Poster Child (25 page)

After the holidays, I moved to Boston with the intention of attending Harvard Divinity School. I worked with the same lingerie company and lived with friends I'd met in Dublin. Mom and Dad seemed worried but relieved to see me go.

"I'll be fine," I told them, and I briefly believed this. "I'll be too busy with grad school applications to get into trouble." But there was one more international trip I had to take.

Chapter Fourteen

SURVIVING THE BODY

In the lawn in front of the Palais des Nations in Geneva stands a giant, three-legged chair. One leg has been violently torn away, and the bits of remaining wood hang like icicles from the messy, uneven break. The symbolic wound is irreversible, the chair's original shape irretrievable. The chair is both a memorial to land mine victims and a reminder of the millions of mines that remain in the ground worldwide, waiting to kill and maim if countries fail to take the appropriate steps to remove them safely

The first time I saw that three-legged chair, I turned my head away as the bus passed, fearful of somehow being implicated and feeling guilty that I wasn't brave enough to be. Although the trauma of losing a leg to a land mine was difficult and deeply unsettling to imagine, it was the physical image of incompleteness that resonated with me. I resisted being associated with such a symbol of brokenness.

Before entering Harvard Divinity School in autumn 1998, I served as the youth intern at the Lutheran World Federation in Geneva, Switzerland, a nine-month position. I helped design programs and resources that would empower, inspire, and assist Lutheran youth and women according to the specific needs of different geographic regions around the globe. I researched the histories of ordained women worldwide; I wrote and edited newsletter articles and tracked international correspondence; I traveled to Namibia to help administrate a theological training week for youth; I worked with colleagues from all over the world.

In my application, which I had sent away for three years earlier when I returned from Dublin, I had specifically mentioned my disability, citing my interest in theological issues of embodiment. When people asked questions about my leg, I recited an updated version of the poster child speech on autopilot, even though it had long felt inadequate and now made me feel cheap and dishonestt—even weary—when I told it.

Once, after a weekly meeting, a colleague approached me. As we walked to the coffee machine, she told me that there is a word in almost every African language for disabled people that means stepped on by an elephant, a wildebeest, a bear, a god.

"I am interested in your story," she said, pouring a cup of coffee and handing it to me. "And wouldn't it be interesting to know how other women like you from different parts of the world think about God? How they live?"

I nodded, the coffee cup warm between my hands. Walking back to my office, I shuddered. I sat at my desk, holding the coffee until it went cold. I finally got back to work, but for the rest of the day I felt the shadow of those beasts looming over me—waiting to stomp and crush. I remembered hearing disabled women speaking—as if from some lost and hidden place—from the pages of a dusty, forgotten book in the corner of the St. Olaf library. I remembered those stories full of resistance and rage, truth and triumph; I remembered the insights from
The Disabled God
and how the book had literally changed my life by shifting my thinking. Looking out at the flower-filled courtyard of my workplace, I decided it was vitally important that I hear and learn from living, breathing women about how they lived; how they felt about their bodies, about God, about their place in the world. Here, in my colleague's words, was a call to action, and Geneva, a hub of the international community, was the perfect place in which to take up that call. I asked for and was granted money and space to hold a meeting for one disabled woman from each of the six regions of the Lutheran World Federation.

The women arrived during the first week of full-blown spring in Geneva. The air was fragrant with the scent of lilacs and air rinsed clean after a light rain. Bees buzzed wildly in front of the double doors of the hotel, where inside, six disabled women were gathered, introducing themselves in awkward and nervous English.

The goal of our gathering—apart from forging connections with one another—was the preparation of a document that would assist the Lutheran World Federation in making its programs more inclusive and receptive to the specific needs of disabled women throughout the world. Nancy Eiesland, the theologian I so admired, had accepted the invitation to be the special guest of the conference. She would lead us in reflection and meditation and assist with the theological language of the final document.

The first night, after everyone had gotten settled in their hotel rooms, the six of us sat around a table in the hotel conference room as Nancy led us in an exercise designed to acquaint us with one another before the week began. She passed out large sheets of butcher paper and markers and asked us to draw a timeline of our lives. Illustrating our experiences, she explained, was a way of embodying our stories; it was a physical and visual way of telling a tale that we were frequently asked to recite for others.

My first impulse was to depict myself as the beaming poster child, to paint myself as a kind of celebrity. Although I was eager to hear the women's stories, I felt that old, instinctive pull to separate myself from the group by secretly asserting or quietly insisting that I was the most normal and therefore the least disabled. I had noticed the looks from the other hotel guests and the concierge as our group gathered for dinner or slowly crossed the lobby to our conference room. As usual, I was worried to look crippled, to look different. I still wanted to be the star of any group, which meant being singled out as normal, beautiful, and bright. But as I looked around at the women at the table, I decided to take a chance. Now was the time for truth. My skin was covered in goose bumps as I began to draw. When everyone had finished, one by one we lifted the illustrated sheets of paper and explained to the others how our disabilities had affected our lives.

Ana from Argentina was first. She'd had polio as a child and now used crutches or a walker. Her approach to disability was distinctly theological: "Jesus came for the outcasts," she said. "Jesus came for the crippled and the lame." Ana was an ordained pastor serving a lively and supportive congregation; she was married and had several children. She drew herself in the wheelchair she'd used as a child. She drew her family. Her dark ropes of hair moved as she shook her head, telling her story.

Martha from Ethiopia had been disabled at birth, her foot twisted in what many believed to be an act of God. Outcast by society, she survived by the love of family, yet her life still retained in it moments of profound exile. As a child, trusted spiritual leaders informed her that her deformity was God's mark of shame, yet she resisted this classification, guided by a stronger inner conviction. "I know that I am a child of God," she said. "I have always known this." When I met her, she ran across the lobby and gave me a tight hug. "This is the best day of my life," she said. She had taken a horse, two buses, and three planes to get to Geneva. She drew an enormous church in the center of the page. "God is everything," she said. "There is no room for anything else."

Yumiko from Japan walked with a cane and a stiff leg as the result of severe arthritis that no attempted medicine or therapy had been able to resolve. A homemaker, she was integrated into her local community and had three grandchildren. She was overwhelmingly positive and good-humored, always making our group laugh and helping us laugh at ourselves. She drew herself at the center of her family.

Lizbet from Norway had longed to be ordained as a Lutheran minister, but because of her short stature, this dream was denied her. "They said nobody would listen to me because I'm too short," she explained. She drew herself tall in the picture, wearing flowing purple robes. "When I dream," she said, "I am as tall and powerful as I am in my mind." She drew a crowd of people in a circle, with herself at the center, preaching.

Then it was my turn. I had agonized over what images might accurately depict crucial moments in my life story as a disabled woman. Without mentioning the poster child title or rattling off my accomplishments, I didn't know what to render, what to illustrate. I thought of listing the dates of my surgeries and recording memories of each; I realized I had no idea when my surgeries took place. Instead, I drew my body as it had changed with each subsequent operation: First the foot was taken, then the hip surgery, the knee fusion, the way prosthetic limbs had changed with each passing year of growth and technological advancement. My hands shook as I lifted my piece of paper. It was the first time I had talked about my disability without mentioning the poster child experience. At the end of the page, I drew myself standing legless in front of a mirror. "I think my life is about running," I said, and this felt like the final piece of an accumulated awareness—an epiphany—that had been building and falling, building and falling, for many years, perhaps since the day I became the poster child. I had not made myself look or sound extraordinary. I said, "I have always hated my body," and realized that this was an accurate statement. It was so true, it nearly took my breath away. The women nodded and listened. In their eyes was understanding, empathy, and a unique kind of sisterhood—unspoken but felt—that I had never experienced before. I had never felt so terrified and free. My words did not reach back to slap me; they did not dissipate but stayed buoyed in the room with the expansive lightness of the truth.

As a child on camping trips, I would sprinkle birdseed in my hand and wait for a bird to alight. When it did, its body was always more substantial than I expected, yet remarkably light as well, the weight delicate and tender, as if I were holding a lightbulb filled with heavy hair. For a few moments as the bird's feet stepped lightly in the creases of my open palm, picking at the seed with its tiny beak, I watched its calm, hot eyes and felt the energy of its fluttering heart weighing down the hollow of my hand. After it flew away, my hand felt both lighter—free of the little body—and more grounded, as if I had been touched and rooted to something beyond me. This is the feeling I had now—in my chest, in my heart—as the day drew to a close.

That night, unable to sleep, I left my hotel room at midnight and took a taxi to my flat on Avenue de Soret. After the day's events, I craved the comforts of my own space: my pictures, my books, my clothes, my piles of letters. Lying in bed, I heard people chatting at the late night cafe below, sometimes a drunken laugh. Before dawn, I would smell the familiar odor of espresso and fresh croissants and hear the quick chatter of the morning customers. Although my fear of the dark had made it difficult for me to sleep since I had arrived in Geneva seven months before, that night I slept calmly and well. I didn't close and lock the windows or leave the lights and radio on all night as I usually did. I left the windows open to the night breeze and didn't worry about anyone sneaking in to murder me or attack me; I didn't worry about being seen. My mind raced, full of the women's stories. Why had I been so terrified of the dark all these years? Perhaps I lived in fear that someone was going to force me to speak the truth. Nobody could take my story now; I had already told it. I remembered the words of Psalm 139:
For you created my inmost
being;
you knit me together in my mother's womb. I praise you because I am
fearfully and wonderfully made . . . my frame was not hidden from you
when I was made in the secret place, when I was woven together in the depths
of the earth.
I thought of patterns and the efforts of their resistance. I imagined stepping into the shadow of a beast's—any beast's—heavy foot and coming out crushed through the ground of an experience with the proof of a vision—unique and my own—alight in my palm, a savage spinning. I put my hands on my chest and felt the perfect organ of my heart beating immaculate inside the body squashed. As the psalm promises, I felt known by a higher power—
you have
searched me and you know
me
—and known to myself.

I didn't feel peace so much as equilibrium and a desire to stop hiding the truth about my disability from others and from myself; in contrast with the way I had been living, this was a state of calm powerful enough to put me to sleep.

The week progressed with Bible study, more stories, meals, outings, and the formation of practical ideas that would help existing Lutheran World Federation structures become more accessible to disabled women worldwide. The suggestions we finalized and typed up in a conference room continue to guide efforts of greater inclusivity in LWF program planning worldwide.

On the last day of the gathering, our group met in the LWF office building. The reactions in the building varied: Some people stared; others smiled and brought cookies and coffee to the meeting room; others stood in the doorways of their offices and watched us process by; many of my colleagues engaged the women in conversations, asking them questions. Regardless of people's individual reactions, the physical presence of the women created a palpable shift in the office environment. There was a detectable change in the air, an opening and a new energy. For weeks after the women returned to their homes, I received e-mails from my colleagues telling me how their ideas about disability had changed radically All we'd done was tell the truth about our bodies without shame, without apology, and without fear.

The next time I was on the bus as it passed the three-legged chair at the Palais des Nations, I did not look down or away. I faced its broken, uneven frame and did not feel ashamed. I saw the faces of the women; I heard their voices and their stories. The broken chair told its own story and provided its own call to action. So did we. The women had their stories, and I had mine, and what we shared was a responsibility to tell them.

"Hey, look what I found." Dad placed a huge cardboard box at my feet. "Look inside."