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Disability and Surgery

A “Surgical Perspective” That Focuses on the Relationship Between Disability and Surgery

Keune, Jason D., MD, MBA, FACS

doi: 10.1097/SLA.0000000000003087
SURGICAL PERSPECTIVES
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SDC

Departments of Surgery and Health Care Ethics, St. Louis University, St. Louis, MO.

Reprints: Jason D. Keune, MD, MBA, FACS, St. Louis University School of Medicine, 3635 Vista Avenue, St. Louis, MO 63110. E-mail: jason.keune@health.slu.edu.

The author reports no conflicts of interest.

Imagine a curb cut: a solid, graded ramp that drops from the top surface of a sidewalk to the surface of the adjoining street. At a slope of not more than 8.33%, allowing travel of 12 cm horizontally to every 1 cm traveled vertically, curb cuts allow those in wheelchairs to travel from curb to street and vice versa without much more effort than that it would take a walking person to do so. Without this environmental innovation, it would be challenging for a person who uses a wheelchair to travel more than one city block. Such an adjustment to the environment of a person who has an impairment can make that impairment less disabling.

The concept of a disabling environment is common in the disability studies literature and has been described by a wide variety of scholars. Rosemarie Garland Thompson, for example, brings about the concept of “misfitting” as a basic way of thinking about people with impairments trying to “fit” into an unaccommodating environment.1 Irving Zola has described the social model of disability with his assertion that…

…the issues facing someone with a disability are not essentially medical ... They are not purely the result of some physical or mental impairment but rather of the fit of such impairments with the social, attitudinal, architectural, medical, economic, and political environment2

Tobin Seibers introduces this “social model of disability” and its alternative, the “medical model” as ways of understanding just exactly what the relationship between the physical impairment and the rest of the world actually is.3

What if the social model of disability is applied to our surgical practice? Does surgery more resemble the era before curb cuts were introduced than the era after? On one hand, surgeons are experts when it comes to disability: we “fix” disabled bodies routinely. On the other hand, we have resisted including detailed knowledge about disability into our curricula and have not considered our surgical environment for its “curbs.”

Consider a patient with cerebral palsy whose arms and legs are fixed hard against the abdominal wall, who presents with acute appendicitis. An operation is indicated, and, as the patient is falling asleep, the surgery attending asks his resident and students, “What will happen when anesthesia is induced? Will this patient's arms and legs relax and straighten?” The attending gets a familiar array of wrong and right answers, resembling the situation when the learners are underprepared because they have not read enough. The reason for the array of wrong answers in this instance is not from a lack of reading however: this knowledge element is not considered a core part of surgical knowledge.

Though there are surgical textbook chapters focusing on pregnant patients, elderly patients, and adolescents, there is no textbook chapter, called “Surgery on the Disabled Patient.” Across the breadth of surgical knowledge, there seems to be a lack of detail regarding common disabilities. Why isn’t there a question on the Certifying Exam, for example, asking one to manage a nonverbal autistic man who becomes agitated and enraged in the middle of the night of postoperative day three after a small bowel resection? There is a gap in the knowledge where there should not be one. In the contemporary era, with what we know about disability, it seems unjust to exclude people with disabilities.

I am interested, so far, in situations in which the person with the physical impairment is seeking surgical care that has little or nothing to do with his disability. It is not only the surgeon's knowledge that is of concern, but the entirety of surgery. In addition to the knowledge that is found in textbooks, I would like to consider the subject matter of certifying examinations and “in-service training” examinations, the built environment in which surgery takes place, the medical equipment that is used, the devices, the entire body of research in surgery and our standard-of-care practice.

The experience of a person with a disability seeking out surgical care can bring out what Aimie Hamraie has called the “normate template.” A “normate” here, refers to a fictional person who is normal in every regard—a collection of all the traits society considers “normal.”4 The “normate template,” then is the master plan on which all future work is based. If this single template is used, it tends to exclude any patient who is not normal—in this case, patients with disabilities. Does surgery have such a normate template? This question has yet to be examined carefully.

There is a related question that remains: Is the urge to cure disability in our practice appropriately gauged? Surgery is central to the “medical model” of disability. Broadly defined, what surgeons do is save lives and “fix” disability. Examples of this sort include the dorsal rhizotomy procedure for cerebral palsy and the placement of cochlear implants. More broadly, a large swath of surgery aims to “normalize” our patients (hernia repairs, gastroesophageal reflux surgery, knee replacements), and patients with disabilities are often included in this same impulse. Disabled patients, though, can sometimes consider the disabling impairment to be a valuable part of identity and can view urges to “cure” all cases as being monolithic, presumptuous, or unable to attend in a precise and responsive way to patient preference.

I hypothesize that opening up surgery in its entirety to give more attention to patients that do not fit the normate template, might have an effect on the urge to cure disability. The drive to surgically “cure” every physical impairment, which is deemed “medicalization,” has incredible potential to be fine-tuned in this way. The surgical care of physical impairments without “medicalizing” disability has a distinct, and legitimate role. The challenge for surgery will be to account for the good and bad in our urge to cure and to incorporate this distinction into practice in a truly patient-centered fashion.

The literature examining surgery as an environment for disability has yet to be created and the method to gaining new knowledge in surgery is empirical. Therefore, to begin to incorporate a more just approach, surgery should pursue a fitting research agenda. Surgery is striving to understand itself as patient-centered and evidence-based. Incorporating disability is one way that surgery might achieve such goals.

Irving Zola has recognized that disability is a universal experience of humanity—everyone has the potential to become disabled.2 The fact that our patients present with profound disabilities is so common in our daily practice. These features make it easy to take the status quo for granted. I have written about this topic in more detail in an article that was published in Disability Studies Quarterly earlier this year.5 Please join me in thinking about the relationship between our surgical practice and disability.

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REFERENCES

1. Garland-Thomson R. Misfits: a feminist materialist disability concept. Hypatia 2011; 26:591–609.
2. Zola IK. Toward the necessary universalizing of a disability policy. Milbank Q 1989; 67 (suppl 2):401–428.
3. Siebers, Tobin. Disability Theory. Ann Arbor, MI: The University of Michigan Press; 2011.
4. Rosemarie Garland Thompson. Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature. New York: Columbia University Press; 1997.
5. Keune JD. Disability and the contemporary surgical gestalt. Disability Stud Quart 2018; 38:
Keywords:

bioethics; disability; justice; surgery

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