by Rachel Simon
Julia bit back her lips. She lifted up the yellowed newspaper, thinking of how much the words did not say. She ran her finger over the grainy photo, then placed the obituary back in the folder.
There was one more item inside: a small, sealed envelope. On the outside were the words “To my beloved Julia.” It was Grammy’s familiar penmanship, but with the jagged look that her script had taken on at the end. Julia opened the envelope with trembling hands, and the scent of Grammy’s hand lotion came into the air.
“My sweet Ju-Ju,” the letter began. Julia heard herself sigh at the sight of Grammy’s name for her. “One night, two strangers gave me a child I love with all my heart, and our life together has taught me so much I never knew I was missing. Now I realize that our bond has taken me one step further: Although for a long time I only called myself your grandmother, I now understand that in my soul, I truly am, and will always be, your grandmother. Even after I have passed away, you have only to look in the face of anyone you love and you will see me. I am here for you always.”
Julia held back her tears. Finally, when she lifted her eyes, she saw Edith working across the room. “Who made the mosaic?” was the only thing Julia could think to say.
“An artist designed it,” Edith said. “Her husband did the acoustic technology. Then the collective put it together.”
“And this wife and her husband—what were their names?”
Edith lowered her gaze to the box.
“The man’s name was Homan Wilson. And the artist was Lynnie Goldberg.”
“That was my mother,” Julia said with a sob she couldn’t hold back. “So Homan must have been my father.”
“Actually, they still are your mother and father,” Edith said. “Would you like to have their address?”
Lynnie woke in the morning, inhaling the salty ocean air as she always did, feeling the warmth of Homan’s body as he slept beside her. They often told each other how much they loved these waking-up moments, when they would snuggle beneath their soft sheets, deciding whether to have eggs or cereal for breakfast, watching the sunlight on their ceiling as it reflected the sea like diamonds. But he was not awake just yet, so while Lynnie waited for him to stir, she passed her gaze over the room. Every sight gave her pleasure. The cabinets, which he’d built and she’d painted. Her framed drawings on the walls, his computer on the desk. And the window, with its curtains blowing in the breeze and its view of the lighthouse tower.
Later today, when she looks out the front windows onto the beach, she will see a woman and a young boy emerge from the dunes. They will walk across the sand toward the keeper’s house, their curly hair catching the rays from the sun. They will ring the doorbell, and the colored lights will flash.
But the day began just like the most ordinary of mornings.
Lynnie felt her husband rest his arm on her waist, letting her know he was awake. Smiling, she rolled over to face him. Hi, she signed.
His lips parted wide, and he broke into a smile, too. Good morning, Beautiful Girl, he signed back. Then he reached out and touched what had once been her dream self, but was now solid and real before him. He shook his head, still amazed that they were together, and brushed her hair off her face. And then he added, as he always did, Can you imagine a better day than this?
Author’s Note and Acknowledgments
Like many siblings of people with disabilities, I first heard about institutions as a young child. My sister, Beth, had an intellectual disability, and my parents would talk about how some children like Beth were “put away” in institutions. They didn’t elaborate but were emphatic that Beth would not live in one. Their reasons were personal: When my father was a child during the Great Depression, and his widowed father grew too poor to support his sons, my father and his brother were put in an orphanage. Though they were reasonably well treated, my father told us, over and over, “When you live in an institution, you know at the bottom of your heart that you’re not really loved.” So my sister was raised at home, and I knew nothing about the alternative.
My first awakening came when Beth and I were entering adolescence. It was 1972, and one day when we were watching TV and the evening news came on, we saw a special report by a young Geraldo Rivera. With the help of a stolen key and hidden camera, he’d entered the Willowbrook State School. The images he smuggled out horrified us—and the nation.
Twenty-seven years later, as I was writing a book about my life with Beth, I learned that media exposés like Rivera’s had led to the closing of many institutions, which in turn led to a movement to create an inclusive society. It also led to a major civil rights development known as self-determination: the idea that people with disabilities have a right to make choices about their own lives. Not until my book Riding the Bus with My Sister came out, and I was invited to give talks around the country, did I begin to learn about institutions. At almost every talk, people came up to me who’d lived in, worked at, or were related to someone who’d been in an institution, or who’d fought to get an institution to close. I was deeply moved by their stories, which were often about struggle, sorrow, and frustration, and I came to feel remorse that institutional tragedies had unfolded in a parallel universe that even I, a sibling, hadn’t known about. Finally understanding that there was a secret history in our country that had been kept out of sight for so long, it was essentially out of mind, I began reading whatever I could find on the subject, though I found disappointingly little.
Then one day, after a talk in Itasca, Illinois, when I was browsing through vendor exhibits, I came across a book with a compelling title: God Knows His Name: The True Story of John Doe No. 24, written by a journalist, Dave Bakke. The cover had a photo of a young African American man who looked frightened; the description said it was a true story, re-created from research and interviews. I bought the book and finished it before I’d boarded my plane.
This is the story I learned. One morning in 1945, police found a young deaf man, approximately fifteen, wandering in an alley in Illinois. No one understood his signs, and he seemed to be illiterate. Rather than bring him to a nearby school for the deaf or print notices in the paper that a missing teenager had been found, he was labeled feebleminded and sent to an institution, where he was given a number because no one knew his name. After a period of rage, he took on a sense of responsibility. Staff came to like him, with many coming to feel he had no mental disability. But their concerns went unheeded, and when efforts were made to communicate in American Sign Language, he didn’t respond. Were his signs in a different language? Had he never received an education, a fate that befell many poor black people in that era? No one ever knew; he remained in one facility after another until his death almost fifty years later.
My heart broke as I finished the book, and I couldn’t stop thinking about this man. Who was he? Whom had he loved, and who had loved him, before he got trapped? Why had no one come to find him? What might have happened if he’d come to love another resident? What if he had escaped? Would he have eventually found language, a home, and an awareness of his rights? Would he have become happy?
I couldn’t change history, but I wanted to give John Doe No. 24 the life he’d never had.
For a while, though, I held off starting this book. I knew that, as a hearing person, I could only approximate the way someone like Homan (as well as Lynnie) would view the world and express his thoughts. I understood too that the voices of people with disabilities have been suppressed throughout history, and that if their stories were told at all, it was by such outsiders as medical professionals, officials, or family members. Yet John Doe No. 24 wouldn’t leave my mind; his story had become too important to me. Eventually the value of paying tribute to him, and all those who were put away, made me hope that with research, interviews, and, when necessary, imagination, I could come close to doing him, and Lynnie, justice.
This book therefore incorporates details from many people I’ve met, including former residents and staff of institutions; residents an
d direct support professionals in group homes and senior care facilities; friends, acquaintances, and relatives of people with disabilities; disability studies scholars; and my sister, Beth, and her boyfriend, Jesse. It also draws on numerous historic news reports and books and a visit to the closed Pennhurst State School.
My interviews with self-advocates and people who once lived in institutions tended to be informal and impromptu, and I did not always record names, so I will extend my gratitude by naming a few of the conferences where I had helpful conversations: Everyday Lives, in Hershey, PA; the New Jersey Self-Determination Initiative, in Edison, NJ; PEAK Parent Conference, in Denver, CO; Indiana’s Conference for People with Disabilities, in Indianapolis, IN; and the Community Residential Support Association, in Yakima, WA. I also learned a great deal from individuals who receive support from Keystone Human Services in Pennsylvania. Others who offered insights about life as a person with a disability, a family member, a friend, or an activist include Katharine Beals, Susan Burch, Allison C. Carey, Vicki Forman, Dan Gottlieb, Kathleen McCool, Jim Moseley, Nick Pentzell, and members of the Sibling Support Project and the Sibling Leadership Network. My friendship with the late Bethany Broadwell was also deeply helpful, in ways too numerous to list. I miss her dearly.
My interviews with the following professionals were invaluable: Nancy Grebe and Robin Pancura, who worked at Pennhurst; Frederika Ebel, Michael McClure, Tracey Schaeffer, Bill Gingrich, Nancy Greenway, and Wade Hosteder, who are or have been direct support professionals; Lillian Middleton, who is a personal care assistant; the staff at the assisted living facility where I have been a hospice volunteer; Dennis Felty, Charles Hooker, Ann Moffitt, Janet Kelley, Michael Powanda, Joanna Wagner, and Patti Sipe, of Keystone Human Services, who permitted me to visit their group homes; Dr. Paul Nyirjesy of Drexel University College of Medicine, who talked me through details about Lynnie’s pregnancy; Karl Williams, who shared memories of working at an institution and assisted the famous self-advocate Roland Johnson in his autobiography, Lost in a Desert World; Beth Mineo, of the University of Delaware’s Center for Disability Studies, who talked with me about selective mutism and physical aspects of speech; and William Gaventa, of the Elizabeth M. Boggs Center on Developmental Disabilities, who provided insight into the theology of disability.
I was fortunate to have had guides who assisted with geographic details: David Hoag, Susan Hoag, Joey Lonjers, Cece Motz, Julie Hiromi Nishimura, Rob Spongberg, and Harriet Stein. My visits with Ginny and Eliza Hyde, and my discussions with Lauren Lee, helped me enrich the sections on Martha and Julia. Wil and Sylvia Cesanek supplied me with numerous books about and replicas of lighthouses.
Among the resources that proved enormously helpful were the documentary films Without Apology, by my friend and fellow sibling Susan Hamovitch, and Through Deaf Eyes, by Diane Garey and Lawrence R. Hott; and these books: Inventing the Feeble Mind: A History of Mental Retardation in the United States, by James W. Trent Jr.; Minds Made Feeble: The Myth and Legacy of the Kallikaks, by J. David Smith; Raymond’s Room: Ending the Segregation of People with Disabilities, by Dale DiLeo; and Unspeakable: The Story of Junius Wilson, by Susan Burch and Hannah Joyner.
I produced the first chapter of this book for Bonnie Neubauer’s birthday, and her faith in the project from that day on saw me through the next few years. Beth Conroy and Mark Bernstein offered encouragement and information early in the process. As the writing progressed, Anne Dubuisson Anderson gave reassurances, perceptive readings, and as much hand-holding as I needed. Mary McHugh provided loving insights and literary cheerleading. Marc Goldman ensured I never lost sight of the value of what I was doing. A number of my former students also provided inspiration by inviting me to their weddings, introducing me to their children, telling me about their publications, sharing the struggles and triumphs of their careers, asking for my advice on their writing and lives, and simply—no, wonderfully—staying in touch.
Infinite appreciation goes to my agent, Anne Edelstein, for her editorial savvy, sparkling enthusiasm, natural warmth, and plain old friendship; and to Anne’s assistant, Krista Ingebretson, for her cheer and generous support. You are the team that keeps me going; I could not climb these writing mountains without you.
I feel blessed to have had this book land at Grand Central Publishing. My editor, Deb Futter, immediately embraced it with the kind of wholehearted excitement that all writers dream of. Then she gave incisive editorial suggestions that strengthened the story in every way. Dianne Choie, her assistant, handled hundreds of details with efficiency, competence, and the most pleasant of personalities. Anne Twomey designed an exquisitely haunting cover. Leah Tracosas and Sona Vogel steered me gracefully through the copyediting process. And the sales team—true lovers of the written word and champions of books—gave my characters, and those who inspired them, the hope they’d always yearned for: that their story would finally be known by the world.
As always, my hugest thanks go to Hal. My Blue, my Buddy, my lighthouse man.
Reading Group Guide
Discussion Questions
What did you learn that you didn’t already know about the history of people with disabilities and the ways they were routinely treated by society? What did you learn about how people with disabilities might live today? Consider the lives of people you know who have a disability. Did the experiences of Lynnie and Homan change or shed light on your understanding of them?
Martha’s former students provide her with support for the first several years of Julia’s life. Was there a teacher in your life who meant as much to you as Martha meant to her students?
Why do you think Martha took on the incredible responsibility of raising another woman’s child instead of contacting proper authorities? What would you have done in her place?
At the time when Lynnie was a child, it wasn’t uncommon for parents to place their children with disabilities in an institution. Do you know any people who had a child who was like Lynnie at that time? What choice did they make for their child, and how did that decision play out in their lives?
Kate breaks rules for Lynnie, doing such things as letting her draw pictures in her office and giving her a private place to see Buddy. When is it appropriate for professionals to go against official policy?
Lynnie does not want Kate to go in search of the baby and Kate says she will honor Lynnie’s wishes. What do you think of Kate’s decision to do this? Kate also secretly goes against Lynnie’s wishes, but does not tell her. Was this the right thing to do?
Homan is up against incredible odds in making his way in the world, especially once his uncle Blue dies. Discuss the way that race, impairment, illiteracy, and institutionalization play a part in how he interacts with the world and how the world reacts to him.
Homan does not have a mental disability, yet he gets stuck in an institution for those who do. When he’s out in the world, people often shout at him, as if that will help him understand or even hear them. Discuss an interaction you’ve observed between a person with a disability and someone he didn’t know, where incorrect assumptions made real understanding impossible.
Homan realizes in the faith healing scene that he isn’t so sure he wants to be “fixed.” Why does he have so little interest? Sam also does not pursue healing, and the subject of being healed never even comes up for Lynnie. What do you think Rachel Simon is saying through her characters’ indifference to being “fixed”?
What do you think happened between Sam and Strawberry that led him to cry, and then to lose his interest in the free-wheeling life he and Homan had been living? Why do you think the man in the house at the top of the long front steps closed the door in Homan’s face?
When Julia is a baby in the stroller, Martha thinks about the history of words like “pajamas.” Later, when Julia is nearing school age, she collects twigs that she uses to spell words. How do these references to language foreshadow what happens to Julia as a teenager?
Do you think Julia’s lack of kn
owledge about her parents plays a role in her emotional development as a teenager, and as an adult? Was it right for Martha not to tell her the truth?
How does art create links between the characters throughout the book, and what is the role it plays in the final chapter?
In the Author’s Note at the end of the book, readers learn that the character of Homan was based on a real person. How does this knowledge affect your experience of the book?
Each character has a relationship to spirituality. Discuss how and if each changes over time. What do you think Rachel Simon was trying to say by including this aspect of all the characters’ lives?
Discuss the symbolism of the lighthouse man. Is it meant to be taken purely literally, or is there a metaphoric aspect to it as well?
Rachel Simon has said in interviews that the character of Homan follows a journey that has some overlaps with the episodes Odysseus went through in The Odyssey. What similarities do you see between the stories of Homan and Odysseus? Does The Story of Beautiful Girl conjure up other myths, folk tales, or fairy tales? Were you reminded of any Biblical stories?
Romantic relationships between characters with disabilities are rare in fiction. How is the romance between Homan and Lynnie like the romances of characters in fiction who don’t have disabilities? How is it different?
The Story of Beautiful Girl is ultimately a story about love—romantic love, familial love, and the love between friends. In what ways are the characters of the novel transformed by love, both given and received?
The epigraph of the novel is “Telling our stories is holy work.” Who does the “our” refer to in this book? What other groups of people can you think of whose stories have been hidden from society?
Q&A with Rachel Simon—Spoiler Alert!
1. Lynnie and Homan are characters who are seldom found in fiction. Even more rare is a story in which the reader gets to view the world through the eyes of a character with disabilities. Was it difficult for you to put yourself in their place?