Abstract

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.

1. Constructing a Text

Chronologically, the controversy over Mia's in/eligibility began with Chrissy's 2 blog post after Chrissy and Joe's 2012 meeting with the CHOP physician and social worker. Public discussion about the event occurred in the subsequent response section of her blog, other Internet websites, and special interest blogs. In this study, we draw from textual discourse on various Internet web sites and blogs. We collected articles via Google alerts set on the phrase "Amelia Rivera denied kidney transplant." The variety of sources used, from Chrissy's Brick Walls post, to CNN and ABC World News reports, to organizations such as Not Dead Yet, reflects the wide array of voices from individuals and institutions who are sympathetic to Mia's story and the issues surrounding it. The rhetorics of eligibility made explicit in public articulations about Mia's situation illustrate how arguments over the body are instructive in the public's understanding of health issues. These sources provide a representative example of the complexity of arguments that speak to the physical, political, and textual distinctions of the body, which make up a network of both figurative and literal meanings for the disabled body in particular. These expansive texts allow us to see that this case was about more than just Mia, but, more importantly about authority in deciding quality of life issues and the ways in which different publics might interject their voices into the conversation. For example, Chrissy's original blog post demonstrates the way a rhetor invokes ethos-building strategies that prompted a secondary public discussion about quality of life issues. Other publics, including special interest bloggers who were sympathetic to Mia's story, also assert authority over defining quality of life and other issues of the body by challenging medical authority. Although all of these publics represent various stakeholders in this particular case, each demonstrate the constitutive struggle over who has the authority to define quality of life. Collectively, the variety of responses form the text used for the purpose of this analysis.

2. Body Rhetoric

Rhetorics of the body are deployed in public discourse to rearticulate eligibility. Much has been written about quality of life. Brown and Brown assert quality of life as a model of practice; Lutz examines the ways in which disability influences quality of life; and Yoong and Koritsas study the quality of life of caregivers for adults with disabilities. Kafer analyzes the quality of life argument from both the doctors and parents of Ashley X, who "was diagnosed with 'static encephalopathy' a few months after her birth" (47). In the case of Ashley X, the parents and doctors agreed to stunt her growth and puberty development in order to make her physically easier to care for and improve her quality of life during the care by her parents. Although much has been written about quality of life, this essay is concerned specifically with defining quality of life arguments in rhetorics of (dis)ability when there is a tension between public definitions and medical authority. In other words, we are interested in understanding how various publics assert authority in who gets to define quality of life.

This essay is also concerned with defining quality of life in regard to (dis)ability. There is significant scholarly work in disability studies that articulates reclaiming psychosocially disabled voices through creative pronoun usage (Price), how the "abled body" gets perpetuated as the "normal body" through rhetoric (Cherney), and understanding the disabled body at the intersection of feminism (Caeton; O'Donovan) and transnationalism (Soldatic & Grech); however, in order to articulate how the controversy about Mia's body 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, we work from a theoretical framework that understands the body as a source and site of argument (Jordan; Hauser; Russell).

Discourse about the body is persuasive in that rhetorical constructions help a public make sense of bodies based on able-ness, or lack thereof. Public discourse continuously shapes and re-shapes body rhetoric by invoking arguments about the body. Jordan offers an excellent example of the fluid nature of the body when he analyzes the case of "Ashley X" and identifies a type of body logic where a body's able-ness "can be defined more through social ideology than medical certainty" ("Reshaping the Pillow Angel" 20). Framed this way, rhetoric about the body fluctuates and can be challenged in public discourse by various publics, as definitions of the body are formed socially. The malleability of body rhetoric is especially important for the current essay because we argue that various publics weighing in on Mia's case are able to challenge medical authority and re-articulate Mia's in/eligibility to receive a life-saving kidney transplant.

Because Mia's controversy is articulated through a public other than the medical community, analyzing this situation rhetorically provides a lens through which to understand the limitations of medical authority in defining quality of life and decisions about eligible (right) and ineligible (wrong) bodies. In the following section, we argue that Chrissy asserts authority to define her own daughter's quality of life and challenge medical authority. She does so by invoking a confrontational motherhood persona.

3. Confrontational Motherwork

Amongst the analyzed texts the public discussion of authority is frequently articulated around Chrissy's authority as a mother, particularly in the media coverage of this controversy. In this section, we demonstrate how Chrissy invokes a confrontational motherhood persona that helps establish her maternal ethos and works to empower the media in particular to validate her claims against the doctor. In a rhetorical situation, the proof of ethos, or the credibility of the rhetor, is important to analyze in order to understand the effectiveness of the persuasive appeals. The ethos within Mia's situation was particularly effective in that Chrissy's rhetoric invoked a maternal response, which appealed to readers in a way that afforded her credibility and validity regarding her accusations against the doctor.

Chrissy is the mother of Mia, which provides her with an unquestioned credibility about how much she loves her daughter and a reason to be outraged, but we argue that within her rhetoric she is particularly persuasive through the construction of a confrontational maternal persona 3. For example, Chrissy utilizes a confrontational rhetorical style as she re-constructs the encounter with the CHOP physician and the social worker. In the blog she titled Brick Walls, Chrissy describes the details of the conference room, the participants involved with the meeting, the physical markers of the participant's appearances, and her internal stream of consciousness as she was told the news that Mia was ineligible to receive a life-saving kidney transplant. Chrissy elaborates on the doctor's appearance: "The doctor begins to talk and I listen intently on [sic] what he is saying. He has a Peruvian accent and is small, with brown hair, mustache and is about sixty five years old" (Rivera para. 4). Later in her post, she goes back to the physical description of the doctor, "Rage fills the room. I point in his little, brown pudgy face" (Rivera para. 16). Here, Chrissy stresses the importance for the reader to understand the doctor's skin color and his non-American dialect. When Chrissy tells the doctor that they do not want to put Mia on the transplant list because someone from their family will donate, she emphasizes his condescending response: "'Noooo. She-is-not-eligible-because-of-her-quality-of-life-Because-of-her-mental-delays' He says each word very slowly as if I am hard of hearing" (Rivera para. 13). Chrissy's description introduces the reader to the tense atmosphere with her defensive tone toward the doctor.

Chrissy continues to evoke a confrontational style throughout the post by asserting her rage as she re-interprets the doctor's response in direct quotes as if it is transcribed dialogue. She contends, "He pauses as if he is choosing his words carefully. 'I have been warned about you. About how involved you and your family are with Amelia'" (Rivera para. 25). Chrissy rebukes, "The devil himself could not have produced a more evil laugh. 'Ha! Warned! That is funny! You have no idea…'" (Rivera para. 26). Here, Chrissy embraces her confrontational persona as she compares herself to the devil. Her choice to compare herself to what many God-fearing individuals consider the most evil of entities complements her confrontational style.

As Chrissy recalls the interaction at CHOP, she displays what Tonn refers to as "militant protective love" (5). Militant protective love "broadens the maternal 'ethic of care' beyond its genteel moorings to include aggressive confrontation and occasional bodily risk" (5). At one point Chrissy explains, "I put my hand up. 'Stop talking for a minute. Did you just say that Amelia shouldn't have the transplant done because she is mentally retarded. I am confused. Did you really just say that?'" (Rivera para. 6). She concludes her blog post with the words: "I hope you are disturbed, troubled, distressed, and pissed off when you read this" (Rivera para. 36). In these descriptions, Chrissy exhibits "a fierce otherside occasioned both by systematic oppression and isolated external threats to the welfare of children" (Tonn 5). Chrissy chooses to use antagonistic language and, in doing so, conveys a militant protective form of mothering, justifying her confrontational style.

Chrissy's confrontational maternal persona afforded her a persuasive maternal ethos that motivated other publics to weigh in on Mia's case. Tonn's argument about Mother Jones invites rhetorical scholars to consider the capability of confrontational rhetoric to empower and persuade audiences to accept the rhetor's proposed course of action. Tonn explains, "[M]ilitant mothering reveals that rhetorical qualities like overt confrontation and personal provocation can actually increase identification and empower audiences to think critically and act boldly" (18). In her blog post, Chrissy constructs a maternal persona using confrontational rhetoric, which embraces both the militant, and nurturing aspects of mothering. These aspects of her persona are taken up in the public discourse about Mia's case, thus demonstrating that the mothers of disabled children hold authority in this controversy about claims to quality of life.

Invoking a confrontational motherhood persona with elements of love and rage, Chrissy asserts an argument about Mia's unjustified ineligibility and makes accusations about the doctor's choice of language that continued in the public discussion that ensued, especially that within the media. For example, one article equated the confrontational style of rhetoric used by Chrissy in Brick Walls with a "perfect storm of outrage." Journalist Charles Camosy indicates, "Unfortunately for this hospital and medical team, last week they ran into stubborn parents who, instead of abandoning their disabled child, decided to fiercely defend her life" (para. 9). Although this quotation refers to both parents, attributes such as "stubborn" and "fierce" are assigned to Chrissy, indicating she invoked a "maternal love [that] entails the fierce protection of children, often at any cost" (Tonn 3), and thus suggests the confrontational aspects of her persona were central to the publics' evaluation of the case.

Chrissy's rhetorically constructed confrontational persona helps enhance her maternal ethos carried on in the discourse surrounding Mia's case. The language choices of various media outlets indicate that Chrissy's motherhood status is central to understanding the controversy. In an article titled "Mother's heartbreak as doctors deny sick toddler a kidney transplant-because they say she is 'mentally retarded'" (Roberts), the first few lines highlight Chrissy's maternal status. The article begins, "A family has accused a hospital of denying their child a vital kidney transplant because she is disabled" (Roberts para. 1). After introducing Amelia and her disability to the reader, the author explains, "But her mother[,] Chrissy Rivera says that when she went to their local hospital in Philadelphia last week to discuss the transplant, doctors told her they will not recommend a transplant for the little girl known as Mia" (Roberts para. 3). Following this, Roberts explains, "Mrs Rivera [sic] told ABC News she initially 'thought we were just finding out how a transplant works and how we could be a donor'" (Roberts para. 4). Public discourse surrounding Mia's controversy indicates Chrissy's "stubborn," but loving, maternal persona was highly valued by individuals weighing in on the case.

Chrissy's role as mother is emphasized throughout the public discourse discussing Mia's case. In an ABC News article, Chrissy pleads, "Any mother wants the best for her child and will do whatever it takes to get it…Mia isn't to blame for this. She didn't want ask [sic] for this syndrome and all we ask for is the right to fair medical treatment" (James para. 25). Framing Chrissy in accordance with her social role as a mother allows readers to better identify with Chrissy and her situation. This notion is confirmed later in the article when Roberts identifies, Sunday Stilwell, "a Maryland mother with two autistic boys [who] launched a petition campaign through the website change.org" (para. 18). The author includes a quote by Stilwell, saying, "We had never met, I read about what Chrissy went through and was inspired" (Roberts para. 19). As indicated by these articles, discourse framing Chrissy as a mother works to garner intense public support through audience identification, which also enhances the credibility of Chrissy's accusations against the doctor. This identification, where the audience accepts the maternal love and subsequent rage that must be felt when a child is denied a life-saving treatment, creates an enthymematic argument by placing the maternal authority at the forefront of the debate, and casting the medical community as her antagonist. Thus, if we side with the mother's authority to decide if her disabled child deserves to live, then we are simultaneously denying that authority to the medical community.

Chrissy's confrontational maternal persona works rhetorically on two different levels. First, Chrissy's confrontational persona affords her a maternal ethos as a mother committed to her daughter's livelihood, at any cost. Chrissy's maternal ethos appealed to a public that carried on her militant motherhood in the discourse that narrated Mia's in/eligibility. Second, Chrissy's confrontational motherwork functions as a sense-making tactic that locates her claims against the doctors and CHOP as authoritative. The public conversation, particularly in the media, emphasized Chrissy's role as a mother, thus making Chrissy's accusations justified in the sense that any other person in the same situation would experience similar rage out of love for a child.

In sum, Mia's body is situated within Chrissy's militant protective motherhood narrative, which textualizes her (disabled) body as a product of a family, but more specifically, of a confrontational and loving mother. When the media accentuates her role as the mother, Chrissy's motherwork enhances her maternal credibility, granting her authority over the medical community, and thus lays the foundation for a public to begin building a case for disabled patients' eligibility for treatment and the disabled body's right to medical care. In many ways, language and the use of labels become central to a public argument.

4. Unjust Language

The use of language considered unjust allegedly made by the CHOP physician worked to further motivate an online public to construct rhetorics of eligibility for Mia. The words "mentally retarded" ignited ire, not just in the mother, but also for many readers of Chrissy's blog. For example, on the blog titled "Who deserves a kidney? CHOP says no kidney for Amelia," Roberts ends her description with "Because, as the doctor put it, she was 'mentally retarded'" (para. 1). The Not Dead Yet organization titles a blog post, "Philadelphia: Young Girl Being Denied Transplant Because Her 'Retardation' Doesn't Make her 'Worthy.'" This blog positions the use of the phrase against the value that is placed upon Mia's life. In a response to this post, an individual commented, "This is just horrifying. I just can't believe the hospital that treats my disabled son would be so…callous" (debi9kids). This blogger interprets the phrase "mental retardation" as a rejection of worth or value on the part of the medical community. From these descriptions, it appears that it is the choice of language, what we are calling "unjust language," that allows the public to question medical authority. We argue that "unjust language" is central to the arguments against the medical community because the public focuses on the justice or lack of justice from the doctors; alternatively sympathizing as fellow parents of disabled children, and/or, by highlighting the antiquated term, "mental retardation," as a symbol of the wrongness of the medical community. The lack of compassion on the part of the medical community, the "callous" nature by which the medical community explains their decision, is the gateway for public understanding of the situation as an issue of authority, and opens the door to questions about the value of life, worthiness of medical care, and consequently, who has the authority to make those kinds of decisions. The online public is in agreement that Mia's "mental retardation" was the doctor's reasoning for not allowing Mia on the transplant recipient list, and now the public begins to question why the label should keep a family from being able to donate a kidney to their own child.

Focusing on the ways in which the public responds to unjust language in regards to a disabled body reveals much about what Russell refers to as the politicized body, or the politic of the social body. Russell argues that the way we talk about the physical body situates a political understanding of the body's (in)eligibility for certain rights. From this perspective, the public discussion's insistent focus on the unjust language about Mia's body implies that how we regard bodies has symbolic implications, meaning the ways in which we talk about a body and its able-ness carries much ideological and material weight. In Mia's case, these symbolic implications are a way to engage in a counterargument against ineligibility of individuals who are disabled to receive life-saving treatments based on their mental capacity. One such counterargument anchored in Chrissy's discourse is the accusation that the CHOP physician referred to Mia as "mentally retarded" (Rivera para. 4). Chrissy reveals on Brick Walls:

He [the doctor] gets about four sentences out (I think it is an introduction) and places two sheets of paper on the table. I can't take my eyes off the paper. I am afraid to look over at Joe because I suddenly know where the conversation is headed. In the middle of both papers, he highlighted in pink two phrases. Paper number one has the words, "Mentally Retarded" in cotton candy pink right under Hepatitis C. Paper number two has the phrase, "Brain Damage" in the same pink right under HIV. (para. 4)

Following Chrissy's blog post and subsequent public outcry, CHOP released a statement that began: "As an organization, we regret that we communicated in a manner that did not clearly reflect our policies or intent and apologize for the Riveras' experience" (Livio para. 7). In their formal response, CHOP implies that the issue was miscommunication, and not the hospital's policies, which works rhetorically to distance the hospital from the doctor's language choices. Both Chrissy and the medical community (represented by CHOP in this case) acknowledge the power of language when discussing matters of life and death, and consequently frame this issue around the inappropriate use of the term "mentally retarded," as opposed to the bigger issue of what it means to save a "life."

Chrissy highlighted in her blog that the doctors used the term "mentally retarded" and various publics responded. The focus on the distasteful language foregrounds the Mia controversy because what is underscored in this public conversation is any discussion about underlying medical issues related to recipient rankings. The public reaction indicates that the use of distasteful language was evidence of discriminatory practices against disabled bodies by the medical profession, which makes the label unjust, rather than just uncouth. It is not just the word choice that allows for the questioning of medical authority, but it is the word choice, which is antiquated and discriminatory, that emphasizes the medical community's rationale for denying Mia a chance to live a longer life. To further punctuate their insistence that she does not have a right to live, they deny her family the right to value her life by giving her a kidney of their own, and bypassing the transplant list altogether. In this way, Mia's body is politicized so that she symbolically represents all disabled bodies that have suffered from discrimination. The rhetoric of unjust language about Mia's mental capacity works to narrate her body's in/eligibility based on the universal human right to live and have the same opportunities as abled bodies.

5. Questionable Medical Authority

Pervasive in the public discourse surrounding Mia's case are arguments that express a broader discontent with medical authority, accusations of outdated medical practices, and questions about the inherent values of the medical establishment. The deliberation about medical authority situates the needs of Mia's body in tension with the underlying values of the medical establishment. The questioning of medical authority allows the public to further articulate claims of Mia's in/eligibility, but also allows the critic to analyze a deeper tension over who has the authority to define quality of life and determine what bodies are eligible or ineligible for life-saving procedures.

Some discourse surrounding the controversy highlights bigotry within the medical establishment. A blog post on Not Dead Yet points out a contradiction in a key element on CHOP's Patient Bill of Rights. The Bill of Rights states that all patients have the right to "Receive care, treatment and services regardless of race, color, age, sex, national origin, religion, handicap, disability, sexual orientation, who pays for care or your ability to pay" (qtd. in "Philadelphia" para. 11), but yet the hospital denied this to Mia. Pointing to this contradiction allows Not Dead Yet to make accusations of discrimination against the CHOP physicians, because they are denying Mia her right to "receive care, treatment and services" based on her mental disability. In the same blog, the author connects the individual case to the entire medical establishment. Not Dead Yet posts a news commentary on Mia's case and states, "although I wish I could say the doctor was breaking some kind of law in this instance, physicians are apparently given a lot of latitude when it comes to exercising anti-disability bigotry in the transplant arena" ("Philadelphia" para. 8). Not Dead Yet simultaneously contends that (1) there should be a law against denying Mia her surgery, and (2) that the hospital is engaging in "anti-disability bigotry." It is not just about Mia's case, but also other people who have been and will be denied services in the future. These examples illustrate claims of the questionable practices of the medical establishment more broadly, via their condemnation of CHOP specifically.

In addition to accusations of bigotry, other articles connect Mia's individual case to outdated medical practices. For example, one blogger, a medical student, writes,

Given that there are entire book chapters written about kidney transplantation in the hepatitis C positive patient, and a multicenter clinical trial of kidney and liver transplants in HIV patients has just completed enrollment, it's a little frightening to think that the transplant practices at CHOP could be so outdated. (Varma para. 2)

A second article highlights,

Medical staff also expressed concerns about Mia's ability to cope with taking medication for the rest of her life, and especially when her family were [sic] no longer around to look after her, Mrs. Rivera claims. If true, Mia's treatment would be reminiscent of attitudes in the 1960s, when Downs [sic] syndrome children with physical problems were frequently allowed to die. (Roberts para. 6)

Another article emphasizes the language Chrissy claims was used by CHOP to describe the medical establishment's view of Wolf-Hirschhorn syndrome as "out-dated" (James para. 10). These examples highlight both the outdated attitudes behind CHOP's current medical practices, but also work to provide a reason why medical authority should be questioned. Specifically through the rhetorical analogy between Mia's case and children with Down Syndrome, not only does the reporter question the authority of the medical community in Mia's specific situation, but she also provides a logical argument to show that the medical community has made mistakes in the past and is not immune from making them now and in the future. The examples expand beyond CHOP and highlight outdated medical procedures and lines of thought practiced by the entire medical establishment. Expressing concern over outdated medical practices indicates a public populated with individuals who are untrusting of medical authority as being capable of medically assessing in/eligible bodies.

Another central theme within the discussion surrounding the controversy is a question of values, and this helps various publics debate medical authority over defining which bodies are more deserving of life-saving procedures. Many times, the discussion begins with Mia's particular case but individuals then use her case as a way to make an a fortiori argument about the entire medical profession. In one article titled, "Is denial of life-saving care for mentally disabled girl a sign of things to come?" author Hays explains that Mia's story highlights serious concerns because according to Christian Burgger, J. Francis Cardinal Stafford Chair of Moral Theology at St. John Vianney Theological Seminary in Denver, "more and more medical practitioners today are regarding some lives as less 'worth living' than others" (para. 9). In another article linking Mia's case to a larger discourse about medical practices, Camosy closes his article by expressing:

But if we want to push back against a medical culture which allows this to happen to vulnerable three year old girls, we need to do so consistently for all vulnerable members of the human family who are considered to be less valuable because they lack a certain mental capacity. Vulnerable populations require our special attention and protection not least because of the reasoning that was apparently used in the decision to abandon Amelia Rivera. (para. 11)

This is an important discussion, not just for understanding the various publics' responses to Mia's case, but also for explaining the importance of analyzing these rhetorics for the field of disability studies and scholarship. The aforementioned examples imply that the medical community seemingly gives up on a patient because their life does not have value, or that the medical community chooses not to prolong a life that does not have value compared to prolonging the life of other bodies in need. Deciding who gets transplants and who is more deserving of an organ is not a black and white decision. However, Mia's case reveals another layer to the lack of value that the medical community places on a disabled body when they deny her the right to a surgery even if she is able to procure the organ herself from a donating family member. It is this choice by CHOP that makes Mia's case a symbol for the disabled body community more broadly, as her body is first deemed ineligible for an organ, and then deemed ineligible for saving.

Although the above examples are both from traditional media outlets, the broader public used their own personal experience to indicate the medical establishment's questionable values. One mother blogged about her personal experience indicating, "My kids have uncertain futures (like all of us) but are thriving on their donated kidneys all because the doctors a[t] Children's Healthcare of Atlanta (and UAB) valued their lives" (Roberts para. 4). Implied in this statement is that physicians at CHOP do not value the lives of disabled children, or at least the life of Mia. Another blogger, Varma laments:

There are a lot of ways to say it, but decisions about organ transplants shouldn't be based on intellectual ability, societal worth, or perceived quality of life. Second, it's disappointing. Part of the disappointment is from the long history of denying organ transplants to people with intellectual disabilities, part of it is from the prestige of CHOP in general, and part of it is from having met transplant surgeons and nephrologists from CHIP at the ATC and ASN meetings. It's a sad day to be a kidney transplant recipient when patients and families still have to deal with these obstacles, and it's a sad day to be considering a career in transplantation when people in the field are showing such unacceptable values. (para. 5)

All of the aforementioned examples express unease with the values of the broader medical community, based on the single incident that happened at CHOP specifically. Expressing a discontent with medical authority, outdated medical practices, and defunct values of the medical establishment functions to strengthen an argument of eligibility for Mia. As made apparent in the discourse surrounding the controversy, the public deems Mia's ineligibility as an example of how a medical community unjustly values abled bodies over disabled bodies. Public discourse surrounding this controversy frames Mia's body as symbolic of the disabled population and thus allows for an argument of eligibility for other disabled bodies, and more broadly a discussion of the tensions that underlie decisions about life and death.

6. Conclusion: Rearticulating Ineligibility

Chrissy's confrontational motherwork, the revelation of unjust language, and the public's questioning of medical authority work as counterarguments to Mia's ineligibility to be considered as a transplant recipient. Chrissy's confrontational style narrated Mia as the daughter of a caring, but fierce mother. The use of the term "mentally retarded" struck a chord with the public. Equipped with this knowledge about unjust communication, the public then questions the authority and inherent values of, not just CHOP, but the entire medical establishment.

As expressed through the various public discourses, the controversy surrounding Mia's case focused less on Mia's physical condition and the factors that might medically excuse her from being a transplant candidate, and more on the medical establishment. The way the publics articulate Mia's eligibility reveals tension over who is allowed to make claims regarding individual quality of life. Embedded in the discourse surrounding Mia's case are presumptions about the perceived quality of life for disabled persons. In response to the Not Dead Yet news commentary, one visitor responded, "Speaking as a person with disabilities, I can tell you that you are NOT QUALIFIED to judge her quality of life. Doctors should not make insulting assumptions about how you THINK those of us with disabilities experience our quality of life" (Andrea S. para. 3). On another weblog, the author declares, "the sheer weight of ignorance about the lives of disabled people couldn't be any more clear than in the doctor's presumptions about Amelia's quality of life" (Cohen-Rottenberg para. 6). The responses indicate a backlash directed toward the entire medical establishment, even though they are commenting on the specific case of Mia Rivera and the reasons for her ineligibility. As revealed in the discourse about Mia's controversy, the intersection of mothering, public responses, and the medical establishment illuminate a tension over the authority to assess quality of life.

This analysis demonstrates what Jordan describes as the "public's belief that it should have a say in how medical issues are decided" (21). Through Mia's controversy, not only do different publics articulate Mia's eligibility, but they also express a tension in who has the authority to define quality of life and determine what bodies are eligible or ineligible for life-saving procedures. In other words, the arguments produced in the public discourse surrounding Mia's case are symptomatic of unease about the medical establishment's assertion of authority to define quality of life and a body's able-ness.

Mia's controversy developed quickly, but also resolutely with the passing of a New Jersey Senate health committee bill, intending to prevent other individuals like Mia from discrimination by the medical profession. Additionally, Mia was not only reconsidered as a transplant candidate, but also received a kidney transplant, donated by her mother. Her case exemplifies the complexities that arise in discourses about the body and its able-ness and further illustrate the material reaches of arguments about the body and quality of life.

Works Cited

  • Andrea S. "Philadelphia: Young girl being denied transplant because her 'retardation' doesn't make her 'worthy.'" Notdeadyet. 14 Jan. 2012. Web. 6 Jan. 2014.
  • Avril, Tom. "Children's Hospital Apologizes to Family of Disabled Girl for Insensitive Statement." The Inquirer Daily News. 16 Feb. 2012. Web. 6 Jan. 2014.
  • Brown, Ivan and Roy I. Brown. Quality of Life and Disability: An Approach for Community Practitioners. London and New York: Jessica Kingsley Publishers, 2003. Print.
  • Brueggemann, Brenda Jo and James A. Fredal "Studying Disability Rhetorically." Disability Discourse. Ed. Mairian Corker and Sally French. London: Open Books, 1999. 129-135. Print.
  • Caeton, D. A. "Choice of a Lifetime: Disability, Feminism, and Reproductive Rights." Disability Studies Quarterly 31.1 (2011). Web.
  • Camosy, Charles. "Amelia Rivera and Medical Morality." The Washington Post. 18 Jan. 2012. Web. 6 Jan. 2014.
  • Cherney, James L. "The Rhetoric of Ableism." Disability Studies Quarterly 31.3 (2011). Web.
  • Cohen, Ed. (2008). "A Body Worth Having? Or, a System of Natural Governance." Theory, Culture & Society 25.3 (2008): 103-129. Web. http://dx.doi.org/10.1177/0263276408090660
  • Cohen-Rottenberg, Rachel. "A Stunning Injustice: The Case of Amelia Rivera. Journeys with Autism. 15 Jan. 2012. Web. 6 Jan. 2014.
  • Debi9kids. "Philadelphia: Young Girl Being Denied Transplant Because Her 'Retardation' Doesn't Make Her 'Worthy.'" 14 Jan. 2012. Web. 6 Jan. 2014.
  • Foley, Megan. "Voicing Terri Schiavo: Prosopopeic Citizenship in the Democratic Aporia Between Sovereignty and Biopower." Communication and Critical/Cultural Studies 7.4 (2010): 381-400. Web. http://dx.doi.org/10.1080/14791420.2010.523433
  • Gorman, Ali. "Girl once denied kidney transplant returns home healthy." 6abc.com. 11 Oct. 2013. Web. 8 Jan. 2014.
  • Hauser, Gerard A. "Incongruous Bodies: Arguments for Personal Sufficiency and Public Insufficiency." Argumentation and Advocacy 36 (1999): 1-8. Web.
  • Hayes, Sharon. The Cultural Contradictions of Motherhood. New Haven, CT: Yale University Press. Print.
  • Hays, Charlotte. "Is denial of life-saving care for mentally disabled girl a sign of things to come?." National Catholic Register. 1 Feb. 2012. Web. 6 Jan. 2014.
  • Hyde, Michael .J. and Craig R. Smith. "Aristotle and Heidegger on Emotion and Rhetoric: Questions of Time and Space." The Critical Turn: Rhetoric and Philosophy in Postmodern Discourse. Carbondale and Edwardsville: Southern Illinois University Press, 1984. 68-99. Print.
  • Hyde, Michael J., and Sarah McSpiritt. "Coming to Terms with Perfection: The Case of Terri Schiavo." Quarterly Journal of Speech 93.2 (2007): 150-178. Web. http://dx.doi.org/10.1080/00335630701426777
  • Jordan, John W. (2009). "Reshaping the 'Pillow Angel': Plastic Bodies and the Rhetoric of Normal." Quarterly Journal of Speech 95.1 (2009): 20-42. Web. http://dx.doi.org/10.1080/00335630802621060
  • James, Susan Donaldson. "Mom says mentally impaired tot heartlessly denied transplant." ABC NEWS. 17 Jan. 2012. Web. 6 Jan. 2014.
  • Jordan, John W. "The Rhetorical Limits of the 'Plastic Body.'" Quarterly Journal of Speech 90.3 (2004): 327-358. Web. http://dx.doi.org/10.1080/0033563042000255543
  • Kafer, Alison. Feminist, Queer, Crip. Bloomington: Indiana University Press, 2013. Print.
  • Lyne, John. "Contours of Intervention: How Rhetoric Matters to Biomedicine." Journal of Medical Humanities 22.1 (2001): 3-13. Web. http://dx.doi.org/10.1023/A:1026622309671
  • Livio, Susan K. (2012, March 8). "Bill to prevent discrimination against disabled people in need of transplants gets panel approval." Nj.com. 8 March 2012. Web. 6 Jan. 2014.
  • Lutz, Barbara J. Understanding the influence of disability on quality of life: A comparison on the perspectives of consumers with the models in the literature. Ph.D. Thesis, University of Wisconsin-Madison, 2000. Web.
  • O'Donovan, Maeve. "Feminism, Disability, and Evolutionary Psychology: What's Missing?" Disability Studies Quarterly 33.4 (2013). Web.
  • Painter, Kim. "'Team Amelia' Back Transplant for Special Needs Child." USA Today News. 16 Jan. 2012. Web. 6 Jan. 2014.
  • "Philadelphia: Young Girl Being Denied Transplant Because Her 'Retardation' Doesn't Make Her 'Worthy.'" NotDeadYet. 14 Jan. 2012. Web. 6 Jan. 2014.
  • Price, Margaret. "Her Pronouns Wax and Wane": Psychosocial Disability, Autobiography, and Counter-Diagnosis. Journal of Literary & Cultural Disability Studies 3.1 (2009): 11-33. Web. http://dx.doi.org/10.1353/jlc.0.0010
  • Rivera, Chrissy. Brick Walls. 12 Jan. 2012. Web. 6 Jan. 2014.
  • Roberts, Hannah. "Mother's heartbreak as doctors deny sick toddler a kidney transplant-because they say she is 'mentally retarded'." Mail Online. 18 Jan. 2012. Web. 6 Jan. 2014.
  • Roberts, Julia. "Who deserves a kidney? CHOP says no kidney for Amelia." Kidneysandeyes. 14 Jan. 2012. Web. 6 Jan. 2014.
  • Russell, Emily. Reading Embodied Citizenship: Disability, Narrative, and the Body Politic. New Brunswick, New Jersey, and London: Rutgers University Press, 2011. Print.
  • Soldatic, Karen and Shaun Grech. "Transnationalising Disability Studies: Rights, Justice and Impairment." Disability Studies Quarterly 34.2 (2014). Web.
  • Stilwell, Sunday. "Children's Hospital of Philadelphia: Allow the kidney transplant Amelia Rivera needs to survive." Change.org. August 2012. Web. 6 Jan. 2014.
  • Tonn, Mari Boor. "Militant Motherhood: Labor's Mary Harris "Mother" Jones." Quarterly Journal of Speech 82.1 (1996): 1-21. Web. http://dx.doi.org/10.1080/00335639609384137
  • Varma, Manu. "Amelia Rivera." Transplant Headquarters. 14 Jan. 2012. Web. 6 Jan. 2014.
  • Yoong, Amanda, and Koritasas, S. The impact of caring for adults with intellectual disability on the quality of life of parents. Journal of Intellectual Disability Research 56.6 (2012): 609-619. Web. http://dx.doi.org/10.1111/j.1365-2788.2011.01501.x

Endnotes

  1. The term "motherwork" in this essay is informed by Mari Boor Tonn's (1996) argument about Mary Harris "Mother" Jones' maternal persona and the symbolic use of motherhood. She argues that Jones performed symbolic motherhood by persuasively adopting a maternal persona that was both nurturing and militant. Tonn suggests that "while a maternal persona may be warmly nurturing, it also may be confrontational, both in challenging those who threaten a rhetor's constituency and in challenging those audiences themselves to resist" (p. 3). In the current analysis, we suggest that Chrissy Rivera performed symbolic motherhood by adopting a confrontational maternal persona that resonated with various publics.
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  2. Throughout this essay, we refer to each of the Riveras by their first names. Chrissy Rivera as "Chrissy" in order to distinguish her from Mia Rivera (her daughter) and Joe Rivera (her husband).
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  3. It is significant to mention that Joe Rivera is relatively absent from Chrissy's rhetoric. Although Chrissy mentions Joe anecdotally in her blog, the Brick Walls blog post is written from her perspective. This part of our analysis reveals that Chrissy's maternal-only rhetoric begins to articulate Mia's eligibility, and signifies adherence to a traditional mothering ideology that mothers are primary caregivers (see Hayes 1996), and as we suggest, includes both nurturing and confrontational aspects, of their children.
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