Surgically Shaping Children: Technology, Ethics, and the Pursuit of Normality

3. My Shoe Size Stayed the Same: Maintaining a Positive Sense of Identity with Achondroplasia and Limb-Lengthening Surgeries

c h a p t e r t h r e e My Shoe Size Stayed the Same Maintaining a Positive Sense of Identity with Achondroplasia and Limb-Lengthening Surgeries Emily Sullivan Sanford, B.A. I was 111 ⁄2 years old when I began my first limb-lengthening procedure, commencing a six-year-long process that would end with my gaining 11 inches of height; a proportionately sized body; two torn anterior tibialis tendons as surgical complications; and sixty scars.Several months before I began,I sat with an adolescent girl who had finished allthreeprocedures,withoutcomplications,andlistenedasmyparentsandotheradults inquired about her experience. Every time she was asked about her life before the surgeries ,her expressions ranged from uncertain to indifferent.“I really don’t remember . . . I’m just so glad I could have the surgeries cause life’s easier now.” This made me, the prepubescent child,very uneasy.How could she not remember?Although I could make no assumptions about her upbringing, I knew my own had left me very aware of my condition, so I considered it an essential and positive component of my identity. Limb-lengthening surgeries cannot cure achondroplasia.All achondroplastic people will be affected by their condition throughout their lives. Doing limb-lengthening to erase the effect of achondroplasia on the child’s sense of identity is dangerous, leaving the child ill-equipped to face the challenges posed both by the procedures and by the rest of her life. All parents undoubtedly wish to expose their children to as little pain as possible. But everyone’s life is indeed painful, and both having achondroplasia and undergoing limb-lengthening surgeries inflict pain on a child. However, an achondroplastic child is not stuck in a catch-22 scenario. On the contrary, she can transcend the su- ffering that goes with being designated as abnormal.A parent’s responsibility is to recognize and then show his child how she can deal with pain and potential difficulties constructively. A strong sense of identity is what an achondroplastic child needs to grow to become an individual who is as, if not more, confident than her peers. In this chapter I analyze how my personal experiences have brought me to this conclusion. Neither my achondroplastic condition nor my experience with limblengthening makes me an authority on any of the issues discussed in this book; however, I hope that my reflections on my experience will be helpful both to others who are contemplating particular surgeries like the ones I had and to those who are grappling with the more general questions posed by such surgeries. Like many others in this volume,I strongly recommend that parents delay decisions about limblengthening until the child is aware of her identity as a dwarf, and can voice an opinion and participate in the decision regarding this potential alteration of her body and thus her identity. Achondroplastic Identity in Childhood Georgia O’Keeffe once said,“When I was born and where and how I have lived is unimportant. It is what I have done with where I’ve been that should be of interest.” Perhaps it is my artistic identity as a writer that compels me to quote a painter more readily than the president of Little People of America (LPA). As implied in O’Keeffe’s words, not a single dwarf on this planet will experience her condition in the exact way I have because, while achondroplasia may be genetically caused, it is environmentally conditioned. The huge number of environmental variables across communities and homes help to shape very different experiences for different people. Although my experiences are different from the experiences of other people with achondroplasia, I know that I am not alone in concluding that achondroplasia has had a positive impact on my life. From my upbringing in the face of achondroplasia, I have always considered myself different and fortunate because of that. Who can say her personality was shaped by her normality? Two days after I was born, the doctor explained to my parents that I had dwarfism.“No one has a normal body,”he said to them,thank goodness.“Everyone is different, everyone has biological mistakes. One person has certain allergies, another has bad knees, another deals with chronic rashes. Her mistake is just more noticeable than other people’s.”A mistake? My mother says she saw the maturity necessary to understand the unreliability of life slowly being...