Reconsidering Intellectual Disability

L'Arche, Medical Ethics, and Christian Friendship

Jason Reimer Greig

• Publisher: Georgetown University Press
• Year: 2015
• Print ISBN: 9781626162433, 9781626162426
• eBook ISBN: 9781626162440
• Topic: Theology & Religion
• Subtopic: Ethics in Medicine

Drawing on the controversial case of “Ashley X,” a girl with severe developmental disabilities who received interventionist medical treatment to limit her growth and keep her body forever small—a procedure now known as the “Ashley Treatment”—Reconsidering Intellectual Disability explores important questions at the intersection of disability theory, Christian moral theology, and bioethics.

What are the biomedical boundaries of acceptable treatment for those not able to give informed consent? Who gets to decide when a patient cannot communicate their desires and needs? Should we accept the dominance of a form of medicine that identifies those with intellectual impairments as pathological objects in need of the normalizing bodily manipulations of technological medicine?

In a critical exploration of contemporary disability theory, Jason Reimer Greig contends that L'Arche, a federation of faith communities made up of people with and without intellectual disabilities, provides an alternative response to the predominant bioethical worldview that sees disability as a problem to be solved. Reconsidering Intellectual Disability shows how a focus on Christian theological tradition’s moral thinking and practice of friendship with God offers a way to free not only people with intellectual disabilities but all people from the objectifying gaze of modern medicine. L'Arche draws inspiration from Jesus's solidarity with the "least of these" and a commitment to Christian friendship that sees people with profound cognitive disabilities not as anomalous objects of pity but as fellow friends of God. This vital act of social recognition opens the way to understanding the disabled not as objects to be fixed but as teachers whose lives can transform others and open a new way of being human.

1

A NEW APPROACH TO AN OLD DILEMMA

The Ashley Treatment and Its Respondents

In the bigger picture, I believe the opposition to the Ashley Treatment has taken our society a step backward in what has been a positive attempt in recent years by the medical community to allow parents to make some of the difficult decisions regarding their children’s care. Personalized medical care should allow individual families to make informed decisions within the medical and moral boundaries that are found in the hospitals they frequent.

—Sandy Walker, the parent of a child with a profound intellectual disability, “In Support of the ‘Ashley Treatment’: A Parent’s View”

The Seattle Growth Attenuation and Ethics Working Group settled on the compromise that growth attenuation should be limited to severely cognitively disabled and nonambulatory children…. The real supposition underlying the restriction is that severely cognitively disabled people will never know the difference—even though we cannot be sure this is true…. Yet we have learned that once we stop supposing that they don’t know the difference anyway, we learn how often they understood the treatment as mistreatment.

—Eva Feder Kittay, the parent of a child with a profound intellectual disability, “Discrimination against Children with Cognitive Impairments?”

Although Ashley’s parents may have felt that their allowing the various procedures she received was an “easy decision,” the plethora of responses for and against the Ashley Treatment (AT) point to the fact that many others do not agree. Responses and analyses have come from the mainstream media, bioethicists, disability advocates, legal theorists, medical professionals, and parents of children with disabilities. The variety of people who have been involved in discussing the Ashley case reveal its relevance across disciplines and social worlds, and the sometimes strong reactions it has engendered show how much is at stake for many people.

This chapter attempts to lay out some of the details of the AT and to analyze the various responses from different actors and stakeholders. It begins with a description of Ashley’s particular embodiment. Then an examination of the motivations of Ashley’s parents and her primary medical professionals and ethical advisers lays the foundation for why they chose to implement these interventions for Ashley. Following this, I discuss the various responses to the AT, which are divided into those supporting the AT and those rejecting it. It concludes with a discussion of some of the main themes of the respondents, and where the discussion might continue.

In considering the various responses, one can see a pattern forming about the AT’s acceptability. Ashley’s parents clearly understand the AT as enhancing her quality of life by eliminating potential suffering and increasing her prospects for social participation. Other voices in favor of the interventions come almost exclusively from bioethicists, many of whom work quite closely with medical professionals. Proponents of the AT agree with Ashley’s parents in claiming that these measures will improve her quality of life and in insisting that the interventions serve all people’s best interests. In addition, they believe that the violation of human dignity is not a problem due to Ashley’s particular embodiment. For supporters of the AT, acting without Ashley’s consent represents not disability discrimination but disinterested care determined by those who know Ashley best. By contrast, those opposed to the interventions come from more diverse backgrounds—philosophy, law, disability advocacy, theology, and bioethics—and to a large degree have experience of people with disabilities, either through first-hand relationships or disability studies theory. According to these voices, the AT is a medical fix for a social ill and ignores the moral harm to the larger community that comes from violating Ashley’s rights and bodily integrity and thus denying basic moral intuitions. This moral harm not only concerns Ashley and her caregivers but also has broader social implications. Proceeding with the AT sets a potentially dangerous precedent for further invasive procedures, and illustrates the objectification and instrumentalizing of the body that is prevalent in Western society.

Ashley X

This analysis of the AT appropriately begins with the perspective of Ashley and her parents. The discussion starts with a description of Ashley’s embodiment, not only because it communicates Ashley to the world but also because its limitations originally inspired the AT. After a description of the various procedures making up the AT, this section outlines Ashley’s parents’ motivations in opting for the medical therapies involved. Her parents articulate a genuine love for Ashley and care for her quality of life; and to them, the technological modifications of the AT appear as the best solution to an intractable problem.

Ashley’s Embodiment

Although Ashley’s birth was uneventful, within a month it appeared that her mental and physical development was not proceeding normally. She displayed symptoms of hypotonia (low muscle tone), feeding difficulties, choreoathetosis (involuntary bodily movements), and developmental delay.¹ After several years of evaluation, she was diagnosed with “static encephalopathy of unknown etiology with marked global developmental deficits.” Her medical specialists agreed that there would be no significant improvement in her cognitive development or ability, which they thought would thus continually remain that of a three-month-old.

As a result, Ashley’s parents describe her at nine years of age as not being able to “keep her head up, roll or change her sleeping position, hold a toy, or sit up by herself, let alone walk or talk.”² (All the quotations from Ashley’s parents are from their blog, as explained in the notes.) Due to her inability to swallow, she receives all nutrition through a gastronomy tube. And due to her total dependence on others and lack of mobility, her parents have nicknamed her their “Pillow Angel” because “she is so sweet and stays right where we place her—usually on a pillow.”³ Her lack of cognitive development means that she “has all of a baby’s needs,” which include being physically close to, engaged with, and entertained by family members.

Ashley’s parents describe her as a lover of music, to which she sometimes vocalizes or moves her body, and as being alert and aware of her surroundings. Although she sometimes appears to notice people and voices around her, she rarely makes eye contact, and her parents often do not know if she recognizes them. Aside from her “abnormal mental development,” she is healthy and in a “stable condition.” She attends school, in a separate classroom for children with disabilities, where she goes on outings and receives a high level of attention from her teachers and therapists.

To her parents and two younger siblings, Ashley is clearly “a blessing and not a burden.” She acts as a “bonding factor” within the family, and everyone appreciates and values her presence. As her parents express it, “We constantly feel the desire to visit her room (her favorite place with special lights and colorful displays) or have her with us wanting to be in her aura of positive energy. We’re often gathered around her holding her hand, thus sensing a powerful connection with her pure, innocent and angelic spirit…. She inspires abundant love in our hearts.”⁴ Her parents believe that the main value of her life is to be a part of their family, and thus they feel strongly that keeping her at home most fully facilitates her flourishing.

The Ashley Treatment

In early 2004, when Ashley was six years old, her parents noticed signs of early puberty. The possibilities of her continued growth alarmed her parents because they already felt at their limit in being able to physically care for her and keep her at home.⁵ Her parents did not consider the possibility of turning her care “over to strangers.”⁶ They were also concerned about an increased risk of pressure sores and the possibility of her decreasing involvement in social events due to her being more difficult to transport. In addition, her parents worried about the pain of menstrual cramps, along with potential discomfort from full breast growth. A history of large breasts ran in the family, and additional growth would potentially make it more difficult for her to fit comfortably in her wheelchair.

Ashley’s parents brought these concerns to her pediatricians, who then referred them to the pediatric endocrinologist Dr. Daniel F. Gunther at the Seattle Children’s Hospital. After extensive discussions between her parents and physicians, a plan was created to attenuate her growth through a treatment regimen of high doses of estrogen. Estrogen treatment therapy had been safely used in the 1960s and 1970s on teenage girls to prevent them from growing too tall, a prospect some parents at the time considered potentially stigmatizing.⁷ In addition, a hysterectomy would be performed, addressing the parents’ concerns about menstrual complications, along with fears of her ever getting pregnant. Included with this would be a removal of the breast buds, thus precluding the possibility of an adult breast size. Her parents subsequently referred to this combination of procedures as the “Ashley Treatment.”

As individual interventions, estrogen therapy, hysterectomy, and breast bud removal had all been performed safely and without controversy. Yet the unprecedented nature of the three being done together led the doctors to refer the case to the hospital’s ethics committee. The committee met with the parents, the patient, and the medical professionals involved, regarding the parent’s motivations along with the potential benefits and harm for Ashley. After a lengthy discussion, the committee came to a consensus that the procedures making up the AT were ethically appropriate in this particular case. However, any future requests for the AT for other patients would be considered only on a case-by-case basis, with review by an independent body.⁸

Following an uncomplicated surgery where the hysterectomy and breast bud removal were performed, the estrogen treatments were applied for two and a half years using a skin patch applied every three days. No medical complications ensued from the treatments, and Ashley reached her final height of 4 feet 6 inches and a weight of 65 pounds in 2010.⁹ By March 2012, Ashley’s father noted that her height had remained constant, while her weight had increased slightly, to 75 pounds.¹⁰

The Parents’ Motivations

For Ashley’s parents, the motivation for proceeding with the AT clearly clustered around maximizing Ashley’s quality of life, for the biggest challenges she faces “are discomfort and boredom.” According to her parents, trivial things like a sneeze or a hair landing on her face bother her, let alone more significant problems like severe bed sores or a constricting bra: “Ashley will be a lot more physically comfortable free of menstrual cramps, free of the discomfort associated with large and fully developed breasts, and with a smaller, lighter body that is better suited to constant lying down and is easier to move around…. Ashley’s smaller and lighter size makes it more possible to include her in the typical family life and activities that provide her with needed comfort, closeness, security and love: meal time, care trips, touch, snuggles, etc.”¹¹ Contrary to what they see as a fundamental misconception, Ashley’s parents adamantly deny that the AT was primarily for their convenience as caregivers. Rather, for them Ashley’s best interests trump all other considerations. Improving her quality of life and physical comfort were at the center of the parents’ motivations for going ahead with the procedures.

The parents also believed that Ashley’s dignity would be improved by having a smaller body that better suits her cognitive development: “Given Ashley’s mental age, a nine and a half year old body is more appropriate and provides her more dignity and integrity than a fully grown female body…. If people have concerns about Ashley’s dignity, she will retain more dignity in a body that is healthier, more of a comfort to her, and more suited to her state of development.”¹² Although many claim that the parents have violated Ashley’s dignity, they counter that they, in fact, care a great deal about her dignity because of the increased quality of life that the AT has provided.

Because Ashley will never ...

Table of contents

• Cover Page
• Title Page
• Copyright Page
• Dedication
• Contents
• Introduction
• 1 A New Approach to an Old Dilemma: The Ashley Treatment and Its Respondents
• 2 Exposing the Power of Medicine through a Christian Body Politics
• 3 Disability, Society, and Theology: The Benefits and Limitations of the Social Model of Disability
• 4 No Longer Slaves but Friends: Social Recognition and the Power of Friendship
• 5 The Church as a Community of Friends: Embodying the Strange Politics of the Kingdom
• 6 Beholding the Politics of the Impossible: L’Arche as an Embodiment of the Church as a Community of Friends
• Conclusion
• Bibliography
• Index
• About the Author