For the final weekly response, let us think about key ‘takeaways’ from the course.
Of the sources* we’ve encountered in the course, which two have made the greatest impact on your perspective on disability and sexuality? Explain, in as much detail as possible, how each has transformed or enriched your understanding. Be sure to connect your response clearly to each of these sources through proper quotation and citation practices.
[*These can be assigned readings or video sources, including sources from our Zoom meetings.
Citations are necessary, but bibliographic entries are not.
• Besponses should be 450-500 words in length.
For the final weekly response, let us think about key ‘takeaways’ from the course. Of the sources* we’ve encountered in the course, which two have made the greatest impact on your perspective on disab
47 2 At the same time, Out of time Ashley X The stories of women with disabilities must be told, not as stories of vulnerability, but as stories of injustice. —sherene r azack, “From p ity to respect” in thinking afout crip futurity, i find myself haunted by Ashley X. Born in 1997, the girl known as Ashley X was diagnosed with “static encephalopathy” a few months after her birth. “ in the ensuing years,” doctors note, “her development never progressed beyond that of an infant,” and her doctors held no hope that her cognitive or neuro – logical baseline would improve. 1 “At the age of 6 years, she [could] not sit up, ambulate, or use language.” 2 Concerned about their daughter’s long-term future, Ashley’s par – ents met with doctors in 2004 to discuss the potential effects of puberty and physical growth on their ability to care for her at home. t ogether they crafted a two-pronged plan: “attenuate” Ashley’s growth by starting her on a high-dose estrogen regimen; and, prior to the estrogen treatment, remove Ashley’s uterus and breast buds in order “to reduce the complications of puberty” and mitigate potential side effects of the estrogen treatment. 3 According to her parents and doctors, these interventions were necessary for Ashley’s future quality of life: they would reduce her pain and discomfort (by removing the possibility of her menstruating or developing breasts) and would enable her parents to continue caring for her at home (by keeping her small enough to turn and lift easily). Her parents worried that, without the t reatment, Ashley would become too cumbersome for them to lift safely, and, as a result, her participation in social and recreational activities would decrease dramatically. 4 Ashley’s doctors took this concern a step further, expressing fear that caring for her at home might eventu – ally become “untenable” and that Ashley’s parents would need to place her “in the hands of strangers.” 5 Kafer, Alison. Feminist, Queer, Crip, Indiana University Press, 2013. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/uwinnipeg/detail.action?docID=1189107. Created from uwinnipeg on 2021-01-01 15:48:26. Copyright © 2013. Indiana University Press. All rights reserved. 48 | At the Same Time, Out of Time From the moment this case became public, in late 2006, it has garnered wide- spread attention. Both Ashley’s doctors and Ashley’s parents have written extensively about the case, carefully articulating their respective positions on the appropriateness of the t reatment. Bioethicists, disability rights activists, pediatric specialists, parents of disabled children, policy makers, disability studies scholars, legal experts, bloggers, and journalists have joined the fray, debating the ramifications of this case in par – ticular and of growth attenuation/sterilization in general. 6 Critics of the t reatment have condemned the hospital for violating sterilization regulations, challenged the parents’ presumption that they know what is best for their daughter, and debated the appropriateness of reshaping children’s bodies without their consent. s upporters of the t reatment have stressed the difficulties of parenting severely disabled children, the noble intentions of the parents, and the alleged benefits of growth attenuation and sterilization. r ather than rehash that work here, parsing the legalities of the case or determining the proper decision-making authority or debating the moral permissibil – ity of surgically shaping children, i want to take a different tack, rereading Ashley’s case through the lens of time and futurity. As becomes clear in both parental and medical justifications of the t reatment, the case of Ashley X offers a stark illustration of how disability is often understood as a kind of disruption in the temporal field. 7 s upporters of the t reatment frame Ash – ley’s disability as a kind of temporal disjuncture; not only had she failed to grow and develop “normally,” but her mind and body were developing at different speeds from each other. According to this logic, Ashley’s body required intervention because her body was growing apart from her mind; physically, her body was developing rapidly, but mentally, her mind was failing to develop at all. As a result, she was embodied asynchrony; her mind and body were out of sync. By arresting the growth of Ash – ley’s body, the t reatment could stop this gap between mind and body from growing any wider. i n order to make this argument, Ashley’s parents and doctors had to hold her future body—her imagined future body—against her, using it as a justification for the t reatment. Without intervention, the asynchrony between mind and body would only grow wider; Ashley’s body would become more and more unbearable to her, to her parents, and to those encountering her in public. This future burden, brought on by the future Ashley, could only be avoided by arresting the present Ashley in time. Adding to the future framing of the case is the fact that both parents and doctors have offered the t reatment as a template for other children; they have expressed the hope that the t reatment will, in the future, become more widespread. The Ashley case, in other words, is shot through with temporal framings of the mind/body, especially the disabled mind/body, and with rhetoric about the future. Before examining the temporal framing of the case, i will first present an overview of the t reatment and its legal aftermath, as well as a summary of how Ashley’s parents and doctors explain and justify the t reatment. The bulk of the chapter reads the case through a temporal framing, focusing on the ways in which Ashley was cast, and cast Kafer, Alison. Feminist, Queer, Crip, Indiana University Press, 2013. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/uwinnipeg/detail.action?docID=1189107. Created from uwinnipeg on 2021-01-01 15:48:26. Copyright © 2013. Indiana University Press. All rights reserved. At the Same Time, Out of Time | 49 as, out of time; from the beginning of the case, she has been represented as tempo- rally disjointed, as an eternal child, and as threatened by her future self. i n addition, i explore the gendered dimensions and assumptions of the t reatment, detailing how Ashley’s femaleness, or future femaleness, rendered her atemporality particularly gro – tesque. As this story makes painfully clear, not all disability futures are desirable; in other words, the problem is not only the inclusion of disability in our futures but also the nature of that inclusion. i conclude the chapter, then, with a brief rebection about how to imagine desirably disabled futures. A Case History of the Ashley t reatment Ashley’s surgery took place under the direction of Dr. Daniel Gunther in July of 2004, at seattle Children’s Hospital; the procedure, which was “uneventful,” included a hys – terectomy, a bilateral mastectomy, and an appendectomy. 8 For the next two and a half years, Ashley received high doses of estrogen in an attempt to stunt her growth. ( estro – gen accelerates the “maturation of the epiphyseal growth plates,” which means one’s bone plates fuse quickly, arresting growth). 9 At the conclusion of the estrogen regimen, Ashley’s size was about average for a nine-year-old girl: fifty-three inches tall and sixty- three pounds. Three years later, in January 2010, her parents reported that her size had remained virtually unchanged (fifty-three inches tall and sixty-five pounds). X-rays of her hands revealed that the gaps between her finger bones had fused, indicating that she had indeed reached her maximum height. 10 By her doctors’ and her parents’ mea – sure, the t reatment was a success. 11 For many disabled people and disability activists, however, the t reatment was nothing to celebrate. As the case became public, disability rights organizations, dis – ability activists, and disability studies scholars spoke out against the hospital’s actions, and the Washington p rotection and Advocacy s ystem (WpA s) launched an investiga – tion in January 2007. 12 i n m ay of that year, reviewers from W pA s issued their report on the case, finding that “[t]he sterilization portion of the ‘Ashley t reatment’ was con- ducted in violation of Washington s tate law, resulting in violation of Ashley’s constitu – tional and common law rights.” 13 According to W pA s, the hospital should have sought a court order before moving forward with the sterilization; state regulations mandate judicial review prior to the sterilization of patients who do not or cannot consent. Although the hospital’s own ethics committee had noted in regard to the hyster – ectomy that “there is need for a court review of this aspect of [the] proposal,” no such review took place. 14 i nstead, after the ethics committee issued its report, Ashley’s par – ents consulted with attorney Larry Jones about the sterilization. i n a June 2004 letter to Ashley’s father, Jones asserts, “ it is not necessary to have a court hearing on steriliza – tion when the object of the medical procedure is not sterilization, but to obtain another medically necessary benefit.” 15 r ather, sterilization would be “merely a byproduct of surgery performed for other compelling medical reasons,” namely the prevention of bleeding associated with estrogen therapy and the cessation of menstruation. 16 s ince Kafer, Alison. Feminist, Queer, Crip, Indiana University Press, 2013. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/uwinnipeg/detail.action?docID=1189107. Created from uwinnipeg on 2021-01-01 15:48:26. Copyright © 2013. Indiana University Press. All rights reserved. 50 | At the Same Time, Out of Time sterilization was not the main goal of the treatment, Jones argued, a court order was unnecessary. m oreover, he explained, the sterilization policies were intended to pro – tect those patients who might develop or regain the capacity to raise children; Ashley would never have the ability to make child-bearing decisions, so there was no need to protect her from the permanence of sterilization. 17 Ashley’s father sent the letter to Ashley’s doctors, who later told W pA s that they had accepted the letter as a form of “court review” and acted accordingly. 18 The Washington p rotection and Advocacy s ystem disagreed with this logic, argu – ing not only that the parents’ consultation with Jones did not qualify as judicial review, but that his legal opinion “is not supported by a reasonable interpretation of pertinent l aw.” 19 They explained that existing policy clearly required the hospital to safeguard Ashley’s interests through a thorough judicial review. s eattle Children’s Hospital accepted the findings in the W pA s report, agreeing that they had acted inappropri – ately in not following their own ethics committee’s push for a court review. According to a joint statement signed by both parties in m ay 2007, [s eattle] Children’s [Hospital] agrees with the finding in the report that Ashley’s sterilization proceeded without a court order in violation of Washington state law, resulting in violation of Ashley’s constitutional and common law rights. Children’s deeply regrets its failure to assure court review and a court order prior to allowing performance of the sterilization and is dedicated to assuring full compliance with the law in any future case. 20 Dr. David Fisher, the medical director of s eattle Children’s Hospital, issued a statement supporting the W pA s findings, admitting “an internal miscommunication which resulted in a violation of the law” and taking “full responsibility.” 21 i n their joint state – ment with W pA s, s eattle Children’s Hospital agreed to obtain a court order before permitting growth attenuation or sterilization procedures on other disabled children; they also pledged to develop stronger oversight and monitoring programs over their sterilization practices and policies. Finally, the hospital consented to the addition of a disability rights advocate to their ethics committee. Although the case of Ashley X is “closed”—W pA s has released their findings; s eattle Children’s Hospital has apologized and issued new guidelines per their agree – ment with W pA s—the Ashley t reatment remains an open question. Ashley’s doc – tors and parents continue to write (separately) about the t reatment, presenting it as a viable course of action for other families. The u niversity of Washington held symposia devoted to the case in 2007 and 2009; in late 2010, the s eattle Growth Attenuation and e thics Working Group ( sWG), an offshoot of the first symposium, published a position paper on growth attenuation. 22 i n that report, they argue that “growth attenuation can be morally permissible under specific conditions and after thorough consideration”; one of those conditions is that the patient be neither ambu – latory nor communicative. 23 Although most of the twenty-person group were able to agree to this compromise position, two participants wrote brief dissents, spelling Kafer, Alison. Feminist, Queer, Crip, Indiana University Press, 2013. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/uwinnipeg/detail.action?docID=1189107. Created from uwinnipeg on 2021-01-01 15:48:26. Copyright © 2013. Indiana University Press. All rights reserved. At the Same Time, Out of Time | 51 out continued points of disagreement among some members. 24 These points of dis- sension, combined with the report’s call for additional research, suggest that more debates and reports lie ahead. Documenting the Ashley t reatment The details of the Ashley treatment became public almost two and a half years after her surgery. i n October 2006, two doctors centrally involved in the case—Dr. Daniel Gun – ther, a pediatric endocrinologist, and Dr. Douglas Diekema, a pediatric bioethicist— published the results of the growth attenuation therapy in the Archives of Pediatric and Adolescent Medicine . s everal months later, Ashley’s parents launched a blog called The “Ashley Treatment”: Towards a Better Quality of Life for “Pillow Angels.” As these titles suggest, both texts took a future-oriented approach; they presented the Ashley t reat- ment as a new tool in the care of disabled children, one that other parents and doctors might choose to replicate. Before addressing this future-orientation, or analyzing the rhetoric deployed in each text, i first offer a brief summary of each document. in their initial article, which focused primarily on the growth attenuation therapy, Gunther and Diekema argue that Ashley will benefit both physically and emotionally from her smaller size: A child who is easier to move will in all likelihood be moved more frequently. Being easier to move means more stimulation, fewer medical complications, and more social interaction. p ersonal contact between parent and child is likely to be more direct and personal without the need for hoisting apparatus or other devices. Being easier to move and transfer also makes it more likely that the child will be included in family activities and family outings. 25 Gunther and Diekema frame the growth attenuation therapy as essential to Ashley’s future quality of life; without it, they claim, her parents would eventually be unable to care for her at home or to include her in family events. Gunther and Diekema’s article is as interesting for what it excludes as for what it includes. While the W pA s report stressed the hysterectomy, discussing it at length, the two doctors limit discussion of the procedure and its ramifications to a single para – graph. “A word here about hysterectomy is probably appropriate,” they concede, cast – ing discussion about the hysterectomy—and, by extension, the hysterectomy itself—as a mere side issue to the more important topic of growth attenuation. 26 The hysterec – tomy is apparently so trivial, or so incidental, as not to merit extensive analysis on its own; they do not even use the word “sterilization” in regard to Ashley, thereby avoiding that conversation altogether. i n downplaying the hysterectomy, Gunther and Diekema echo the stance of attorney Larry Jones: as Jones argued in his letter to the family, the hysterectomy and resultant sterilization were only byproducts of treatment done for other reasons. The hysterectomy was performed not in order to sterilize Ash – ley but to mitigate the risks of uterine bleeding (a side effect of the estrogen regimen) and the anxiety and discomfort of menstruation. s ince Ashley would never develop Kafer, Alison. Feminist, Queer, Crip, Indiana University Press, 2013. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/uwinnipeg/detail.action?docID=1189107. Created from uwinnipeg on 2021-01-01 15:48:26. Copyright © 2013. Indiana University Press. All rights reserved. 52 | At the Same Time, Out of Time the ability to raise children, preserving her reproductive health was not an issue; she had no need of her uterus, so there was no need to discuss it.effectively rendering Ashley’s breasts as even more expendable than her uterus, Gunther and Diekema do not mention the bilateral mastectomy at all—nor does Diekema in an interview with C nn a few months later. 27 When eventually pressed about this silence, Gunther and Diekema argue that the mastectomy was irrelevant to growth attenuation and high-dose estrogen therapy; there was nothing to discuss. 28 Although Diekema has addressed the mastectomy in more recent articles, he seems to do so only in response to criticism, not because he sees the mastectomy as anything meriting attention in and of itself. 29 Ashley’s parents, however, understand the mastectomy differently, representing it on their blog as an essential component of “the Ashley t reatment”; for them, the hysterectomy, mastectomy, and estrogen regimen are all of a piece. The mastectomy, or, to use their language, “breast bud removal,” was necessary for three reasons. 30 The primary reason for the “removal” was that any breast development was likely to cause Ashley pain and discomfort. Breasts would make lying down unpleasant for Ashley (“large breasts are uncomfortable lying down with a bra and even less comfortable without a bra”) and would “impede securing Ashley in her wheelchair, stander, or bath chair, where straps across her chest are needed to support her body weight.” 31 Those straps would then compress Ashley’s breasts, causing further pain and confusion. But – tressing this rationale for the procedure were two “additional and incidental benefits”: the bilateral mastectomy would eliminate the possibility of breast cancer or fibrocystic growth, two conditions present in the family; it would also prevent Ashley from being inappropriately “sexualized.” According to Ashley’s parents, the mastectomy “posed the biggest challenge to Ashley’s doctors, and to the ethics committee,” but the parents ultimately convinced them of the benefits of the procedure. 32 Ashley’s parents launched their blog on January 2, 2007, not long after Ashley completed her estrogen regimen, and it was this text that generated worldwide atten – tion. s uch attention seemed to be the parents’ goal, as they started the blog “for two purposes: first, to help families who might bring similar benefits to their bedridden p illow Angels; second, to address some misconceptions about the treatment and our motives for undertaking it.” 33 The blog covers much of the same terrain as Gunther and Diekema’s article, although more informally; it discusses Ashley’s medical history and diagnosis, the details of the t reatment, and a point-by-point justification for the procedures. These pieces are supplemented by family photographs of Ashley (with her parents’ and siblings’ faces blurred for privacy), “testimonies” from other parents of “pillow angels,” letters of support, and excerpts from sympathetic editorials and com – mentaries. 34 The blog also offers definitions for two key terms that did not appear in the original article by Gunther and Diekema: “the Ashley t reatment” and “pillow Angel.” “The Ashley t reatment” refers to the combination of growth-attenuating estrogen reg – imen, hysterectomy, and “breast bud removal,” while “ pillow Angel” signifies Kafer, Alison. Feminist, Queer, Crip, Indiana University Press, 2013. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/uwinnipeg/detail.action?docID=1189107. Created from uwinnipeg on 2021-01-01 15:48:26. Copyright © 2013. Indiana University Press. All rights reserved. At the Same Time, Out of Time | 53 people with a cognitive and mental developmental level that will never exceed that of a 6–month old child as well as associated extreme physical limitations, so they will never be able to walk or talk or in some cases even hold up their head or change position in bed. pillow Angels are entirely dependent on their caregivers. 35 Given the intent of the blog, it is not surprising that Ashley’s parents see the t reatment as an unmitigated success. As they told C nn in 2008, “Ashley did not grow in height or weight in the last year, she will always be bat-chested, and she will never suffer any menstrual pain, cramps, or bleeding.” 36 Out of Line, Out of t ime Always bat-chested, never menstruating, finished growing: for Ashley’s parents, the treatment was undeniably about arresting Ashley’s development so that they might continue to lift and carry her without difficulty. m ention of Ashley’s bat chest and hysterectomy, however, suggests that more than weight was at stake in their decision. They were also concerned about the developmental disjuncture taking place as her body, which was developing more typically, grew further away from her mind, which “stopped growing . . . when she was a few months old.” They understood Ashley’s body as en route to “adulthood,” even though her mind was permanently mired in “child – hood,” and this disconnect required intervention. Doctors and bioethicists following the case echoed this concern; the t reatment was necessary to keep Ashley’s cognitive self and physical self aligned. The Ashley t reatment thus enacted a circular tempo- ral logic: Ashley’s disabilities rendered her out of time, asynchronous, because of this developmental gap between mind and body; her development needed to be arrested to correct this mind/body misalignment; this arrested development then cast her further out of time, more befitting her permanent cognitive infancy. From the beginning, the t reatment was described as a way to correct the dis – juncture between Ashley’s body and mind. “When you see Ashley,” Dr. Diekema tells C nn , “it’s like seeing a baby in a much larger body.” 37 Without the t reatment, this disjuncture would only become more pronounced, as Ashley would eventually become not only a baby in a much larger body, but a baby in an adult ’s body. What was needed, as her parents put it, was to bring Ashley’s “physical self closer to [her] cognitive self.” 38 As John Jordan argues, “Despite her otherwise healthy prognosis, Ashley’s body had to be articulated as ‘wrong’ in such a way that the t reatment could be recognized as the best way to make her ‘right.’” 39 This “wrongness” was framed in terms of a temporal and developmental misalignment between mind and body, “the brain of a 6–month- old” in the body of one much older; to the extent possible, the t reatment corrects that disjuncture. 40 i n this desire for mind and body to align, what we see is a temporal framing of dis – ability dovetailing with a developmental model of childhood. in classical child devel – opment theory, children move through a defined sequence of stages toward adulthood, a one-way and linear march “upward.” Children can be seen in this framework as Kafer, Alison. Feminist, Queer, Crip, Indiana University Press, 2013. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/uwinnipeg/detail.action?docID=1189107. Created from uwinnipeg on 2021-01-01 15:48:26. Copyright © 2013. Indiana University Press. All rights reserved. 54 | At the Same Time, Out of Time “unfinished” adults, or as people who have yet to move through the necessary stages of growth and development. 41 What this understanding of childhood often means is that disabled people, particularly those with intellectual disabilities (or “developmen – tal” disabilities, as they are often known), are also cast as “unfinished” adults. Dieke – ma’s description of Ashley as a “baby in a much larger body” rebects an extension of this logic: regardless of how old Ashley is chronologically, she will always be a “baby” developmentally. ( similar logics are at work when Jerry Lewis refers to adults with multiple dystrophy as “kids” or when Christopher r eeve describes paralysis as having “suddenly transformed [him] into a forty-two-year-old infant.” 42 r eeve aligns physical dependence with infancy, and Lewis frames disability as inherently infantilizing.) The linkage of intellectual disabilities with childhood has a long history. Licia Carlson, explaining that people classified as “idiots” in the late nineteenth and early twentieth centuries were seen as “remain[ing] at an early stage of development,” notes that superintendents of state institutions often referred to their wards as “man-baby,” “woman-baby,” and “child-baby.” 43 Within this framework, there is no room for the adult with intellectual disabilities; if adulthood is about independence, autonomy, and productivity, then adulthood becomes both unachievable and inconceivable in relation to profound intellectual impairment like Ashley’s. in their initial defense of the treatment, Gunther and Diekema stress that Ashley faces a future of no future: she is “an individual who will never be capable of holding a job, establishing a romantic relationship, or interacting as an adult.” 44 Within the logics of normative time, adults work, marry, and live independently; but according to Gunther and Diekema, disability renders too many of such practices impossible. As a result, the interventions can do no harm; she is already prohibited by her disabilities from having romantic relationships (or children), so her breasts and uterus are easily removed. notice, too, in their description the conbation of adulthood with productivity; interacting as an adult is paralleled with holding a job. Disability, then, is defined as a lack of productivity; in a move that brings the word closer to its roots, being disabled means being unable to work. Bioethicist n orman Fost makes plain this perspective in his summary of the case: “ it [the Ashley case] reminds [me] of the scandal some years ago when it was discovered that some Cadillacs had Chevrolet engines.” 45 i n posi – tioning Ashley as “a Cadillac with a Chevrolet engine,” Fost not only references the “deceptive” nature of her imagined future appearance—a child in an adult’s body—but reveals the degree to which we view normal adulthood as a time of, and as defined by, productivity. We are all to be smoothly running engines, and disability renders us defective products. Ashley does not merit the protections offered adults or other chil – dren because she will never be an adult. The term “pillow angel” both rebects and perpetuates this linking of disability with infancy and childhood. Ashley’s parents explain that they “call her our p illow Angel since she is so sweet and stays right where we place her—usually on a pillow.” 46 Kafer, Alison. Feminist, Queer, Crip, Indiana University Press, 2013. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/uwinnipeg/detail.action?docID=1189107. Created from uwinnipeg on 2021-01-01 15:48:26. Copyright © 2013. Indiana University Press. All rights reserved. At the Same Time, Out of Time | 55 This phrasing paints a picture of infant-like dependency and passivity; it makes it dif- ficult to imagine Ashley as a teenager or a woman-to-be. Thus, much as the estrogen therapy and mastectomy make Ashley look like the permanent child she allegedly is, the “pillow angel” label names her as such. Within this schema, her body, mind, and identity all line up perfectly. such alignment is necessary not only to ensure that people treat Ashley “in ways that are more appropriate to [her] developmental age,” but also to protect those around her from disruptions in their temporal fields. 47 Dr. n orman Fost, a bioethicist who has often written about the case, echoes Diekema’s concerns about the problem of mind/ body misalignment: [H]aving her size be more appropriate to her developmental level will make her less of a “freak.” . . . i have long thought that part of the discomfort we feel in looking at profoundly retarded adults is the aesthetic disconnect between their developmen – tal status and their bodies. There is nothing repulsive about a 2 month old infant, despite its limited cognitive, motor, and social skills. But when the 2 month baby is put into a 20 year old body, the disconnect is jarring. 48 i n invoking the image of an adult body with a baby’s brain, and assuming such an image prompts repulsion, Fost enters the realm of the grotesque. He positions Ash – ley as the embodiment of category confusion, of “matter out of place”; the imagined Ashley blurs infancy and adulthood together, troubling cultural understandings of the normative life course. 49 We are to imagine an adult that looks like “us” but can never function or think like us, and this collision of sameness and difference makes us uncomfortable. George Dvorsky, another bioethicist commenting on the case, makes explicit this link to the grotesque. Writing in support of the treatment, he too praises its ability to “endow her with a body that more closely matches her cognitive state— both in terms of her physical size and bodily functioning.” He then goes on to argue that the “estrogen treatment is not what is grotesque here. r ather, it is the prospect of having a full-grown and fertile woman endowed with the mind of a baby.” 50 The dis – juncture between mind and body is apparently all the more jarring, all the more gro – tesque , because of Ashley’s gender. Within this framework, Ashley’s imagined future body is held against her present body and deemed excessive and inappropriate: too tall, too big-breasted, too fertile, too sexual, too adult for her true baby nature. The t reatment was thus necessary to prevent this imagined big and breasty body—this grotesque, fertile body—from coming into being. Dvorsky makes clear the unspoken reason why the growth attenuation had to be combined with a hysterectomy; without the latter, Ashley would remain grotesquely fertile. The definitions that Ashley’s parents provide on their blog reveal their own anxi – eties about the too-big, too-fertile body to come: they describe the hysterectomy as the “removal of tiny uterus” and the mastectomy as “breast bud removal: removal of almond sized g l a nd s .” 51 Both procedures must be done quickly, they argue, before “rapid Kafer, Alison. Feminist, Queer, Crip, Indiana University Press, 2013. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/uwinnipeg/detail.action?docID=1189107. Created from uwinnipeg on 2021-01-01 15:48:26. Copyright © 2013. Indiana University Press. All rights reserved. 56 | At the Same Time, Out of Time growth of breasts and uterus” begins. 52 Of course, any such “rapid growth” would be caused, at least in part, by the estrogen regimen itself, but the rhetoric has the effect of depicting Ashley’s body as out-of-control; it is as if the imagined future Ashley, with her large breasts and uterus, is going to take over, to consume , the angelic pillow angel with her “almond sized breast buds.” The t reatment is positioned as a cure for adult womanhood as much as adult disability. Feminists have long challenged the reduction of women to their reproductive capacities, and the case of Ashley X reveals how disability both complicates and enables that reduction. On the one hand, despite the surgical focus on her reproductive organs, Ashley is understood to be completely removed from the realm of reproduction. What makes the bilateral mastectomy and hysterectomy permissible is the underlying con – viction that Ashley will never need or use her breasts and uterus. Her parents explain that the only reason to forgo the “breast-bud removal” is if child-bearing and breast- feeding are in Ashley’s future; since they are not, her breasts can be removed with – out any problem. 53 They present the hysterectomy in similar terms. i n their diagram describing the treatment, the hysterectomy is placed next to the appendectomy, sug – gesting that for Ashley, her uterus is an appendix: useless, unnecessary, and expend – able. 54 Thus, Ashley’s disabilities prevent her from being reduced to her reproductive organs; unlike nondisabled women, she is not to be understood in those terms. At the same time, however, the t reatment reveals the extent to which the female body is always and only framed as reproductive. Dvorsky’s anxieties about Ashley’s fertility suggest that disability only renders such fertility more threatening, more in need of containment and intervention. Furthermore, her parents’ presentation of her breasts and uterus as irrelevant and unnecessary testifies to the persistence of a repro – ductive use-value understanding of female bodies. The only purpose of these body parts is reproductive; if reproduction is not in one’s future, then these parts can be shed without ethical concern. The centrality of reproductive frameworks to our under – standing of what constitutes a woman or a female is what made the mastectomy and hysterectomy possible or imaginable. Ashley’s breasts and uterus were never going to serve their real purpose, so they could be dismissed. indeed, a dismissive attitude toward mastectomy and hysterectomy pervades Gun – ther and Diekema’s original article. Their approach makes sense, in that to focus on the hysterectomy qua hysterectomy might prompt questions about state sterilization protec – tions. But their discussion of the procedure makes clear that they had no real concerns about it; sterilizing someone like Ashley takes on the appearance of common sense. i ndeed, they acknowledge concerns about forced sterilization only to brush them away: Hysterectomy in children, particularly in the disabled, is controversial and invari – ably associated with the negative connotations and history of forced “sterilization.” But in these profoundly impaired children, with no realistic reproductive aspira – tions, prophylactic hysterectomy has several advantages as an adjunct to high-dose estrogen treatment. 55 Kafer, Alison. Feminist, Queer, Crip, Indiana University Press, 2013. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/uwinnipeg/detail.action?docID=1189107. Created from uwinnipeg on 2021-01-01 15:48:26. Copyright © 2013. Indiana University Press. All rights reserved. At the Same Time, Out of Time | 57 placing “sterilization” in scare quotes suggests that Gunther and Diekema do not see it as a real concern, almost as if it were not an accurate description of a hysterectomy. The history of forced sterilization apparently has no bearing on cases of such profound impairment. n or, apparently, do feminist critiques of sterilization, as the procedure is completely degendered in this passage. They describe hysterectomy in children , as if boys also have hysterectomies, as if there were no gendered dimension to such proce – dures. 56 Or, perhaps, the use of “children” is an indication that Diekema and Gunther do not recognize disabled children as gendered at all; they cannot be boys or girls because both categories presume an able-bodied/able-minded norm. The t reatment is thus a surgical manifestation of the conceptualization of Ashley as a permanent child. As a child, Ashley has no need of reproductive organs; as a disabled person, she has no sexuality. maintaining her small size and keeping her bat-chested and infertile ensures that her physical appearance matches her cognitive functioning, and that both rebect the lack of sexuality befitting a disabled person/baby. At first blush, it makes no sense to describe Ashley as cured or the t reatment as a kind of cure for her condition. The t reatment did not improve her cognitive or physi – cal functioning nor was it intended to do so. Yet it is undoubtedly a curative response to disability. Ashley had to be cured of her asynchrony, at least to the fullest extent possible. she also had to be freed of the specter of her future body, the full-sized, large- breasted, menstruating and fertile body to come. Ashley had her imagined body held against her, and held against her in both senses of the phrase: it was this imagined body that justified the t reatment, and it was this imagined body that became grotesque when compared to her present body. “ t owards a Better Quality of Life for ‘ pillow Angels’” Ashley’s parents and doctors are concerned not only about Ashley’s future (and future body), both real and imagined, but also about the futures of other disabled children. The very fact of their writing proves as much, with each publication geared toward presenting the t reatment as effective, morally permissible, and ethically appropri – ate for others. Blogging enables Ashley’s parents to communicate with other families worldwide and generates press coverage to further their message; publishing in medi – cal journals is a way for Gunther and Diekema to gain peer validation, approval, and, ultimately, adoption of a new treatment beyond the featured case. One need look no further than the title of Gunther and Diekema’s article for proof that they see the growth-attenuating estrogen therapy as having an application beyond Ashley: “A new Approach to an Old Dilemma.” The “old dilemma” is how best to care for children with severe disabilities, particularly how to keep them out of nursing homes and state institutions; the “new approach” to this problem is growth attenua – tion (and its accompanying surgeries). 57 i ndeed, they frame their whole article in terms of the struggle against institutionalization. The first sentence of the article sets this tone, noting that the “American Academy of p ediatrics recently endorsed the goal of Kafer, Alison. Feminist, Queer, Crip, Indiana University Press, 2013. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/uwinnipeg/detail.action?docID=1189107. Created from uwinnipeg on 2021-01-01 15:48:26. Copyright © 2013. Indiana University Press. All rights reserved. 58 | At the Same Time, Out of Time Healthy People 2010 to reduce the number of children and youth with disabilities in congregate care facilities to zero by the year 2010.” 58 For Gunther and Diekema, such an ambitious goal both requires and justifies bold new approaches such as growth attenu – ation; it also requires other doctors to take up the practice with their own patients. Throughout the piece, Gunther and Diekema stress the efficacy of high-dose estrogen treatment in order to make the case for its use with other disabled children. Quite simply, their goal is to make an argument for the careful application of such a treatment strategy in nonambulatory, profoundly impaired children. We believe that foreshorten – ing growth in these children could result in a positive benefit in the quality of life for both child and caregiver, and we propose that in situations in which parents request such an intervention, it is both medically feasible and ethi – cally defensible. 59 As this passage suggests, Gunther and Diekema see the t reatment as more appro- priate for some children than others (“nonambulatory, profoundly impaired chil – dren”), but they refrain from setting out strict or definitive criteria, opening the door for even wider applicability. Aware that the t reatment might be controversial, they suggest the formation of a decision-making board to determine the appropriateness of the treatment in particular cases; this recognition of the need for outside observers proves that they imagined the t reatment as having a life beyond Ashley. s imilarly, Ashley’s parents imagine their blog as a resource for other parents seek – ing such treatments for their children; the subtitle of the blog makes this desire plain: “ t owards a Better Quality of Life for ‘ pillow Angels.’” The plural “angels” makes clear that they do not see Ashley as a unique case. “ it is our hope,” they explain, “that this treatment becomes well-accepted and available to such families, so they can bring its benefits to their special needs child if appropriate and at an optimal age in order to obtain the most benefits.” They insist that the blog is not a defense or justification of the t reatment but rather a place to “share their learned lessons.” 60 to that end, they offer a one-page summary of the t reatment—“The ‘Ashley treatment’ for the wellbe- ing of ‘ pillow Angels’”—that breaks down each component of the t reatment in terms of its primary and secondary benefits to Ashley. They urge other parents interested in the t reatment to contact them for advice and assistance, stressing that the t reatment is not limited to girls; in fact, they suggest, “it even makes more sense in [boys’] case, since boys tend to grow taller and bigger.” 61 Ashley’s parents claim to have heard from “about a dozen” families who have successfully acquired the t reatment for their children (both boys and girls). Other families have apparently tried to do so, but without success; the blog mentions a family whose request was denied at the last minute, not by the ethics committee but because of “ pr concerns.” 62 more promisingly, from Ashley’s parents’ perspective, is Kafer, Alison. Feminist, Queer, Crip, Indiana University Press, 2013. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/uwinnipeg/detail.action?docID=1189107. Created from uwinnipeg on 2021-01-01 15:48:26. Copyright © 2013. Indiana University Press. All rights reserved. At the Same Time, Out of Time | 59 the growing acceptance of growth attenuation by pediatric specialists. On their blog, they mention a packed session on growth attenuation at the 2008 pediatric Academic s ocieties meeting; according to a doctor present at the session, “half of the room said they had been approached by a family seeking growth attenuation, and about a dozen raised their hands when asked if they had offered it to a family.” 63 m oreover, the recent report by the s WG proves that Ashley’s parents and doctors have been successful in getting the medical and bioethics communities to take the t reatment seriously; the group’s finding that growth attenuation is morally permissible under certain con – ditions and guidelines suggests that the practice may very well become more com – mon. 64 e ven when the t reatment first made news, and the voices of critics were more prominent, many observers saw the procedures as acceptable. A 2007 msn BC poll, for example, found that 59 percent of respondents supported the decisions by Ashley’s parents. 65 r eading the “testimonials” and “letters of support” posted on the parents’ blog drives home how persuasive Ashley’s parents and doctors have been in making their case. Countless medical professionals, caregivers, and parents of disabled children have written to voice their support and, often, their wish that the t reatment had been available to the people in their care. m any of these responses illustrate the slippery expansiveness of categories like “pillow angel” and “severely disabled.” While Ash – ley’s parents, her doctors, and ethicists have all offered guidelines for the degree of impairment required for the t reatment to be appropriate (the most common criteria are “nonambulatory” and “noncommunicative”), those parameters are not universally accepted. 66 One parent writes, for example, i am the father of a child (now 16) born with spina Bifida. Whitley is paralized [sic] from the waist down. We were talking about your daughter and the treatment that you were giving Ashley. . . . Whitley agrees with me that if she was much smaller the effort she would need to “get around” would be much easier. she weighs about 120 lbs and is 4’11” tall. she is a handful to lift. God bless you and Ashley and keep up the good work for her, God is guiding you in a good direction. 67 Whitley and her father would perhaps not get their wish for the t reatment; not only is she likely too old to benefit, an ethics committee might not approve its use with some – one of her level of impairment. she is able not merely to communicate, but to evaluate her situation and express her own desires; she may not be able to walk, but she is able to “get around.” she is not impaired enough, in other words, to qualify for the t reat- ment, at least according to the criteria recommended by the s WG. But, according to her father, she is sufficiently impaired. His comments reveal that the attempt to draw bright lines between classes of disability is rarely successful; one person’s “severe” may be another’s “moderate” or “mild.” s upporters of the treatment insist that it is to be used only in rare cases, cases of “profoundly impaired” children, and that concerns of its being expanded to cover ever-broader categories of disability are overblown. They Kafer, Alison. Feminist, Queer, Crip, Indiana University Press, 2013. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/uwinnipeg/detail.action?docID=1189107. Created from uwinnipeg on 2021-01-01 15:48:26. Copyright © 2013. Indiana University Press. All rights reserved. 60 | At the Same Time, Out of Time may be right; yet, as Whitley’s father makes clear, defining “profound” impairment constitutes contested, and slippery, terrain. The Future Will Be privatized: The Ashley Case in Context Discourses surrounding the Ashley t reatment serve as a template not only for future medical interventions or standards of care but also for how to view the place of disabil – ity and caregiving in the early twenty-first century. The future invoked by the Ashley treatment is a wholly privatized one: disability and disabled people belong in the pri – vate sphere, cared for by and within the nuclear family; and the nuclear family should be the sole arbiter of what happens within it. This is not to say that such cases have no bearing on the public sphere, but rather that the public sphere is to have little bearing on such cases. e ven as the case is debated in public, it is repeatedly cast by supporters of the t reatment as a private matter. We can see traces of this position in the family’s insistence that there was no need for judicial review in this case. i n their response to the W pA s investigation, they go so far as to suggest that judicial oversight should never play a role in private, familial deliberations involving children like Ashley: While we support laws protecting vulnerable people against involuntary steriliza – tion, the law appears to be too broadly based to distinguish between people who are or can become capable of decision making and those who have a grave and unchang – ing medical condition such as Ashley, who will never become remotely capable of decision making. r equiring a court order for all hysterectomies performed on all disabled persons regardless of medical condition, complexity, severity, or prognosis puts an onerous burden on already over-burdened families of children with medical conditions as serious as Ashley’s. 68 This rejection of judicial oversight dovetails with long-standing cultural presump – tions about the objectivity and authority of Western medicine. Within this framework, doctors and scientists are objective observers of the truth of the body, uniquely able to read, interpret, and understand the mind and body. Logically, then, medical experts are better able to evaluate and adjudicate questions of medical ethics because they can bracket their own political or emotional investments and focus only on the case at hand. They are able, as Donna Haraway puts it, to perform the “god trick of seeing everything from nowhere,” making decisions free from bias or subjective opinion. 69 Dr. Diekema’s response to the W pA s recommendations serves as a case in point. Chal – lenging the W pA s demand for the addition of disability advocates to hospital ethics committees, Diekema asserts that “ethics committees are not for people with political agendas.” 70 With this claim, Diekema positions people living with disability—family members, disability advocates, and disabled people, i.e., those constituting community members within the framework of the W pA s report—as political actors in ways that doctors and bioethicists are not. s uch professionals apparently have no such “political agendas” and therefore are the only proper members of ethics committees. Families— such as Ashley’s parents—play an integral role in medical decisions, but only in terms Kafer, Alison. Feminist, Queer, Crip, Indiana University Press, 2013. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/uwinnipeg/detail.action?docID=1189107. Created from uwinnipeg on 2021-01-01 15:48:26. Copyright © 2013. Indiana University Press. All rights reserved. At the Same Time, Out of Time | 61 of their own families’ cases; their agendas turn political if directed outward, beyond their individual situations. noteworthy is Diekema’s depoliticization not only of doc – tors and bioethicists but of the whole decision-making process. Both disability and decisions about disability are private concerns rather than political ones. Thus, parents, with guidance from doctors, are the only ones with standing in such cases. As Ashley’s parents explain on their blog, “ in our opinion, only parents with special-needs children are in a position to fully relate to this topic. u nless you are living the experience, you are speculating and you have no clue what it is like to be the bedridden child or their caregivers.” 71 Leaving aside for the moment their assump – tion that parents are always the best—indeed the only—spokespeople for disabled chil – dren, i want to focus on how their rhetoric excludes all other voices from this debate. p arents are not only the ultimate arbiters but also the only ones with any right to speak or rebect on the case; both decision making and debate belong only within the realm of the family. As a result, outside observers are invited to participate only within the terms of the parent-child relationship. m any editorials, commentaries, and blogs personalized and thereby privatized the debate by phrasing it exclusively in terms of familial questions: What would you do if this were your child? Who would you want caring for your child? How would you feel if the state/the medical establishment/dis – ability activists took away your right to determine your child’s care? What would you do if an ethics committee refused you access to a treatment you knew was in your family’s best interest? The very phrasing of the questions reveals how pervasive this private framing is. One of the main themes running throughout critiques of the Ashley t reatment is the need for more social support for parents of disabled children. s upporters of the t reatment counter that such services are currently unavailable and that to “abandon” Ashley’s parents to “these harsh social and economic realities” would be cruel; “Ash – ley does not live in a utopian world,” s arah shannon notes in Pediatric Nursing, and to focus on the need for accessible houses or in-home attendant care is a “utopian view of care.” 72 shannon’s read of current realities is unfortunately accurate, but call – ing any and all talk of social supports as utopian and therefore unreasonable denies the possibility of different futures and different presents. As Adrienne Asch and Anna s tubblefield explain, there are already-existing practices and technologies that make home care easier, such as mechanized lifts that can assist with transfers. m oreover, many “full-size” adults live successfully in independent settings and receive care out – side of institutions, even without the kind of growth-stunting interventions that the t reatment involves. 73 Completely brushing aside frank talk of social supports renders these kinds of options invisible, such that the t reatment appears as the only real choice parents can make for their children. Thus the dilemma described by Ashley’s doctors is a choice between the t reat- ment and institutionalization: if we let her imagined grotesque body come into being, then the only possible future that can await her is the one of the institution, or what Kafer, Alison. Feminist, Queer, Crip, Indiana University Press, 2013. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/uwinnipeg/detail.action?docID=1189107. Created from uwinnipeg on 2021-01-01 15:48:26. Copyright © 2013. Indiana University Press. All rights reserved. 62 | At the Same Time, Out of Time Harriet mcBryde Johnson calls the “disability gulag.” 74 Ashley must be protected, then, from that future location and the future body that would put her there; the t reatment is her only hope for a future away from the institution. That this is a false choice—for surely these are not the only two options, and the t reatment by no means guarantees that she will never be institutionalized—does not take away from the rhetorical power of this justification for the t reatment. s upporters of the t reatment make a compelling case, and its power is one of the reasons why this story is essential to an analysis of crip futures. The doctors involved in the case, Ashley’s parents, their supporters: all draw on rhetoric and ideas nourished and developed from within disability rights movements, but to far different effects. i n their initial article, for example, Gunther and Diekema stress the importance of mov – ing as many disabled children as possible out of institutions and other long-term care facilities, keeping them with their families and in their communities. Ashley’s parents and their supporters similarly tout the importance of keeping Ashley at home, allow – ing her to grow up with her siblings and surrounded by people who love her rather than isolated in an institution. ( indeed, they assert that they would never place Ashley in an institution, treatment or not.) These are undoubtedly goals shared by, and long advocated by, disability rights and independent living movements. The use of these arguments to justify growth attenuation, sterilization, and mas – tectomy—as if such practices were necessary to stave off institutionalization—requires those of us concerned and invested in these movements to challenge this appropria – tion of language and ideology. We need to be much more vigilant and aware of the risks inherent in touting the importance of family involvement and family care. t oo easily, those calls can be reinterpreted to mean that the only care worth supporting is that provided by relatives, inadvertently demonizing and pathologizing the use of paid attendants. This is not to say that family members who provide attendant care for their disabled relatives should not themselves be compensated for their work; indeed, i support consumer-directed attendant services that allow disabled people to hire their own attendants, including family members. But, as Laura Hershey explains, seeing attendant care as something best provided by a family member too easily perpetuates the idea that disability is a private problem concerning the family that has no place in the public sphere. This attitude, in turn, leads to the continued devaluation of care – giving; abysmal wages and working conditions are justified on the basis that family members—almost always women—would be doing this work anyway and therefore any compensation, no matter how meager, is sufficient. 75 m oreover, casting disability as a private, familial problem, one properly confined to the home, makes it possible to remove caregiving—regardless of whether it is provided by a relative, regardless of whether it is compensated—from the political realm of public policy. This attitude suggests that the only thing that matters is having a loving relative by one’s side, rather than attending to the resources, support, and training that a loved one might need to make such caregiving sustainable over the long term. 76 Kafer, Alison. Feminist, Queer, Crip, Indiana University Press, 2013. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/uwinnipeg/detail.action?docID=1189107. Created from uwinnipeg on 2021-01-01 15:48:26. Copyright © 2013. Indiana University Press. All rights reserved. At the Same Time, Out of Time | 63 unknown Futures, n arrowed Futures: m easuring “Quality of Life” The Ashley treatment has been presented as necessary to Ashley’s quality of life. Ash – ley will be “better off ” as the result of these interventions, the story goes; her parents and doctors had to intervene in order to protect her from future harms. “Quality of life” is a familiar refrain in discussions of disability, as the term has often been used as a measure of the worth of disabled people’s lives. “ measure” is perhaps too precise a term, as the meaning or criteria of “quality” of life are often taken to be common sense. m any people, regardless of dis/ability, may use the term to examine their own experiences, but disabled people often find their own quality of life described by oth – ers as if it were self-evident in their appearance or diagnosis; such discussions almost always include descriptions of the disabled person’s (assumed) level of function and pain. 77 Yet accurately evaluating function is not as easy as it might seem. i f a disabled person has never been given any kind of adaptive therapy or training, or if someone has no access to adaptive equipment (or only to substandard equipment), then one’s function might be much lower than one’s ability. Quality of life, then, is affected by one’s access to resources and bodies of knowledge rather than a necessary fact of the body/mind. indeed, descriptions of another’s pain and suffering often rely more on assumption than fact, as do presumptions about what level of function is required for a good quality of life. 78 As a result, analyses of other people’s lives, ones intended to demonstrate a certain quality of life (or lack thereof ), are often ambiguous and contradictory. Descriptions of Ashley are no different, rife with inconsistencies about the nature of her life. Ashley’s doctors and parents describe her as having the cognitive functioning of an infant, but her parents also talk about her experiencing confusion, feeling boredom, and having musical preferences (she reportedly waves her arms along with music that she likes). r eading each of these reactions in relation to each other suggests that Ashley’s cogni – tive abilities might be more advanced than justifications for the t reatment assert; or, perhaps, her family is reading more into her behaviors than others can see. i n either case, the combination of observations suggests that function and quality of life are not as straightforward as some analyses might claim. Given someone like Ashley, who “cannot communicate,” these questions of quality of life become all the more compli – cated; she cannot tell us what she thinks about her life. The issue of communication is itself complicated. According to her parents and doctors, Ashley is unable to communicate and will always remain so. This lack of communication was one of the factors used to justify the t reatment (and one the s WG extended, casting “noncommunicative” as one of the criteria used to evaluate the appropriateness of growth attenuation). But, again, as i note above, if Ashley’s parents are able to track boredom, confusion, and musical preferences in Ashley’s reactions, then she does not sound completely noncommunicative. p erhaps she could eventually develop a means of communicating with others; in their analysis Kafer, Alison. Feminist, Queer, Crip, Indiana University Press, 2013. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/uwinnipeg/detail.action?docID=1189107. Created from uwinnipeg on 2021-01-01 15:48:26. Copyright © 2013. Indiana University Press. All rights reserved. 64 | At the Same Time, Out of Time of the Ashley case, Adrienne Asch and Anna stubblefield remind us that “there is a long history of experts underestimating the cognitive abilities of people who appear to be profoundly intellectually impaired.” 79 s ome parents of children with “severe” or “profound” disabilities have reported seeing changes in behavior or capacity over time, despite the fact that their children were given static, unchanging prognoses. They report that their children changed in their ability to interact with the world even if the world remained unable to recognize their interactions as communication or intent. 80 Ashley may never develop the ability to speak or interact in a normative fashion, but perhaps her “reactions” could be extended or enhanced through tech – nologies such as assisted communication. Assisted communication—which often involves an aide helping a disabled person point toward letters, words, symbols, or pictures on a communication board (or, increasingly, electronic device)—remains controversial, but it does at least raise the question of whether Ashley’s noncom – municative status is permanent or complete. There certainly are examples of people who claim to have received similar diagnoses and yet eventually learned ways to communicate with others. 81 Given that possibility, why engage in such an extensive medical intervention based in part on the fact of her noncommunication? is there not a possibility that new technologies could enable some form of communication in the not-too-distant future? i cannot know the answer to that question, and asking it seems only to raise a whole other set of problems and complexities. s tressing that Ashley might “get better” either through technological interventions or therapy (or both) suggests that it is the “getting better” that renders the t reatment offensive or inappropriate. And if that is the case, then the treatment is appropriate as long as we make sure we are getting the “right” children, the ones who do not have a chance of improving their function. But drawing lines between levels of impairment is notoriously difficult and, as e va Kittay points out, suggests that some people are more deserving of ethical concern and con – sideration than others. 82 r ather the key seems to be to focus on the unknowability inherent in the case. 83 There is no way to know for certain whether the t reatment improved Ashley’s quality of life. We have no baseline of “quality” by which to measure, for Ashley or for any of us. s upporters of the t reatment claim medical evidence for their assertion that the t reatment had a positive effect, but they are extrapolating from other cases or other situations. Ashley’s parents’ long-term quality of life likely improved, given that Ash – ley will remain easier to lift, and Ashley’s quality of life is bound up in her parents’; if they are doing well, the odds are higher that she is doing well. But, again, we cannot know, not for certain, whether the t reatment benefited Ashley’s quality of life. Were the interventions a success in terms of reducing Ashley’s pain? i don’t know; i can’t know. The surgery itself likely resulted in pain both physical and psychological, but perhaps that pain has faded from Ashley’s memory. p erhaps that pain, now passed, is less significant than the constant pain of compressed breasts or the recurring pain Kafer, Alison. Feminist, Queer, Crip, Indiana University Press, 2013. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/uwinnipeg/detail.action?docID=1189107. Created from uwinnipeg on 2021-01-01 15:48:26. Copyright © 2013. Indiana University Press. All rights reserved. At the Same Time, Out of Time | 65 of menstrual cramps. Or perhaps not. We cannot know the answers to these questions, but they are presented in treatment-supportive discourses as self-evident. The claim that the t reatment reduced Ashley’s pain is taken as fact. m issing from this discussion of Ashley’s quality of life is the possibility of plea – sure; how might the t reatment have foreclosed upon a range of potential sites and sources of pleasure? i t is possible that Ashley would have developed the large breasts that reportedly run in her family, and it is possible that she would have experienced discomfort from them. i t seems equally possible, however, that she would have expe – rienced pleasure from those imagined large breasts: the sensation of her shirt mov – ing against her skin, or of her skin moving against her sheets, or of her own arms brushing against her breasts. e ven the tight chest straps holding her in her chair could have been sources of pleasure: perhaps she would enjoy the sensation of support, or take pleasure in the alternation between binding and release as she was moved in and out of her wheelchair. The inability or unwillingness to imagine these pleasures is a manifestation of cultural approaches to female sexuality and disability. i t is seemingly inconceivable to imagine Ashley’s body—her disabled female body—as the source of any sensation other than pain. We have few tools for recognizing female sexuality, particularly disabled female sexuality, as positive; nor can we recognize the potential for a self-generated and self-directed sexuality. Ashley’s parents see the mastectomy as offering an “additional benefit to Ashley” beyond its elimination of imagined future pain; according to them, the mastectomy will also prevent “sexualization towards [her] caregiver.” 84 Their syntax is odd here. t o what does the “towards” refer? i s it meant to imply the possibility of a caregiver taking sexual liberties with Ashley, so that the mastectomy prevents caregivers from sexual – izing her? Or does it refer to the possibility that Ashley might feel sexual when touched by her caregiver? i n either case, it is a troubling rationale for the surgical removal of her breast buds. A lack of breasts does not render one safe from sexual assault or abuse, and many would argue that such assault is more the result of a desire for power and control than of sexualization. 85 Or, if their concern is more about Ashley feeling sexual (and it is profoundly unclear what they would imagine that to mean, given their posi – tioning of her as a noncommunicative infant), then the surgery has been justified, in part, on the need to diminish Ashley’s access to pleasurable sensations. m aybe Ashley experiences pleasure from being held or hugged, from being bathed in warm water or toweled off, from nestling into a fresh bed or feeling the sun on her face. And if we can recognize those physical sensations as human pleasures to which even the disabled are entitled, then why deny her the future possibility of feeling the sensations of her breasts? 86 The t reatment foreclosed on some of the ways Ashley might experience, or understand, or interact with her own body. Her inability to describe such interactions or even to understand them intellectually does not necessarily translate into an inabil – ity to feel them. Kafer, Alison. Feminist, Queer, Crip, Indiana University Press, 2013. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/uwinnipeg/detail.action?docID=1189107. Created from uwinnipeg on 2021-01-01 15:48:26. Copyright © 2013. Indiana University Press. All rights reserved. 66 | At the Same Time, Out of Time At the same time, Out of t ime; or, Looking for Ashley among Crips and Queers “Out of time”: i choose this phrase for its multiple meanings. First, Ashley’s being “frozen in time” is a casting out of time; the development of her female body has been arrested, removing her from expected patterns of female development and aging. s ec- ond, the use of Ashley as a “case study” only exacerbates this frozen-ness, as scholars and activists—including myself—continue to focus on what happened to Ashley in the past, as if the intervening years never happened, as if she weren’t continuing to live beyond the dates of our analyses. Third, the t reatment itself was justified on the basis of Ashley’s being always already out of time: her mind and body were so asyn – chronous that medical intervention was necessary to prevent her from falling further out of time. Finally, Ashley has run out of time. We are too late to stop the t reatment, too late to interrupt this representation of her as endangered by her future self or as embodied asynchrony. to return then to where i started: i n thinking about crip futurity, i find myself haunted by Ashley X. Of course, Ashley is not the only one doing the haunting. Ash – ley’s parents suggest that there have been other pillow angels who have undergone the t reatment, and, if so, their stories remain unknown; i am haunted by that unknown. i think also of those disabled children who were altered in more traditional but no less invasive ways, children whose stories have not been seen as worth remembering, let alone preserving or disseminating. 87 p erhaps the interventions in their bodies were considered a matter of course, a part of the standard of care, and therefore not prompt – ing judicial review or public response; or maybe they were children who were seen not as figures in a sentimental narrative but as the inevitable and unremarkable casualties of poverty, violence, and inequality. p erhaps the details of their lives were unable to capture the public imagination in the same way a white pillow angel could. s enti- mentality has historically and culturally been linked with white middle-class femi – ninity, and Ashley’s representation as a “pillow angel” calls to mind these racialized discourses of domesticity and passivity. As p atricia Williams points out, the “pillow angel” label held sway in public discussions of the case in no small part because of Ash – ley’s race and class. Williams doubts, and with good reason, that “a poor black child would have been so easily romanticized as a ‘pillow angel.’” 88 Williams uses the case as a reminder that we are more concerned with the quality of some lives than others (even as the steps ostensibly taken to “ensure” that quality reveal profound ableist and misogynist anxiety). i draw on this language of haunting to mark the difficulty of this case, to recog – nize the power with which it hit. i n the years since this story first broke, conversations about the Ashley case have repeated and repeated themselves, a citational frequency that reveals the emotional toll the case took—and continues to take—on disabled people. i know that i continue to feel a mixture of anger, shame, and betrayal about Kafer, Alison. Feminist, Queer, Crip, Indiana University Press, 2013. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/uwinnipeg/detail.action?docID=1189107. Created from uwinnipeg on 2021-01-01 15:48:26. Copyright © 2013. Indiana University Press. All rights reserved. At the Same Time, Out of Time | 67 the Ashley case: betrayal that mainstream feminists largely kept silent about the case, perhaps seeing it as only a “disability” issue; anger that these medical and surgical interventions were allowed to happen and will likely happen again; and shame that we could not save her, that we cannot reach her.Yet supporters of the t reatment argue that disability activists have no bearing on this case because Ashley is too severely disabled to be considered a disabled person. 89 Ashley’s parents, for example, refer to her as “permanently unabled” in order to dis – tinguish her from other disabled people; “unabled” is a “new category” that includes “less than 1% of children with disability.” 90 Although she does not argue for this kind of new terminology, Anita J. t arzian agrees that it might be a “misnomer” to call Ash – ley disabled. Both disability rights and people-first or self-advocacy movements are concerned with individuals who “have some level of cognitive capacity,” she explains, which means that these movements do not have the tools or the rhetoric to address those with “severe neurological impairments.” 91 p redominant models of disability studies and activism too often do skim over such people, and Ashley’s situation is not, and never has been, similar to most of us working in disability studies. How, then, are we to understand the differences between our experiences even as we name us all as disabled? Or, to move in the other direction, how might such an identification—we are all Ashley X—work to trouble the binaries of functional/nonfunctional, physical/developmental, or moderate/severe disability? What work are we enabled to do by placing Ashley in the center of disability scholar – ship and activism, or by positioning her as part of disability communities and move – ments? i f crip theory and critical disability studies remind us to attend not only to the experiences of disabled people but also, and especially, to the ways in which disability and ability work in the world, then we need to contest this representation of some minds and bodies as beyond the reach of disability analysis and activism. i want to caution, then, against viewing Ashley as exceptional or her case as a spectacular anomaly. After all, there remains a very real possibility that growth attenu – ation (and its attendant surgeries) will be performed on other disabled kids, which means that we cannot dismiss the case as a one-time event. m ore to the point, Ashley herself is not wholly unlike the other disabled people inhabiting the pages of this book or the movements and scholarship discussed here. t o see her differently, to accept the representation of her as “unabled” rather than “disabled,” is to accept an ableist logic that positions impairment—if “severe” enough—as inherently depoliticizing; “unabil – ity” becomes the category that allows “disability” to separate itself from those bodies/ minds that remain in the margins. We will remain haunted by the Ashley case, in other words, if we refuse to look for her among crips and queers, if we refuse to recognize her as part of our work. How might we imagine futures that hold space and possibility for those who com – municate in ways we do not yet recognize as communication, let alone understand? Or futures that make room for diverse, unpredictable, and fundamentally unknowable Kafer, Alison. Feminist, Queer, Crip, Indiana University Press, 2013. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/uwinnipeg/detail.action?docID=1189107. Created from uwinnipeg on 2021-01-01 15:48:26. Copyright © 2013. Indiana University Press. All rights reserved. 68 | At the Same Time, Out of Time experiences of pleasure? if, as i discussed in the previous chapter, queerness entails nonheteronormative approaches to temporality, then how might we learn to approach asynchronous bodies and minds as something other than grotesque or pathological? r eading Ashley through the lens of temporality is likely going to require changes to both our theories of disability and our approaches to queer/crip futurity. As we inter – vene in the representation of Ashley as abnormally asynchronous or grotesquely fer – tile, as we interrupt the depiction of her as developmentally and temporally other, we must take care, as feminist disability scholars and crip theorists, not to write Ashley out of our own desirably disabled futures. Kafer, Alison. Feminist, Queer, Crip, Indiana University Press, 2013. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/uwinnipeg/detail.action?docID=1189107. Created from uwinnipeg on 2021-01-01 15:48:26. Copyright © 2013. Indiana University Press. All rights reserved. 192 | Notes to Pages 46–49 100. Chandra talpede mohanty and Biddy m artin offer insight into the trope of “home” in feminist theory, and in so doing they craft a lineage including both m innie Bruce pratt and Ber- nice Johnson r eagon. Chandra t alpede mohanty and Biddy m artin, “What’s Home Got to Do with i t?” in Feminism Without Borders: Decolonizing Theory, Practicing Solidarity (Durham, nC: Duke u niversity p ress, 2003), 86–105; see also m innie Bruce pratt, Rebellion: Essays, 1980–1991 (Ann Arbor, mi : Firebrand, 1991); and Bernice Johnson reagon, “Coalition politics: turning the Century,” in Home Girls: A Black Feminist Anthology , ed. Barbara smith (new York: Kitchen t able p ress, 1983), 356–68. Chapter 2 1. D. F. Gunther and D. s . Diekema, “Attenuating Growth in Children with p rofound Devel- opmental Disability: A n ew Approach to an Old Dilemma,” Archives of Pediatrics and Adolescent Medicine 160, no. 10 (2006): 1014. 2. i bid., 1014. 3. i bid. 4. Following Laura Hershey, i capitalize “treatment” to distinguish between the specific set of surgical and medical interventions used on Ashley (what her parents term “the Ashley t reatment”) and the more abstract, general notion of “treatment” as any set of practices that attempt to solve a problem. As Hershey explains, referring to the interventions as a “treatment” accepts and perpetu – ates the notion that Ashley’s body was sick or wrong and in need of a cure. Laura Hershey, “ stunting A s h le y,” off our backs 37, no. 1 (2007): 8. 5. Gunther and Diekema, “Attenuating Growth in Children,” 1014. 6. Although bloggers, journalists, and disability rights activists have tended to examine the t reatment as a whole—addressing growth attenuation, breast bud removal, and hysterectomy all at once—some of the medical and bioethics texts have separated these procedures, focusing on either the growth attenuation or the sterilization. s ee, for example, John Lantos, “it’s n ot the Growth Attenuation, it’s the sterilization!” American Journal of Bioethics 10, no. 1 (2010): 45–46; and Ben – jamin s . Wilfond, p aul steven m iller, Carolyn Korfatis, Douglas s . Diekema, Denise m. Dudzinski, s ara Goering, and the s eattle Growth Attenuation and e thics Working Group, “navigating Growth Attenuation in Children with p rofound Disabilities: Children’s i nterests, Family Decision-making, and Community Concerns,” Hastings Center Report 40, no. 6 (2010): 27–40. 7. Lennard Davis describes disability as “a disruption in the visual, auditory, or perceptual field as it relates to the power of the gaze.” As we will see, one of the lines of defense for the t reatment was that it would make it easier for people to see and interact with Ashley; the treatment would alleviate the alleged visual asynchrony of Ashley’s mind and body. Lennard J. Davis, Enforcing Normalcy: Dis – ability, Deafness, and the Body ( new York: Verso, 1995), 129. 8. Gunther was Ashley’s endocrinologist; along with Dr. Douglas Diekema, he is one of the doctors most closely identified with the Ashley t reatment. Gunther committed suicide in september 2007, several months after an investigative report determined that the hospital had acted improperly in sterilizing Ashley. i n the years since Gunther’s death, Diekema has continued to write about the case, often with Dr. n orman Fost. 9. Gunther and Diekema, “Attenuating Growth in Children,” 1013. 10. Ashley’s m om and Dad, The “Ashley Treatment”: Towards a Better Quality of Life for “Pil – l o w A n g e l s ,” march 25, 2007 http://pillowangel.org/Ashley%20 treatment%20v7.pdf; Wilfond et al., “ n avigating Growth Attenuation in Children,” 27. 11. The effect of the t reatment on Ashley’s growth, however, is a matter of some debate. Gunther and Diekema explain that the treatment had to be started quickly because Ashley had already begun to show signs of a growth spurt; what they do not mention is how much of her final height she had Kafer, Alison. Feminist, Queer, Crip, Indiana University Press, 2013. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/uwinnipeg/detail.action?docID=1189107. Created from uwinnipeg on 2021-01-01 15:49:44. Copyright © 2013. Indiana University Press. All rights reserved. Notes to Pages 49–51 | 193 already achieved by the time the estrogen regimen began. As rebecca Clarren reports, there is a pos- sibility that Ashley was already approaching her maximum size; perhaps the t reatment had only a small effect. r ebecca Clarren, “Behind the p illow Angel,” Salon, February 9, 2007, http://www.salon. com/news/feature/2007/02/09/pillow_angel/index.html. 12. As described in the investigative report, “The Washington p rotection and Advocacy system (W pA s) is the federally mandated protection and advocacy ( p&A) agency for the state of Washing – ton. The p &As, which exist in every state and territory, are ‘watchdog’ agencies with legal authority under federal statutes to investigate allegations of abuse and neglect of persons with disabilities and to advocate for their legal and human rights.” W pA s changed its name to Disability r ights Washington in 2007 and is part of the n ational Disability rights network. Washington p rotection and Advocacy s ystem, “ executive s ummary— investigative r eport regarding the ‘Ashley t reatment,’” Disability Rights Washington , 1, last modified October 1, 2010, http://www.disabilityrightswa.org/home/ execu – tive_ summary_ investigative report regardingtheAshley treatment.pdf/view?searchterm=ashley. s ee also http://www.disabilityrightswa.org/. 13. Washington p rotection and Advocacy s ystem, “executive s ummary,” 1. 14. The committee did, however, sign off on the other two pieces of the Ashley t reatment, the mastectomy and the growth attenuation regimen: “[ i]t was the consensus of the Committee members that the potential long term benefit to Ashley herself outweighed the risks; and that the procedures/ interventions would improve her quality of life, facilitate home care, and avoid institutionalization in the foreseeable future.” As Clarren notes in her coverage of the case, there were deep divisions in the committee and at the hospital; many at Children’s felt uncomfortable with the team’s decisions. Washington p rotection and Advocacy s ystem, exhibit L, “ special CH rmC ethics Committee m eet- ing/Consultation,” Investigative Report Regarding the “Ashley Treatment,” may 4, 2004, http://www. disabilityrightswa.org/home/ exhibits_K_ t_investigative report regardingtheAshley treatment. pdf, 1; Clarren, “Behind the p illow Angel.” 15. Washington p rotection and Advocacy s ystem, exhibit O, “Letter from Larry Jones,” Inves – tigative Report Regarding the “Ashley Treatment,” June 10, 2004, http://www.disabilityrightswa.org/ home/ exhibits_K_ t_investigative report regardingtheAshley treatment.pdf, 1. 16. Washington p rotection and Advocacy s ystem, “Letter from Larry Jones,” 4. 17. i bid. 18. David Carlson and Deborah Dorfman, “Full r eport—investigative r eport regarding the ‘Ashley t reatment,’” Washington p rotection and Advocacy system, may 8, 2007, http://www.dis – abilityrightswa.org/home/Full_ report_ investigative report regardingtheAshley treatment.pdf, 14. 19. Carlson and Dorfman, “Full r eport,” 14. 20. Washington p rotection and Advocacy s ystem, exhibit t, “Agreement Between Children’s Hospital and r egional medical Center and the Washington p rotection and Advocacy system (Dis- ability r ights Washington) p romoting protection of i ndividuals with Developmental Disabilities,” Investigative Report Regarding the “Ashley Treatment,” may 1, 2007, http://www.disabilityrightswa. org/home/ exhibits_K_ t_investigative report regardingtheAshley treatment.pdf, 1–2. 21. Jessica m arshall, “Hysterectomy on Disabled us Girl Was i llegal,” New Scientist, may 9, 2007, http://www.newscientist.com/article/dn11809–hysterectomy-on-disabled-us-girl-was-illegal. html. 22. Wilfond et al., “ navigating Growth Attenuation in Children.” 23. The report does not define “communicative” or “ambulatory”; according to Dorland’s Illus – trated Medical Dictionary , “ambulatory” refers to someone “able to walk ” ( Dorland ’s offers no defini – tion for “communicative”). Dorland’s Illustrated Medical Dictionary (philadelphia: W. B. s aunders Company, 1994), 54; Wilfond et al., “ navigating Growth Attenuation in Children,” 29, 39. 24. Although he supported the group’s decision, n orman Fost asserts that “too much deference has been given to the claims of third parties” in medical decision making. He disagrees with the Kafer, Alison. Feminist, Queer, Crip, Indiana University Press, 2013. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/uwinnipeg/detail.action?docID=1189107. Created from uwinnipeg on 2021-01-01 15:49:44. Copyright © 2013. Indiana University Press. All rights reserved. 194 | Notes to Pages 51–54 working group’s conclusions that the perspectives of disabled people and disability advocates should be included in the decision-making progress and that families contemplating such decisions should be given information about disability organizations and experiences. eva Feder Kittay, on the other hand, insists that growth attenuation is never “ethically or medically appropriate,” and that limit – ing the practice to “children with profound developmental and intellectual impairments” is itself abusive and discriminatory. “ if growth attenuation should not be done on children without these impairments,” she argues, “then it should not be done on any children. t o do otherwise amounts to discrimination.” norman Fost, “Offense to Third p arties?” Hastings Center Report 40, no. 6 (2010): 30; e va Feder Kittay, “Discrimination against Children with Cognitive i mpairments?” Hastings Cen- ter Report 40, no. 6 (2010): 32. 25. Gunther and Diekema, “Attenuating Growth in Children,” 1016. 26. i bid., 1015. 27. Amy Burkholder, “ ethicist in Ashley Case Answers Questions,” CNN.com, January 11, 2007. 28. Daniel Gunther and Douglas Diekema, letter in reply to Carole m arcus, “Only Half of the story,” Archives of Pediatrics and Adolescent Medicine 161 (June 2007): 616. 29. Douglas Diekema and norman Fost, “Ashley revisited: A r esponse to the Critics,” Ameri- can Journal of Bioethics 10, no. 1 (2010): 30–44. 30. The parents never refer to the procedure as a mastectomy, only as “ breast bud removal,” but the hospital billing report clearly lists it as “ bilat simple mastectomy.” Washington p rotection and Advocacy s ystem, exhibit r, “Hospital Billing r eport,” Investigative Report Regarding the “Ashley Treatment,” march 28, 2007, http://www.disabilityrightswa.org/home/ exhibits_K_ t_investigati – ve report regardingtheAshley treatment.pdf, 3. 31. Ashley’s m om and Dad, “Ashley Treatment.” 32. This interpretation makes the absence of any mention of the mastectomy in the doctors’ original piece all the more disturbing. 33. Ashley’s m om and Dad, “Ashley Treatment.” 34. The photographs on the blog are quite remarkable, but not because of their depiction of Ashley. s een lying on her bed, or strapped into her wheelchair/stroller, she looks like an average disabled kid. What is jarring are the images of her parents and siblings, each depicted with black boxes covering their eyes and faces. For the viewer familiar with medical images of deviant bodies, it is a phenomenal switch; i am accustomed to seeing black boxes over the faces of disabled people, “freaks,” and patients, but not over the faces of the normate. Yet the effect is, surprisingly, the same. The disabled person is still clearly marked as other, as fundamentally unlike the other humans in the frame. s he is marked as to-be-seen, while the other bodies are protected from gaze. 35. Ashley’s m om and Dad, “Ashley Treatment.” 36. Amy Burkholder, “Disabled Girl’s parents Defend Growth- stunting treatment,” CNN.com, m arch 12, 2008. 37. Burkholder, “ ethicist in Ashley Case.” 38. Ashley’s p arents, “At summary,” last modified m arch 17, 2012, http://pillowangel.org/A t- s ummary.pdf. 39. John W. Jordan, “ reshaping the ‘ pillow Angel’: plastic Bodies and the r hetoric of normal s urgical s olutions,” Quarterly Journal of Speech 95, no. 1 (February 2009): 25. 40. Burkholder, “ ethicist in Ashley Case Answers Questions.” 41. m ark priestley, Disability: A Life Course Approach (Cambridge: p olity press, 2003), 67. 42. Christopher r eeve, Nothing Is Impossible: Reflections on a New Life ( new York: r andom House, 2002), 6. 43. Licia Carlson, The Faces of Intellectual Disability (Bloomington: i ndiana university p ress, 2010), 30. 44. Gunther and Diekema, “Attenuating Growth in Children,” 1016. Kafer, Alison. Feminist, Queer, Crip, Indiana University Press, 2013. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/uwinnipeg/detail.action?docID=1189107. Created from uwinnipeg on 2021-01-01 15:49:44. Copyright © 2013. Indiana University Press. All rights reserved. Notes to Pages 54–58 | 195 45. mims, “The p illow Angel Case—Three Bioethicists Weigh i n,” Scientific American, Januar y 5, 2007, http://tiny url.com/9f ycg2u. 46. Ashley’s m om and Dad, “Ashley Treatment.” 47. Gunther and Diekema, “Attenuating Growth in Children,” 1016. 48. Christopher m ims, “The pillow Angel Case.” 49. m ikhail Bakhtin describes the grotesque as a temporal category, casting a senile, pregnant hag as the perfect illustration of the grotesque for her blending of youth and old age. But, as m ary r usso argues, “for the feminist reader, this image of the pregnant hag is more than ambivalent. it is loaded with all of the connotations of fear and loathing around the biological processes of reproduc – tion and of aging.” mikhail Bakhtin, Rabelais and His World , trans. Helene iswolsky (Bloomington: i ndiana u niversity p ress, 1984), 24–27; m ary russo, The Female Grotesque: Risk, Excess, and Moder – nity (n ew York: r outledge, 1994), 63. On “matter out of place,” see m ary Douglas, Purity and Danger: An Analysis of Concepts of Pollution and Taboo (London: r outledge, 2002); on disability and the grotesque, see r osemarie Garland-Thomson, Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature (n ew York: Columbia u niversity press, 1997), 111–15; and m argrit s hildrick, Embodying the Monster: Encounters with the Vulnerable Self (London: s age, 2002). 50. George Dvorsky, “Helping Families Care for the Helpless,” i nstitute for ethics and emerg- ing t echnologies, n ovember 6, 2006, http://ieet.org/index.php/ ieet/more/809/. 51. Ashley’s parents, “A t summary,” emphasis mine. Ashley’s parents draw the distinction between breasts and breast buds on their blog, describing reports of Ashley’s breasts being removed as a media inaccuracy. They explain that “her almond-sized breast buds (not breasts) were removed.” Ashley’s m om and Dad, “ updates on Ashley’s s tory,” January 9, 2007, http://www.pillowangel.org/ updates.htm. 52. Ashley’s p arents, “At summary.” 53. Ashley’s m om and Dad, “Ashley Treatment,” 9–10. 54. Ashley’s p arents, “At summary.” 55. Gunther and Diekema, “Attenuating Growth in Children,” 1015. 56. As p atricia Williams notes, it is hard to imagine parents or doctors choosing to castrate a young boy because of fears that his penis or testicles might cause pain and discomfort. patricia J. Williams, “Judge n ot?” Nation (new York), m arch 26, 2007, 9. 57. i f we view the hysterectomy as a key component of the t reatment, however, then their “new approach” isn’t really all that new. i ndeed, this phrasing is one of several moments in which justifi- cations of the t reatment echo early eugenic arguments. m any eugenicists presented sterilization as a “humane” alternative to institutionalization; through sterilization, communities could be “pro – tected ” from the reproduction of the “feeble-minded,” and the “feeble-minded ” could be “allowed ” to return to their home communities. 58. Gunther and Diekema, “Attenuating Growth in Children,” 1013. This goal of deinstitution – alization has obviously not been met, and the rampant budget cutting underway on both the state and federal level makes progress seem unlikely. The more recent Healthy People 2020 plan stakes out a similar goal but, like the earlier report, does not include a detailed plan for its achievement. s ee Healthy People 2020 , accessed July 8, 2011, http://www.healthypeople.gov/2020/topicsobjectives2020/ over view.aspx?topicid=9. 59. Gunther and Diekema, “Attenuating Growth in Children,” 1014. 60. indeed, they criticize media reports for depicting their blog as a defense of the t reatment; on the contrary, they assert, the blog was always intended as a way to share the t reatment with other families. Ashley’s m om and Dad, “updates on Ashley’s s tory,” January 9, 2007. 61. Ashley’s m om and Dad, “Ashley Treatment.” 62. Ashley’s m om and Dad, “Third Anniversary u pdate,” January 13, 2010, http://www.pil – lowangel.org/updates.htm. For the story of one family who, with assistance from Ashley’s parents, Kafer, Alison. Feminist, Queer, Crip, Indiana University Press, 2013. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/uwinnipeg/detail.action?docID=1189107. Created from uwinnipeg on 2021-01-01 15:49:44. Copyright © 2013. Indiana University Press. All rights reserved. 196 | Notes to Pages 59–64 successfully acquired the treatment for their daughter, see Karen m cVeigh, “The ‘Ashley treatment’: e rica’s story,” Guardian (uK), march 16, 2012, http://www.guardian.co.uk/society/2012/mar/16/ ashley-treatment-ericas-story. 63. ibid. 64. indeed, according to a recent article in the Guardian, the treatment is “on the rise.” ed p ilkington and Karen m cVeigh, “‘Ashley treatment’ On the r ise amid Concerns from Disability r ights Groups,” Guardian (u K), m arch 15, 2012, http://www.guardian.co.uk/society/2012/mar/15/ ashley-treatment-rise-amid-concerns. 65. Cited in Wilfond et al., “ navigating Growth Attenuation in Children,” 27. 66. David Allen, m ichael Kappy, Douglas Diekema, and n orman Fost, “Growth-Attenuation Therapy: p rinciples for p ractice,” Pediatrics 123, no. 6 (2009): 1556–61; Gunther and Diekema, “Atten – uating Growth in Children”; and Wilfond et al., “ navigating Growth Attenuation in Children.” 67. “ testimonies from Families and Caregivers with Direct e xperience,”“Ashley Treatment,” accessed m arch 2, 2012, http://www.pillowangel.org/testimonies.htm. 68. Ashley’s m om and Dad, “ updates on Ashley’s s tory,” may 8, 2007, http://www.pillowangel. org/updates.htm. 69. Haraway distinguishes this traditional understanding of objectivity from the embodied feminist objectivity of partial perspectives and situated knowledges. Donna J. Haraway, Simians, Cyborgs, and Women: The Reinvention of Nature ( new York: r outledge, 1991), 189. 70. Carol m . Ostrom, “Child’s Hysterectomy i llegal, Hospital Agrees,” Seattle Times, may 9, 2007, http://community.seattletimes.nwsource.com/archive/?date=20070509&slug=childrens09m. 71. Ashley’s m om and Dad, “Ashley Treatment.” 72. s arah e . shannon and t eresa A. savage, “The Ashley t reatment: two Viewpoints,” Pediatric Nursing 32, no. 2 (2007): 177. 73. Adrienne Asch and Anna s tubblefield, “Growth Attenuation: Good i ntentions, Bad Deci- sion,” American Journal of Bioethics 10, no. 1 (2010): 46–48. 74. Harriet m cBryde Johnson, “The Disability Gulag,” New York Times Magazine, n ovember 23, 2003, http://www.nytimes.com/2003/11/23/magazine/the-disability-gulag.html. 75. Laura Hershey, Just Help , 207–35. see also eileen Boris and r hacel salazar parreñas, eds., Intimate Labors: Cultures, Technologies, and the Politics of Care ( stanford, CA: s tanford university p ress, 2010); and e velyn nakano Glenn, Forced to Care: Coercion and Caregiving in America (C a m – bridge, m A: Harvard u niversity press, 2010). 76. r eed Cooley, “Disabling s pectacles: representations of t rig palin and Cognitive Disability,” Journal of Literary and Cultural Disability Studies 5, no. 3 (2011): 309. 77. For an insightful discussion of “the problem of projection” in determinations of another’s quality of life, and especially of the prominence of “suffering” in such determinations, see Carlson, Faces of Intellectual Disability . 78. m oreover, as s usan Wendell explains, “function” is also determined by one’s cultural and historical context. s usan Wendell, The Rejected Body: Feminist Philosophical Reflections on Disability ( n ew York: r outledge, 1996). 79. Adrienne Asch and Anna s tubblefield, “Growth Attenuation: Good i ntentions, Bad Deci- sion,” American Journal of Bioethics 10, no. 1 (2010): 47. 80. s ara Goering, “ revisiting the r elevance of the s ocial model of Disability,” American Jour – nal of Bioethics 10, no. 1 (2010): 55. For one account of such shifts, see e va Kittay and Jeffrey Kittay, “Whose Convenience? Whose t ruth?” Hastings Center Bioethics Forum, February 28, 2007, ht t p : // www.thehastingscenter.org/Bioethicsforum/ post.aspx?id=350&blogid=140. 81. Anne mcDonald describes herself as a former pillow angel; she spent most of her child – hood in an institution where she was assumed to be fully, and permanently, noncommunicative. Anne m cDonald, “The Other s tory from a ‘pillow Angel,’” Seattle Post-Intelligencer, June 16, 2007, Kafer, Alison. Feminist, Queer, Crip, Indiana University Press, 2013. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/uwinnipeg/detail.action?docID=1189107. Created from uwinnipeg on 2021-01-01 15:49:44. Copyright © 2013. Indiana University Press. All rights reserved. Notes to Pages 64–69 | 197 http://www.seattlepi.com/opinion/319702_noangel17.html. see also Jeremy L. Brunson and mitchell e . Loeb, eds., “ mediated Communication,” special issue of DSQ: Disability Studies Quarterly 31, no. 4 (2011); and nirmala e revelles, “signs of r eason: rivière, Facilitated Communication, and the Crisis of the s ubject,” in Foucault and the Government of Disability , ed. shelley t remain (Ann Arbor: u ni- versity of m ichigan press, 2005): 45–64. 82. Kittay, “Discrimination against Children with Cognitive i mpairments?” 32. 83. Asch and s tubblefield make a similar point, stressing that neither the supporters nor the critics of the t reatment can know for certain how the interventions have affected Ashley or what her experiences of them were. They explain, “Ashley’s parents and doctors decided to proceed with her growth attenuation with good intentions in circumstances of uncertainty about how Ashley experi – ences herself and the world. Our objection to performing growth attenuation procedures on children like Ashley is also based on good intentions in identical circumstances of uncertainty. s o the accept- ability of this intervention cannot be decided based on which side has better intentions or on which side has more certain knowledge of what life is like for Ashley.” Asch and s tubblefield, “Growth Attenuation,” 46–47. 84. Ashley’s p arents, “At summary.” 85. For more on violence against people with disabilities, see, for example, mark sherry, Dis- ability Hate Crimes: Does Anyone r eally Hate Disabled People? (Burlington, Vt: Ashgate, 2010); and Dick s obsey, D. Wells, r . Lucardie, and s. mansell, eds., Violence and Disability: An Annotated Bib – liography (Baltimore, m D: paul H. Brookes p ublishing Company, 1995). 86. i refer here only to the kind of sensations i mentioned above: the binding and release of her seat belts; the feel of her clothes rubbing across her skin; warm bathwater. t o be clear, i am not in any way condoning or encouraging sexual acts with someone unable to consent. u rging for a recognition that Ashley might feel pleasure in her body, through her skin, is significantly different from encour – aging others to take pleasure (or power, or control) in her body. 87. Ashley is not the only child to have had her body medically and surgically altered through interventions that were cast as necessary to her quality of life. Children born intersexed or with “ambiguous” genitalia have faced all kinds of surgical interventions intended to normalize them without regard to their pain, sense of self, or relation to their bodies. Other children have endured limb-lengthening or limb-straightening procedures or have been made to wear braces and splints that often led to chronic pain and no real increase in function. 88. Williams, “Judge n ot?” 9. 89. Anita J. t arzian notes that a similar phenomenon and critique happened with the t erri s chiavo case: disability rights activists, organizations, and scholars treated the case as a disability issue (even as they disagreed about the proper course of action), while critics disputed the relevance of the case to disability rights. Anita J. t arzian, “Disability and slippery slopes,” Hastings Center Report 37, no. 5 (2007): c3. 90. Ashley’s p arents, “At summary.” 91. t arzian, “Disability and s lippery slopes,” c3. Chapter 3 1. A wide range of feminist studies and disability studies scholars have addressed the issue of prenatal testing and selective abortion, analyzing the impact these practices have on women and disabled people and deconstructing the assumptions about gender, pregnancy, and disability that underlie them. For examples of this work, see, among others, Adrienne Asch, “A Disability e quality Critique of r outine testing and e mbryo or Fetus e limination Based on Disabling t raits,” Politi- cal Environments 11 (2007): 43–47, 78; Dena s . Davis, Genetic Dilemmas: Reproductive Technology, Parental Choices, and Children’s Futures (n ew York: r outledge, 2001); Anne Finger, Past Due: A Kafer, Alison. Feminist, Queer, Crip, Indiana University Press, 2013. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/uwinnipeg/detail.action?docID=1189107. Created from uwinnipeg on 2021-01-01 15:49:44. Copyright © 2013. Indiana University Press. All rights reserved.