| Abstrakt: |
This essay analyzes a controversy involving Amelia (Mia) Rivera, a three-year old girl who was denied a life-saving kidney transplant in January 2012. As reported by Mia's mother, Chrissy, on her blog post, Mia was denied the kidney transplant because of her mental disability. Throughout the public discussion that took place over a few short weeks, we argue Mia's ineligibility was rearticulated through rhetorics of motherhood, unjust body language, and questions about medical authority. we suggest this indicates that descriptions of the body and its able-ness carry more weight in the public's understanding of health issues than does medical authority. On Thursday, March 8, 2012, the New Jersey Senate health committee "unanimously approved a bill that penalizes any New Jersey hospital for denying people organ transplants solely because they have an intellectual or developmental disability" (Livio para. 1). The introduction of this bill to the New Jersey Senate was prompted by a controversy that took place in January of 2012 regarding the denial of a life-saving kidney transplant to a mentally disabled three-year-old girl, Amelia (Mia) Rivera. Three-year-old Mia suffers from Wolf-Hirschhorn syndrome, a rare genetic disorder in which missing chromosomal material causes mental disabilities. For those afflicted with Wolf-Hirschhorn syndrome, it is not typical to live past the age of two. Mia's parents, Chrissy and Joe Rivera, were informed by doctors that without a kidney transplant Mia would not survive six to twelve months. Upon receiving this news, Chrissy and Joe went to the Children's Hospital of Philadelphia (CHOP) for what they expected to be a meeting preparing them for Mia's transplant process. To Chrissy and Joe's dismay, the "what to expect" presentation instead revealed that Mia was no longer a candidate for the transplant surgery, specifically because of her "mental retardation" (Rivera para. 4). Two days later, Chrissy blogged about the meeting and indicated that not only did the CHOP physician refer to Mia as "mentally retarded" but that CHOP also dismissed their request to bypass the transplant list if the Riveras could find their own donor. In other words, even if the Riveras had a family member who wanted to donate a kidney to Mia, the hospital would not perform the operation. Within days, public outrage ensued, sparking over 50,000 individuals to take action by creating an online petition on change.org (Stilwell). Eight months after their initial decision, "the hospital reversed its earlier decision not to allow the procedure because she is cognitively impaired" (Stilwell para. 1) and in July 2013, Mia received one of her mother's kidneys in a "life saving operation" (Gorman para. 7). In this analysis we suggest that the online discussion by various publics about Mia's in/eligibility to receive a kidney transplant provides scholars a unique opportunity to investigate how discourse about the body and its able-ness ignites public controversy. The dialogue surrounding this individual case served as a catalyst for a secondary discussion about inappropriate language used to describe disabled bodies and the perceived values of the medical establishment. Throughout the discussions that took place over a few short weeks, Mia's ineligibility was rearticulated through rhetorics of motherhood, descriptive language about the body, and questions about medical authority. More specifically, we argue that an analysis of the persuasive strategies of the aforementioned themes demonstrates a public tension over who has the authority to define quality of life and determine what bodies are eligible or ineligible for life-saving procedures. Chrissy Rivera's confrontational motherwork 1, the revelation of unjust language about Mia's body, and presumptions about medical authority work together to articulate eligibility specifically for Mia; and, indicate that the language used to describe the body and its able-ness are more important in the public's understanding of health issues than is strictly medical authority. In order to demonstrate this, we first highlight texts that contributed to the public discourse surrounding Mia's controversy and justify why they are representative texts to analyze. Following a brief outline of scholarship that provides the theoretical frame for this analysis, we provide a close textual analysis of the selected texts and illuminate themes of confrontational motherwork, unjust language about the body, and questions about medical authority. Finally, we pull together the themes in order to understand how they work together to create a rhetoric of eligibility not just for Mia, but more broadly for the disabled body in contemporary society. [ABSTRACT FROM AUTHOR] |
