No Easy Choice

A Story of Disability, Parenthood, and Faith in an Age of Advanced Reproduction

Ellen Painter Dollar

• Publisher: Westminster John Knox Press
• Year: 2012
• Print ISBN: 9780664236908
• eBook ISBN: 9781611641554
• Topic: Teologia e religione
• Subtopic: Ministro del culto cristiano

In No Easy Choice, Ellen Painter Dollar tells her gut-wrenching story of living with osteogenesis imperfecta (OI)a disabling genetic bone disorder that was passed down to her first childand deciding whether to conceive a second child who would not have OI using assisted reproduction. Her story brings to light the ethical dilemmas surrounding advanced reproductive technologies. What do procedures such as in vitro fertilization (IVF) and preimplantation genetic diagnosis (PGD) say about how we define human worth? If we avoid such procedures, are we permitting the suffering of our children? How do we identify a "good life" in a consumer society that values appearance, success, health, and perfection?

Dollar considers multiple sides of the debate, refusing to accept the matter as simply black and white. Her book will help parents who want to understand and make good decisions about assisted reproduction, as well as those who support and counsel them, including pastors and medical professionals.

1

Fear of Falling

Seeking God in Suffering and Disability

When I was eight years old, my best friend Carrie’s mom gave birth to her little sister, and I wrote in my diary, “I want to have a baby someday.” Even then I knew that my words were stunted and fuzzy representations of something massive and solid. Being a mother was not just something I wanted to do; it was who I was supposed to be.

But my genes and my bones argued otherwise. OI is an autosomal dominant genetic disorder. An autosomal disorder involves a genetic mutation that is not sex-linked; it affects boys and girls equally. All genes come in pairs, with one in each pair inherited from each parent. With a dominant genetic disorder such as OI, only one gene of the pair has to be defective for a child to have the disorder. The defective gene, in other words, “dominates” the normal gene. I have one normal gene for producing type 1 collagen, a protein that gives bones resiliency and strength, and one defective gene. Any child I conceive inherits one or the other of these genes, plus a healthy type 1 collagen gene from my husband. A child who inherits my defective gene has OI. A child who inherits my healthy gene does not have OI. So there is a 50 percent chance that any child of mine, boy or girl, will inherit OI.

Being caused by a dominant mutation, OI is often passed from parent to child. But neither my mother nor my father have OI. My OI was caused by a new, or spontaneous, mutation; I am the first person in my family to have it. The OI mutation means that my body produces only half the normal amount of type 1 collagen, leading to fragile bones, loose joints, scoliosis, muscle weakness, and slightly smaller than average stature. There are more severe forms of OI; children with these forms are often born with broken bones and have significant short stature, major bone deformities (C-shaped arm and leg bones, severe scoliosis), and dozens or hundreds of fractures. One very severe form is fatal within hours or days of birth.

Understanding my genes’ potential to wreak havoc on my children’s skeletons, I approached my desire for motherhood with a host of dark fears. I could not imagine reliving my own painful history with OI through my child—or perhaps I could, which was worse. It’s not that I was an unhappy child; my life was flooded with good fortune. When I was six months old, not yet diagnosed with the disorder that would force its way into our family, we moved to a modest white clapboard house in a friendly neighborhood, with the elementary school almost literally in our backyard. Our town boasted of quality schools, a quaint town center, and attractive colonials on quarter-acre lots. When I was young, my mother (a registered nurse) stayed home to care for us while my father worked his way up the academic ladder as a history professor at Trinity College in Hartford, Connecticut. Money was tight (my mother reminds me that she used to borrow back our allowances at the end of the month for groceries), but we had a comfortable home, food and clothes, pets, a week on Cape Cod every summer, and the reassuring presence of loving and sensible parents. Dinner was at six, the bills were paid, the cars serviced, the beds made, the garden fertile.

In February 1969, just weeks after our move to that white clapboard house, my older sister, Beth, not quite two years old, wandered into the road. My mother, with me on her hip, ran to scoop her up. I started crying and did not stop. A trip to the emergency room revealed a spiral fracture of my left femur, the result of my leg being bent into an awkward position during my mom’s street rescue. The orthopedist who treated me noticed that the sclerae, the whites of my eyes, were bluish—a common sign associated with OI, though it can also occur in healthy infants. That, combined with the fracture occurring with such little trauma and my bones appearing somewhat translucent on X-rays, led to his diagnosing me with OI.

We were very lucky that an orthopedist who knew something about OI was the one to examine me during that first visit to the emergency room. With children who have severe OI, it is obvious from birth (or now, with regular ultrasounds during pregnancy, before birth) that something is not right. But children with mild or moderate OI often look healthy. Parents like mine, who have no idea that their child has OI, bring their healthy-looking toddler to the ER, explaining that the child broke an arm or leg after a routine fall or saying that the baby has been crying a lot and they don’t know why. The discovery of a broken femur or collarbone, along with old, untreated fractures showing up on X-ray, can lead to suspicion of child abuse. My doctor’s quick diagnosis spared my parents and me that particular ordeal.

I do not remember the details of every one of my fractures—about three dozen altogether—but a few of particular menace leap out from the fog of memory. I sat down on the tiled bathroom floor, tucking my legs under me, to talk with my visiting grandmother as she brushed her hair in front of the mirror—and my femur snapped. I stepped down the small step from our dining room into our den, and my tibia buckled under me. My sister and I were playing tag in the backyard, me using crutches and wearing full-length metal leg braces. My foot slipped on the wet grass, and I went sprawling, both femurs giving way. I tripped on the phone cord and landed on my elbow, which shattered. The shattered elbow was the last one—not the last fall, but the last fall that led to a fracture. I was 11 years old, about to be saved by puberty. While OI is an incurable, lifelong condition, fractures often lessen after puberty, when bones are not quite so stressed by the rapid growth of early childhood.

In the years since then, my body has grown stronger. I still have long, shiny scars on my legs from repeated childhood surgery to insert metal rods that helped stabilize my femurs and tibias. Though I am a giant by OI standards, I stand barely four feet and eight inches tall. My barrel-shaped torso and left leg are shortened, and my right leg and my arms are the only parts of me the size they should be—together giving me an oddly squished and crooked look. My spine is curved and my joints ache, but I go about my business. I take walks. I lug grocery bags. I wear regular shoes, fitted with a small lift on the left shoe to partially correct my leg-length discrepancy. Buying shoes, any shoes I want, is still a thrill after so many years when hard-soled leather oxfords were my only choice because they were the only kind that would hook onto my leg braces. My choices are still limited to flat, supportive shoes—no high-heeled, pointy-toed boots will ever peek out from under my jeans—but having any choice at all still makes me feel a little giddy.

Psalm 51:8 says, “The bones you have broken will rejoice” (cf. KJV). These bones of mine have learned to dance, swirling in a hot dormitory attic or swaying self-consciously against my new husband on our wedding day. They have learned to climb evergreen-scented hiking paths, to carry children anchored on a hip, to dig up clots of soil to make a new garden bed. But rejoice? That they find a bit harder. They are still afraid of falling.

So much of what is hard about OI involves a loss of control. That is what the falls were, a loss of control over body that led to further loss of control as I became an invalid. My final surgeries, to replace the metal rods in my legs one last time, took place just before I entered the seventh grade. Though still and always small for my age, I had become too big for my parents to carry up and down the stairs in the hip spica casts (casts that covered the entire lower body, from chest to toes) that were standard postoperative procedure then. I whiled away my recovery on a rented hospital bed in our den, watching reruns of Maude and The Jeffersons, calling in to radio stations to win prizes, reading Seventeen magazine. I spent hours looking at the models in those magazines, leaning their softly waved blonde heads against a boyfriend’s Shetland-wool sweater, convinced I could be just like them—from the clear skin and shiny hair to the boy to lean on—as soon as I got rid of all this plaster. Until then, I had to call for help when I wanted to change the channel, when I wanted to wash my hair, when I wanted a snack, when I had to go to the bathroom. In the years that followed, the fractures receded. No more plaster, no more hospital beds. I could pee when I wanted.

I began to cherish the control I had, the freedom from having to ask for help. And I became terrified of losing that freedom again. The fear of falling remained, quite literally, in my bones.

From my first day of seventh grade—even though I arrived weeks after the school year had started, still recovering from surgery, in a wheelchair and with a cast—I was okay. I knew I looked different from everyone else and wished I didn’t, but I was okay. Once I recovered from that final operation, I stopped breaking. Wheelchairs, spica casts, and hospitalizations faded into unpleasant memories. One day in eighth grade, I went to school, put my crutches into my locker, and never used them again.

But though my body no longer broke, it screamed out my fragile history every time I walked across a room, swaying side to side on mismatched legs, one nearly two inches shorter than the other. Every summer I donned shorts and bathing suits, feeling vulnerable as an earthworm crawling across a driveway in the hot sun, with my scars and wobbly, toneless flesh for all to see. When I posed for a picture with my friends, I tried to use my long arms—one part of my body that appeared unaffected by OI—to hide my crookedness, the right hip that jutted out too far, the spine that crumpled down onto my hips.

I navigated being a teenager by adopting a contradictory mix of shame and defiance. I was convinced that everyone noticed my scars, skinny legs, and lumpy back before noticing anything else, every single time they saw me. But I always accepted invitations to coed beach trips where my imperfections would be on full display. I tried out for every drama production in high school, knowing I would get some bit part as an old lady or a bystander, and yet did well enough when trying out for the lead role in the musical Oliver! that the director included me in the final callbacks. I did not get the part, and circumspect comments from a favorite teacher hinted that my inability to convincingly play a robust, able-bodied young boy affected that decision. Though I suspected, and experience seemed to confirm, that most young men would have a hard time seeing a tiny, crooked, and limping girl as anything but a trusty sidekick, in ninth grade I insisted that my first crush, a good friend, meet me after school one day for a grueling conversation to confirm that he didn’t want to date me. As a high school senior, I approached another friend at his locker one morning to invite him to our prom, determined that I wouldn’t sit at home on the big night.

On the rare occasion when someone made an issue of my disability—as with the failed attempt to play Oliver or when a classmate referred to me as a “cripple”—both male and female friends defended me graciously. But when I think of those years, I picture myself on the periphery, always the observer. One year I went bowling with girlfriends on Valentine’s Day because none of us was dating anyone. I felt incredibly lucky that night because I could pretend, for a few hours, that my friends and I were the same. We were just a bunch of girls temporarily without boyfriends. I could forget that being without a boyfriend was not temporary for me, but always. That’s how it was in high school, in college, and when I moved to Washington, D.C., after graduation.

In college, one of my closest friends started dating a young woman who was part of the Christian fellowship group that was our social center. She was no great beauty, but oh, how I envied her feet. When we all dressed in shimmery dresses and shoes for a spring dance, I looked longingly at her slim feet in their royal blue pumps, the slight prominence of her ankle above the soft leather, the little rounded bump at the top, over her instep. Such lovely structure in those feet. Even in black dress shoes, my feet were clumsy, flat, collapsed. The plastic braces I wore distorted my shoes; they were no longer the sleek and refined things their designer had meant them to be. I was convinced that my life would be different with prettier feet. Would my friend have loved me instead of her if my feet were different? I felt sure that he would have.

My life has been abundantly full. I have a painful disorder, but I have also had access to excellent medical care. I had many lonely and sometimes hopeless years when I was certain no one would ever choose me as a partner, but I always had a supportive family and fabulous friends. And I did eventually get married to the person I would rather be with than anyone else in the world.

Yet all that good fortune, while certainly making life better than bearable, does not cancel out the significant pain, physical and otherwise, that OI brought me. How am I to view that pain in light of my Christian faith? Does it have any meaning that I need to pay attention to? Is OI a reflection of God’s will for me, my particular cross to bear? Or does God desire my healing as much as I do? Questions like these come to all believers at one point or another; all human beings know pain. Given the very tangible suffering that many people with genetic disorders live with, including both physical pain and social stigma, these questions take on special urgency for Christians considering whether it is ethical to use reproductive and genetic technology to avoid having children with genetic anomalies.

Genetic Disorders and the Nature of Suffering

Writer and theologian Amy Julia Becker, reflecting on whether her daughter with Down syndrome will still have an extra chromosome 21 in heaven, believes she might, “because any aspect of that extra chromosome causing separation—physical, emotional, relational—will be overcome.” In Becker’s experience, her daughter Penny’s Down syndrome has caused little intrinsic suffering or disability. Yet Penny lives in a culture that insists on seeing her as sick and flawed, even though her daily life is hardly different from that of any other preschooler. Becker insists that “much of the alienation and stigma people with disabilities experience is a product of societal norms rather than of problems intrinsic to the disabilities themselves.” She concedes, however, that while her daughter has suffered little, children and adults with some conditions do indeed suffer a great deal.

Likewise, theologian Stanley Hauerwas acknowledges how our perception that people with disabilities suffer greatly is skewed by cultural assumptions valuing independence and self-sufficiency over dependence and need. Hauerwas believes that the inability of people with mental disabilities to hide their neediness makes others uncomfortable and that the diagnosis of “‘retardation’ might not ‘exist’ in a society which values cooperation more than competition and ambition.” Hauerwas, however, refuses to reduce all disability to social perceptions; he asserts that people with disabilities have significant needs that must be acknowledged and accommodated. He also argues against the claim that suffering is only in the eye of the beholder (that we suffer only because we have mistaken ideals of what we really need to flourish and that all suffering has meaning if we just have the insight to discover it). But he also wonders whether “too often the suffering we wish to spare [children with disabilities] is the result of our unwillingness to change our lives so that those disabled might have a better life.”

When reading Becker and Hauerwas, I am aware that OI is a very different disorder than Down syndrome or other cognitive disabilities. (Some people even wonder if it is problematic to discuss “disability” in general when there are such degrees of disability and when physical and intellectual disabilities, in particular, are so different from each other. I will address this question later in this chapter.) With both physical and mental disabilities, some suffering is rooted in societal response rather than intrinsic pain; as a teenager and young adult, I suffered much more from having a body that failed to meet cultural norms of beauty than from fractures and pain. But up until puberty, fractures and surgeries brought real and brutal suffering into my life and my family’s life. Any day could be interrupted by an excruciating fracture, followed by harrowing hours in the emergency room, months in plaster casts, and the countless indignities that came with them—bedpans and extra-large Velcrofastened underpants and being stealthily stalked by gaping, curious children in the department-store sock aisle. Having OI meant sitting on a plastic sled on a Cape Cod beach, my casted leg wrapped in a waterproof trash bag, and forfeiting my starring role in the fourth-grade puppet show because I broke my arm the night before. Rodding surgeries meant weeklong hospitalizations, burning pre-op injections in the buttocks that I dreaded more than the surgery itself, postoperative pain and nausea, blood-soaked plaster casts, and being left alone after visiting hours ended at 8:00 p.m. and my exhausted parents went home to care for their other two children.

So while I agree with Becker and Hauerwas that we must be cautious about equating neediness and genetic difference with suffering, I am also interested in finding out what else my faith has to say about suffering and whether it is ever reasonable for Christians to try to avoid a particular kind of suffering by using increasingly sophisticated medical, reproductive, and genetic technologies. In other words, what does God have to do with the snap of bone, the spiritand body-withering days spent in plaster, the disappointments and exclusions that always took me by surprise when they really should not have? What does God have to say about my desire to spare my children these agonies?

Christian Perspectives on Suffering

In my ongoing research and conversations about God, suffering, and disability, I have come across three broad Christian narratives on the origins and meaning of suffering caused by illness, disability, and disease.

First is the idea that suffering is something God either proactively orchestrates (suffering as a fundamentally good thing that God gives for good reasons) or passively allows (God does not cause the suffering but allows it to happen to further some ...

Table of contents

• Cover
• Half-title Page
• Title Page
• Copyright Page
• Dedication Page
• Contents
• Acknowledgments
• Introduction: Making Choices When There Is No Easy Choice
• Chapter 1: Fear of Falling: Seeking God in Suffering and Disability
• Chapter 2: Setting Out: Desire, Vocation, and Choosing to Have Biological Children
• Chapter 3: Without a Map: The Blessings and Burdens of Choice
• Chapter 4: The Slippery Slope: When Money and Medicine Meet at the Fertility Clinic
• Chapter 5: What Is Lost along the Way: Reflections on Embryos
• Chapter 6: Where We Ended Up
• Chapter 7: “The Only Way Is Hard”: A Christian Approach to Reproductive Technology
• Notes
• For Further Reading
• Index