Poster Child (27 page)
Authors: Emily Rapp
I had had no idea that my disability was literally written into my DNA. Stories carved into wood through scars and scuffs were one thing, but a disability from the inside out? I had never considered this possibility. Although the defect was not inherited and therefore impossible to pass to my future children (there is no specifically identifiable DNA strand for PFFD), it did indicate a spontaneous mutation.
This discovery left me speechless and angry. A defect in the DNA, a twist in the genetic ladder, a chance mutation in the delicate braiding of informational strands, felt so permanent, so preordained, so
unfair.
I realized how desperately I wanted to continue passing off my disability as a random accident, as a fluke, as just, "you know, one of those things," as I used to say in my pert poster child speeches, which I had recycled in countless ways throughout my life. My disability was indeed random and accidental, but it was also
a mutation.
The word felt sticky in my mouth.
Later that night, I looked over my notes again. Because I had written them so quickly as Dr. Elliot had talked and especially at the end of our conversation, in a kind of stunned fury, there was an exchange I had originally glossed over.
"If you can create the part that's missing," Dr. Elliot had said, "why wouldn't you make someone whole with a prosthesis? It's just like anything else we might use to survive in the world."
Survive in the world.
This had and has been my daily business throughout my life. The knowledge that I could not outrun or out-achieve my own design came as a complicated relief. After all those years of overachievement, after all that work trying to physically transform my body or solve its problems intellectually, as if this would finally make it mine, it had belonged to me all along; there was no overcoming my DNA. I could not argue with the realities of creation.
"Know what I mean?" Dr. Elliot had asked.
"I think I do," I had replied. The body was not a problem or a puzzle that could be solved by the mind, in the arms of a man, in flattery and attention from strangers, in the pleasure of academic accolades, in locations far from home, at divinity school, or anywhere else. The answers were literally staring at me in the face, lined up against one wall of the garage. But did the answers give me the peace I had hoped for?
I returned to the garage for the last time. As I looked at the legs, I remembered the women gathered in Geneva who had strengthened me with the stories and ordinary facts of their existence, each of them extraordinary in some way and yet profoundly normal as well. It would be a lie to say that I found peace in my body. I did not and have not; perhaps I never will. But I did discover a sense of ownership, and I did find a voice.
There was one more thing to do before boxing up my legs. I took off the prosthesis that had walked me through the streets of Dublin and kept me standing up in Korea. I slipped it through the mouth of my shorts and hopped over to set it at the end of the row. The body wasn't meant to be solved or resolved—it was meant to speak and tell its own story, and here I was, standing on one leg before the pieces of mine. I did not feel happiness or even relief. I felt sadness mixed with a quiet resignation. I may never fully understand or even accept the body I live in and with, but it does tell a story, and that story can be told.
Finally, the only claim I can make with any certainty about my body is this: It is mine.
I am deeply grateful to the Corporation of Yaddo, the Fine Arts Work Center, the James A. Michener Center for Writers at the University of Texas at Austin, the Jentel Arts Foundation, the Mary Roberts Rinehart Foundation at George Mason University, and the Philip Roth Residency at the Stadler Center for Poetry at Buck-nell University for the financial support that provided invaluable time and space at different times during the writing of this book.
My heartfelt thanks to the following individuals: to Annik LaFarge, editor and friend, whose enthusiasm, sharp wit, intelligence, and sincere belief in this work surpassed my expectations and encouraged me each step of the way; to my agent, Esther Newberg, for her support, insight, hard work, unflinching honesty, and quick response to panicked e-mails; to Christine Earl and Kari Stuart at I CM for keeping everything in order. A writer could ask for no greater team.
I am also indebted to the editors of
The Sun
magazine, for publishing the essay "Surviving the Body" that grew into
Poster Child;
the
Atlantic Monthly,
for recognition of this work; my classmates at the University of Texas at Austin and my students in the Province-town Adult Education memoir course who read the manuscript at different stages and provided helpful direction; Charles Beneke and Viet Nguyen for careful reading; Sarah Reinertsen andjillian Weise for knowing this story; Susan Briante, Julie Gateas, Paige Kaltsas, Philip Pardi, Jeff Severs, Chris Simpson, Devon Shaw, and Betsy Wheeler for the gift of friendship and sharp editorial insight; Madalyn Asian, Caeli Bourbeau, Monika Bustamante, Kate Hill Cantrill, Kate Weldon LeBlanc, Emily Miles, Lisa Railsback, Carrie Scanga, Mira Urosev, Ryann Watson, and Jennifer Weber for humor, love, and unflagging belief in me; Paulette Bates Alden, David Bradley, Paula Closson Buck, Chris Camuto, Katie Ford, Maria Flook, Marie Howe, Denis Johnson, Shara McCallum, Naomi Shi-hab Nye, Patricia Powell, Robert Rosenberg, Brad Watson, and Joy Williams for encouragement and much-appreciated support; Nancy Eiesland for showing me a different way; Barbara Pitkin and Edmund Santurri for thirteen years of mentorship; Maria Akin, Emil Kresl, and Cristina Zambrano for making things happen.
A special thanks to Barbara Belejack, Laura Furman, Steve Harrigan, and James Magnuson for their extraordinary vision and tireless support of my work.
To Glen and Ann Rebka for your gracious and boundless enthusiasm for all of my endeavors, my thanks.
To my family—Andy, Jen, Iain, James, Lois, Abe, and B. F. Rapp, the Eigsti family, and the Gorman family; for your faithful presence in my life, thank you.
Finally, to Mary and Roger Rapp for the rare gift of unconditional love, my deepest gratitude.
These discussion questions are designed to enhance your group's conversation about
Poster Child,
Emily Rapp's poignant memoir of growing up with a congenital birth defect, and her struggle to accept her body and tell her story.
Emily Rapp became a poster child for the March of Dimes at age six. Proudly showing off her wooden leg to reporters and inspired audiences, she would announce to the crowd: "I might have one leg, but I am not disabled" (55). Born with PFFD (proximal focal femoral deficiency), which required her left leg to be amputated at age four, Rapp can barely remember life before frightening operations and ever-changing prostheses. Rapp transformed herself into a "Supergirl," compensating for her leg through feats of bravery, academic accomplishment, and self-discipline. When Rapp pushed herself to teach in South Korea as a Fulbright Scholar, her tenuous control crumbled under self-imposed pressures. For Rapp, true bravery involves looking within, discovering the unique identity beneath her fearless facade, and sharing her story.
1. Discuss the paradox, "Being extraordinary was the only way to be ordinary" (205), that ruled Rapp's life until young adulthood. How did Rapp's conference of disabled women, held at the Lutheran World Federation in Geneva, help her temper her drive for extraordinariness? What truths did Rapp finally admit at this conference?
2. Consider the events of Rapp's first Communion. How did the parable of the mustard seed, which appears, lead Rapp to challenge her faith?
3. How did the experience of becoming the March of Dimes poster child affect Rapp at age six? How does her experience as a poster child carry over into adulthood?
4. Rapp writes, "The body has a remarkable ability to displace pain. First it's in the abstract, then it's in your skin as a feeling, before it moves to your mind as a story, but sooner or later the pain ends up in your heart. And that's where it stays" (127). Relate this account of pain to the life stages that Rapp narrates in her memoir.
5. Rapp recalls thinking of her first wooden leg, "The leg felt like a part of me, like an extension of my flesh-and-blood-stump; it
was
me" (48). How does Rapp's attitude toward her prosthesis change over time? How does she feel about the old collection of outgrown prostheses she discovered in her parents' garage?
6. Before Rapp's grandmother learned of her newborn granddaughter's birth defect, she boasted, "Gorgeous baby girl, the prettiest anyone has ever seen" (9). Consider the gender difference between males and females with congenital birth defects. How might Rapp's life have been different if she had been born male? What if she had been born into another culture and another country, such as South Korea?
7. Rapp discovered skiing in the winter of 1981. How did she earn the nickname "Supergirl" (76) from her ski instructor? How did she try to live up to that nickname, both on and off the slopes?
8. Discuss Rapp's complicated relationship with her South Korean students. How did she react to the girls' self-imposed "code of sameness" (185)? How did her lonely nights of tae kwon do in the school gymnasium make Rapp feel closer to her students?
9. Rapp experienced debilitating panic attacks in South Korea, which Dr. Pavlovich diagnosed as post-traumatic stress disorder. Why did Rapp feel "for the first time in my life, purely disabled" (197) that night after her diagnosis? What does "disabled" mean, in this sense?
10. Rapp learned from her doctor that her disability "had belonged to me all along; there was no overcoming my DNA. I could not argue with the realities of creation" (225). Why was this discovery a relief to Rapp? How does this resolve the question she posed earlier in the book, "Blame . . . To whom or what does it belong?" (10)
Lucy Grealy,
Autobiography of a Face;
Nancy Eisland,
The Disabled
God;
Susan Brown, Nancy Stern, and Debra Connors,
With the
Power of Each Breath: A Disabled Women's Anthology;
Alison Smith,
Name All the Animals;
Lee Montgomery,
The Things Between Us;
Simi Linton,
My Body Politic;
Joan Didion,
The Year of Magical
Thinking;
Elizabeth Gilbert,
Eat, Pray, Love.
