he happily obliged. The section when Homan and Sam are on the road was greatly influenced by that discussion.
5. Where can I find the Poseidon Lighthouse?
Sorry. The lighthouse is totally made up. So is the town of Poseidon. The book blends real places, like Maplewood, NJ; various towns on Cape Cod; Ithaca, NY; and San Francisco with invented places like Well’s Bottom, the Pennsylvania School for the Incurable and Feebleminded, the King and Queen’s Commune, and the Buddhist retreat.
However, the mosaic at the end of the book was inspired by something quite real and quite extraordinary: an enormous glass mosaic that was the one and only collaboration of Maxfield Parrish and Louis Comfort Tiffany. Called “Dream Garden,” it can be found in the lobby of the Curtis Publishing Building in Philadelphia, a few blocks from Independence Square. I love to bring people to see it; no one expects something so gorgeous in an office lobby, and everyone I’ve taken has been dazzled. But once, when I was admiring it with my husband, a class of students on a field trip burst into the lobby. Only a couple of students paid it any attention and none of their chaperones did, so intent were they on getting a good photo with this pretty artwork as the backdrop. The incident left my husband and me shaken, but when I reached the final chapter, I realized it provided the perfect metaphor for how many people don’t see something right in front of their eyes—the way much of society didn’t allow themselves to see institutions.
6. Was the institution in the book based on a real place? Can you tell me a little more about these places?
The institution in my book was a composite of several real places I learned about from interviews, books, and documentaries. I also visited a closed institution that changed its name over time, like the one in my book: the Pennhurst State School, which opened in 1910 as the Eastern Pennsylvania Institution for the Feeble Minded and Epileptic. As shocking as the details in my book might be, the fictional Pennsylvania School for the Incurable and Feebleminded was
typical of many large institutions for people with intellectual and developmental disabilities at similar times in American history.
I should make a distinction before I continue. Most Americans who hear the word “institution” immediately think of psychiatric hospitals for people with mental health issues. But for the last two centuries, there has been a completely separate system in America for people with intellectual and developmental disabilities. Individuals like Homan, who used unfamiliar forms of communication and whose identities weren’t known, sometimes got dumped in them as well. These places weren’t officially a secret, but so few Americans knew—and know—about them that they might as well have been.
Historians of developmental disabilities generally trace the beginning of the institutional era to the mid-nineteenth century, when Samuel Gridley Howe founded the Massachusetts School for Idiotic Children. Although he felt that “all such institutions are unnatural, undesirable, and very liable to abuse. We should have as few of them as is possible, and those few should be kept as small as possible,” public institutions quickly began to proliferate. By 1900, there were thirty-five; by 1920, 145; and, at their peak in 1970, 283. They existed in every state, and, at the time when my novel opens, housed almost two hundred thousand individuals. While a majority of the residents had intellectual disabilities, many were placed because of cerebral palsy, deafness, blindness, epilepsy, emotional troubles, and what we now call Autism Spectrum Disorder. There were also instances when people who might not have even had disabilities were sent to institutions. Research scientist Jim Conroy, who conducted a study of the now-defunct Pennhurst State School and who provided me with these figures, told me that in 1989, he found an admission record sitting on the floor of the shuttered Administration Building. It was from 1930, for an eleven-year-old boy, and the reason his father placed him was recorded as: “Says ‘poon’ instead of ‘spoon.” Like John Doe No. 24, the boy spent the rest of his life in an institution.
Institutions are not a thing of the past. When this book went to press in 2010, there were still approximately 160 public institutions in the United States, housing almost thirty-five thousand people. The first state to eliminate its institutions was New Hampshire, in 1991. Since then, a total of twelve states, including Alaska, Hawaii, Indiana, Michigan, Minnesota, New Mexico, West Virginia, and most of New England, have also closed their institutions. Pennsylvania currently has five; California, six; New York, ten; and Texas, which tops the list, twelve.
7. It seems like the tragedy of institutionalization happened for so very long in our country and very few people even know about it. What can I do to continue moving our society away from rather than back toward institutions?
Although the remaining institutions are smaller and more focused on individuals with severe disabilities, the direct support professionals I’ve met who’ve worked in both institutions and community settings were adamant that people blossom when they have the opportunity to live in houses and apartments, and with friends and families. In other words, these DSPs emphasized that when people are included in their communities, treated humanely, and with dignity and respect, they thrive. This observation alone has made them—as well as most self-advocates, family members, and professionals I’ve met—feel strongly that all institutions everywhere should be closed.
There are multiple ways you can help awareness.
Recognize that staff people like Kate are essential to the success of individuals living in the community. You can learn more about them at www.youneedtoknowme.org, where you can read stories about the kinds of devoted professionals I’ve talked to over the years. You can also read about the facts behind the tremendous and increasing need for their services, and yet why there is now a terrible shortage.
Contact state and federal leaders to tell them that you want community-based services for people with disabilities, and you support fair wages for the DSPs who support them. Emphasize that it’s more cost-effective for people like Lynnie to live in the community than in state-run institutions.
If you are not a person with a disability and are not a family member, make an effort to interact with people who are. If you find it difficult to know where to start, recognize that you’re experiencing the legacy of institutionalization, and that the long history of separate and not at all equal can end with you. Among the things you can do are invite groups in the disability community to attend events and activities you are already a part of, or volunteer for a group like Special Olympics or an agency that provides residential services. Or just get to know someone as an individual—and maybe even as a friend. As anthropologist Margaret Mead said, “Never doubt that a small group of thoughtful, committed citizens can change the world.” And, I’d like to add, that group can be as small as two.
8. If there is one thing you want people to get out of this book, what is it?
Everyone deserves to love and be loved—and to live a life of freedom and meaning, with dignity and respect.
9. I’d like to learn more about the issues behind this subject. Can you give me some helpful links?
Please go to Related Links on my website, www.rachelsimon.com.
Also by Rachel Simon
The House on Teacher’s Lane
Riding the Bus with My Sister
The Writer’s Survival Guide
The Magic Touch
Little Nightmares, Little Dreams
Praise for Rachel Simon and
THE STORY OF BEAUTIFUL GIRL
“Enthralling… Simon… has written an enormously affecting read, and provided sensitive insight into a complex world often dismissed by the ‘abled.’ ”
—Publishers Weekly
“THE STORY OF BEAUTIFUL GIRL is a beautiful story, indeed. In its sweeping breadth and textured detail lies a finely crafted testament to the benevolence and brutality of our humanity. I dare you to read the first twenty pages and not keep going.”
—John Grogan, New York Times bestselling author of Marley & Me
“[Simon’s] work is smart and laced with sweetness… [she] finds new and forgotten meaning in familiar symbols… Simon’s thorough research… is evident in her careful crafting of this moving story. Those readers familiar with her insightful memoir, Riding the Bus with My Sister, will find this new fictional work an opportune meeting of author and material.”
—Philadelphia Inquirer
“Rachel Simon is a great writer and has incredible skill at describing inner life. She is a wise soul.”
—Dan Gottlieb, author of Letters to Sam and Learning from the Heart
“This novel is the author’s gift to those who never had a chance to speak for themselves… a work of fiction committed to confronting a deeply disturbing truth.”
—Washington Post
“Slow down to savor Simon’s keen insights, humor, and evocative storytelling.”
—Newsday
“Beautifully written… captivating and excruciatingly bittersweet… Simon deserves kudos for tackling historically sensitive social issues with deft prose and an uncanny gift for characterization. These people will haunt you till the last page… For those who love The Help by Kathryn Stockett, this one’s for you.”
—Utah Daily Herald
“A touching story of human kindness and a reminder that we are all just people, regardless of our physical or intellectual limitations.”
—Fredericksburg Free Lance-Star (VA)
“One of the most powerful, heart-rending stories you will read this year.”
—Lincoln Journal Star
“Adeptly nuanced and originally wrought, [this] book explores our compassion and intolerance toward people different than ourselves… Reading THE STORY OF BEAUTIFUL GIRL will change your perception of those whose challenges differ from your own. This book will move you to a better place.”
—Seattle Post-Intelligencer
“Eye-opening… Lynnie and Homan are two people who manage not only to survive but to set themselves free.”
—Booklist
“Rachel Simon’s novel will make you shed tears—of joy… Simon’s compassion for people with disabilities shines through everything she does.”
—MainlineMediaNews.com
“The most compelling, resonating novel I’ve read in years. It is a love story, a mystery, and a visceral indictment of a once-popular way of dealing with the disabled in U.S. society… a breathtakingly beautiful, yet heart-wrenchingly aching story that, despite its cruelty and inhumanity, uplifts the reader.”
—Omaha World-Herald
“Pointedly uplifting.”
—Kirkus Reviews
“Crafting a sweeping, decades-long love story between two such characters does as much for raising awareness and enhancing compassion as any exposé ever could.”
—BookReporter.com
“An illuminating and affecting view into a unique and misunderstood love… THE STORY OF BEAUTIFUL GIRL makes a beeline for the heartstrings in capturing a seemingly impossible love story—and the secret pact that makes it so unforgettable.”
—BookPage
Contents
Front Cover Image
Welcome
Dedication
Epigraph
Part I: Hiding
The Bride’s Request: The Widow 1968
The School: Lynnie 1968
Paths Less Traveled: Martha 1968
The Hand Speaker: Number Forty-Two 1968
Inside Cinderella’s Coach: Martha 1968
Turning Pages: Lynnie 1968
The Big Drawing: Homan 1969
Accomplices: Kate 1969
Part II: Going
Samaritan Finder: Homan 1969
The History of Words: Martha 1969
Ghost: Homan 1970