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Prospectus

Between the Body and the World: Illuminating the Structures of Experience for Women with Spinal Cord Injury

David Owen, Ph.D. (Chair)

Lauren Freeman, Ph.D.

Brenda Brueggemann, Ph.D.

Darryl Kaelin, M.D.

Overview: Premise, Scope, and Rationale

In this project I will examine the intersections of disability studies and phenomenology in the context of the experience of women with spinal cord injury (SCI). More specifically, I will study the ways in which medical tradition and ablest cultural norms have created an epistemic injustice for this small population. This study will serve to illuminate the ways in which medical biases related to the “paralyzed” body as well as societal biases related to the bodies of women overall, serve to restrict and oppress female SCI patients.

My focus in this work will be on the barriers that exist between women with SCI and the understanding and actions of their health care providers, caregivers, family, partners and employers and the larger community. In order to examine the most specific commonalities of experience, I have excluded the SCI population as a whole, focusing instead on the “micro minority” that is women living with SCI. As these individuals make up only .08 percent of the SCI community, the treatment and research protocols have historically approached people with this injury as having a default male physiology and identity.

As emphasis on the patient experience grows in the health care and hospital industry in the United States, close examination of the barriers, traditions and assumptions that serve to found the epistemic injustice that women with SCI experience in their health care interactions and in their social lives should be at the forefront of that emphasis. In order to examine the experience of women with spinal cord injury, I will employ three major areas of study: disability studies, phenomenology and related and overlapping theories of the body in illness. I will use the first two in order to trace the historical and philosophical constructions of disability, the disabled body, paralysis and value and validity of a person with disability. I will also engage theories of the lived body to demonstrate the ways that a female identity and physiology further complicate treatment and thus the experience of women with spinal cord injury.

In five chapters addressing issues of disability, female social identity, structures of experience in health care and marginalization of non-normative bodies, I will argue that institutional biases regarding women with SCI can be broken down by developing tools that alter traditional interactions in health care. These tools must be structured in direct relationship to the structures that undergird the biases that are in place. Any effort to understand, facilitate, accommodate or alter the patient experience will require action related to the specific needs of the populations in question. Generic solutions and standardized surveys and approaches will not address the individual’s actual experience. I will work to develop a phenomenological instrument based on Havi Carel’s existing theory for facilitating the communication of the patient subject’s experience.

Rationale

The experience of a person with illness has been approached via medicine, medical humanities, disability studies, literature, philosophy and the social sciences. For all of the investigation into this topic from these disciplines, there is a relatively small body of literature. In order to examine the experience of a woman with SCI, a complex multidisciplinary approach is required. Much of the extant scholarship relates to medical management of or “cure” for conditions, the rights of patients or accessibility of care. Scholars have yet to delve into the impact on identity that treatment protocols, social attitudes, media representations and health care power differentials have for the woman living with paralysis from SCI.

One element that is missing from the literature is a tool that permits engagement by the patient, the physician, the health care team and the caregiver in a conversation about the experience of SCI from a woman’s perspective. Without such an instrument, it is difficult to prioritize the patient perspective. In order to move the patient’s goals, sensations and desires to the front of health care interactions, all parties must be able to refer to a common understanding of them. If female SCI patients were able to make their experience thoroughly understood through a consistent mechanism as part of the health care situation, physicians, therapists and nurses would be able to include the patient’s own priorities for their care and functional recovery more prominently in their treatment planning and encounters. Such a mechanism would facilitate sometimes difficult conversations between patients and caregivers, to better align their expectations of daily support, short-term and long-term goals. In this dissertation, I will seek to co-create a prototype of such a tool through efforts with women with SCI, their physicians, therapists, nurses and caregivers.

Extant Research on this Topic

Disability Studies has developed rapidly along interdisciplinary lines since the field emerged in the 1980s, with the first academic program established at Syracuse in 1994. Donna Haraway’s 1985 book “A Cyborg Manifesto” paved the way for a markedly different way of looking at the body–as both constructed and unstable. Haraway celebrated the modern body as beyond “natural” and the better for it. (Haraway 2006)

The Americans with Disabilities Act (ADA) was signed into law by President George H. W. Bush on July 26, 1990. This landmark law helped to raise awareness of the largest minority population in the U.S., those who fall into the socially constructed category “disabled.” This law advanced the Rehabilitation Act of 1973 and expanded it to mandate that reasonable accommodations must be made so that people with disabilities are afforded the same access as the general public in all areas of public life, not only in federal institutions.

Shortly after, the first edition of the “Disability Studies Reader” was published, with editor Lennard Davis writing “. . . the ”problem“ is not the person with disabilities; the problem is the way that normalcy is constructed to create the ”problem“ of the disabled person.” (The Disability Studie...) The “Reader” was completely groundbreaking; delivering an interdisciplinary chorus of academic voices from fields as disparate as post-colonial studies, feminist studies and other specialties on culture and identity to bear on “disabled” and “non-disabled” bodies. Early prominent voices include Simi Linton, Laura Hershey and Tom Shakespeare.

In recent years, Disability Studies has expanded into intersectionality, with inquiry into the overlapping topics of disability, ethnicity, race, gender, and sexuality. Scholars include Christopher Bell, Robert McRuer, Rosemarie Garland-Thomson, Fiona Kumari Campbell and Alison Kafer.

Critical Interventions

In 2008, my closest friend, Jane, a longtime teacher and librarian, went outdoors during a terrible windstorm and was struck to the ground by a falling tree limb. The weight of the limb snapped her spinal cord and a protruding branch pierced her skull—she suffered a simultaneous spinal cord injury and traumatic brain injury. Recovery from neural injuries is long and slow—although she may never recover the function she had before the accident, my friend continues to progress years later. It was in witnessing her treatment, adaptation and recovery that I began to learn what it means to be a woman with a spinal cord injury. The medical aspects of the injury, the rehabilitation and therapy, the dramatic changes in relationships and identity were significant. What I noticed most markedly, though, was the struggle against attitudes and misunderstandings, as Jane disagreed with the limitations and expectations she encountered as a woman in a wheelchair.

With her accident, Jane joined a micro-minority in the population. A group that is too small in number to be considered even a minority. Spinal cord injury or SCI, an injury that affects predominantly men, affects women at a ratio of less than one in five.

The special circumstances surrounding women with SCI make their experiences a prime starting point for examining the situation of women with disabilities, their perspectives, their status in the mainstream culture, issues of identity and access and their experience of being in the world.

Neural injury begins with an initial insult, triggering a cascade of damage from the site of the insult through the nervous system as a whole. The secondary aspects of the injury, as the cell damage progresses through the system like cracks through a frozen lake, are more devastating than the first traumatic blow, as nerve cells are marked for inevitable death in a process that is difficult to arrest. The wound is merely the tip of the iceberg, signaling a far greater injury beneath. Mimicking the path of physical injury is the injury to the social being, which is ruptured in its connectedness as the spinal cord is ruptured from its neural connections.

The body has long, perhaps always complicated the study of women. Women’s status in their cultures is imagined, determined and dictated by difficult to govern formulae of performance, perception, biology, mythology and anatomy. The category of “disability” further complicates this continuum of identity. We see ample evidence of this complication in U.S. visual culture. Women visibly living with any disability are rarely shown in advertising, television, magazines or films.

As women are such a small minority of people living with SCI, the majority of the medical research and medical discourse related to this condition focuses on men. This reality, combined with the relative lack of visible representatives or even representations of this community in the mainstream culture, results in social invisibility for women with SCI. A fact sheet currently available online informs readers that “the effect of SCI on female sexuality is far less devastating than on males,” and also that “the physiological sexual responses for women are mostly internal and less conspicuous than in males and, therefore, more difficult to study.” Further, the same document discounts female patients’ accounts about changes in their own sexuality after injury: “Most of the information that has been reported is subjective (i.e., obtained by history from patients rather than from scientific observation) and is, thus, likely to be less accurate” (CITE). This last statement effectively closes off the entire topic of women’s sexuality in SCI, as the physical responses are too difficult to study and subjective accounts are not “scientific .”

In order to understand the barriers to recognition for women with spinal cord injuries, it is beneficial to look to phenomenology theories of the body. Merleau-Ponty theorizes that structures of perception as they relate to the body are shaped by the