I am writing this post from a hotel in Arlington, Virginia, where I am attending a conference of people with my genetic bone disorder, osteogenesis imperfecta (OI). OI is a collagen disorder that leads to fragile bones, skeletal deformities, and other symptoms. As I always find when I attend these conferences, the greatest benefit does not come from learning about the latest research or functional adaptations. Rather, it comes from being surrounded, as I so rarely am, with people who look and function as I do.
I have been a 4-feet 7-inches tall woman with a barrel chest, crooked legs and spine, and a limpy gait for three decades now, and I usually focus more on the demands of daily life (groceries, kid carpooling, work deadlines, puppy housebreaking) than my body’s quirks. But there is something utterly freeing about being in a room full of people who also have barrel chests and crooked bones and limpy gaits. I can let go of the veneer of self-consciousness that has become so fused to me that I usually don’t even notice it is there. At an OI conference I feel completely comfortable, in a way I don’t always feel in my regular life, with who I am.
Who I am, of course, has everything to do with this bone disorder I was born with, which has led to three dozen broken bones, severe arthritis, and untold griefs and disappointments, as well as a beautiful daughter who inherited OI, and hefty doses of wisdom, compassion, and perspective.
One of my jobs at this conference was to talk to other women with OI about the reproductive choices available to us today, particularly preimplantation genetic diagnosis (PGD), which allows us to screen for genetic disorders such as OI at the embryonic stage. During my presentation, one young woman with OI asked, “Why would someone with OI go to such lengths to make sure you won’t have a baby who is just like you?”
Her question touched on a central tension in conversations around disability:
With conditions that cause suffering, such as OI, how do we honor the understandable desire to shield ourselves and those we love from such suffering, while also honoring ourselves and our children fully, knowing that who we and they are is intimately tied to the trials, revelations, and growth of living with a disabling condition?
Christian ethicist Stanley Hauerwas has put it this way:
“How are we to rightly regard [people with disabilities] as precious creatures of God and yet wish they might not suffer from their disability?”
I put it this way:
“How is it possible that I treasure my beautiful daughter just as she is, because I do, and yet also wish that she had strong bones? How is it possible that I treasure my own life, because I do, and yet also know that, were I to have the chance to live life without these fragile bones, crooked spine, and grating joints, I would gladly take it?”
Some within the OI community, and the larger community of people with disabilities, perceive PGD and related technologies (such as prenatal diagnosis) as dangerous and threatening. They fear that such technologies will further entrench biases asserting that only those with healthy and culturally normative bodies and minds are worthy of life. I share this fear.
Yet, I also know that most parents who use PGD to screen for a disabling genetic disorder in their family history are not doing so because they believe people with such disorders are unworthy and undesirable. In contrast, many of these parents know first hand, from their own or a loved one’s experience, that life with a genetic condition can be marked by love, joy, accomplishments, and well-being. But they nevertheless wish to protect their babies from the pain—bodily, emotional, psychological—that can accompany disorders such as OI.
My oldest daughter has broken her leg walking across the living room floor. She (we) lost an entire summer—a family vacation, summer camp, carefree days on the beach—when a mid-June fall left her with multiple broken bones. While I haven’t broken a bone in years, I sometimes struggle to care for my family and home because of severe pain from arthritis, caused by years of walking on an unbalanced, crooked skeleton. I cannot fault some of my OI friends, or myself, from wanting to spare our babies these struggles.
Ten years ago, my husband and I did one cycle of PGD in an attempt to have a second child who would not have OI. The cycle failed, after which we abandoned reproductive technology and had two more children the old-fashioned way. Neither of them inherited OI, which was, to be honest, a relief. I adore all three of my children for who they are, with their beauty and flaws, and know full well that my oldest daughter would not be who she is if she did not share my diagnosis. I love the life I have, with its beauty and flaws, and know full well that I would be a different person with a different life if I did not have a genetic mutation that makes my bones fragile.
There again is that central tension:
How do we value all people, no matter their genetic or physical or mental characteristics, for who they are, and also honor our very human desire to spare ourselves and our children great suffering? How do we assess reproductive technologies that offer to do that for us, but that might also end up reinforcing cultural notions of what kind of person is most valuable and desirable?
I don’t know the answers to those questions. I do know, however, that we have to talk about these most difficult questions, and do so with generosity of spirit toward those whose opinions and experiences differ from ours.
Ellen Painter Dollar is a writer who focuses on faith, family, disability, and ethics. She is the author of the recently released book, No Easy Choice: A Story of Disability, Parenthood, and Faith in an Age of Advanced Reproduction (Westminster John Knox, 2012). Part memoir, part journalism, and part theology, the book examines the ethical questions raised by reproductive technologies, particularly genetic screening of embryos. Dollar has also written for the American Medical Association, the Osteogenesis Imperfecta Foundation, Christianity Today, and the Huffington Post. She regularly does media interviews and speaks to community, student, church, and book groups. You can learn more at her web site: http://www.ellenpainterdollar.com.
Filed under: BethesdaBlog 2012, Spiritual Life Tagged: | American Medical Association, Christianity, collagen disorder, Disability, Ellen Painter Dollar, embryos, ethical, Genetic Screening, life, osteogenesis imperfecta, people with disabilities, PGD, prenatal diagnosis, Reproduction, suffering