Language Incompetence

Learning to Communicate through Cancer, Disability, and Anomalous Embodiment

Suresh Canagarajah

• Publisher: Routledge
• Year: 2022
• Print ISBN: 9781032079189
• eBook ISBN: 9781000548549
• Topic: Languages & Linguistics
• Subtopic: Communication Studies
• Index: Languages & Linguistics

This book is framed as a memoir of the author's journey through a cancer diagnosis and resulting impairments, as he continued his teaching and research activities during and after medical procedures. The narrative weaves together theoretical debates, textual analyses, and ethnographic data from communicative practices to redefine language competence.

The book demonstrates:

• the generative and resistant value of human vulnerability
• the importance of vulnerability in motivating engagement with social networks and material ecologies for productive thinking, communication, and community
• the role of relational ethics in social and communicative life
• a decolonizing orientation to disability studies and language competence.

While language competence was traditionally defined as mentally internalized grammatical knowledge for individual mastery of communication, this book demonstrates the need for distributed, ethical, and embodied practice.

The book is intended for graduate students and researchers in language and literacy studies. It would interest scholars outside these disciplines to understand what language studies can offer to address the role of disabilities, impairments, and debilities in embodied communication and thinking. In the context of the global pandemic, compounded by environmental catastrophes and structural injustices which disproportionately affect marginalized communities, the book helps readers treat human vulnerability as the starting point for ethical social relations, strategic communication, and transformative education.

1 Am I Disabled?

DOI: 10.4324/9781003212065-1

It was shaping up to be one of those pleasant summers in Happy Valley. We had just finished classes for the 2014 spring semester. With university closed and students gone, the environment was becoming quieter, greener, even lyrical. I was taking long cycle rides around our leafy trails, along the familiar White Pine and Canadian Hemlock, surrounded by the music of the Blue Jay and Warbler. Then I thought of consulting my doctor on a minor pain I experienced occasionally on the lower right abdomen. The doctor said that the CT scan showed “acute appendicitis” and I should go directly to the Emergency Room for a surgery. I dragged my feet as the pain was not intolerable. I was mowing the lawn and lifting weights in the university gym without any discomfort. Besides, I always keep away from medical procedures because I am wary of the commercialized healthcare industry in the US. I worry that physicians would prescribe drugs and procedures to make money out of me. So I went through the ludicrous exercise of getting a second and a third medical opinion on whether I should have my appendix removed. After many weeks, I met a friendly colorectal surgeon in the teaching hospital affiliated to our university at Hershey. He said he’d do a quick laparoscopic surgery which would allow me to return home the next day and fly the following week to Jyvaskula, Finland, to speak in the Sociolinguistic Symposium.

I started the two-hour drive to Hershey, telling my family that I’ll be back the next evening. After removing my appendix, the doctor told me to stay overnight and prove that I can “do the three Ps” so that he could release me the following day. He glossed the three Ps as “passing gas, peeing, and pooping.” When he came on his rounds the next evening, I was getting dressed to leave. I recounted all my accomplishments in the bathroom. But he wasn’t amused. He gestured to me to pause, and said: “I sent your appendix to Pathology. It usually takes five days for an official report. But in your case, they called me within 24 hours. There was a cancerous tumor inside your appendix.” He then took a marker and wrote down the names of three forms of appendiceal cancer on a white board on the right wall of my room. He mentioned that mine was a very virulent form with a low survival rate.

I wasn’t focusing on the doctor’s Latinate terms relating to my cancer or his exposition of an aggressive treatment plan. I turned my face left towards the window through which I could see the sun setting over the undulating hills of rural Pennsylvania on a beautiful June evening. My life flashed before me: childhood and education in rural Sri Lanka; caring for my mother with bouts of depression; dodging bullets and bombs in backyard bunkers during the civil war; being evacuated by a boat run by the International Commission of Red Cross (ICRC) with my wife and two infant daughters; arriving in New York City with the generous quota of a single bag per family member, as stipulated by ICRC; and slowly starting life again in an intimidating megapolis. I muttered to myself: “It was a good run. Thank you, God. I’m ready to go.”

Figure 1.1Medical procedure

Author in hospital gown after cancer surgery, connected to monitors and intravenous tubes.

These thoughts were disrupted when the word “disability” grated on my ear. The surgeon was saying, “Go on an extended disability leave. Bring me the FMLA forms. I’ll sign them for you. Tell your department chair that you won’t be teaching in fall. Cancel all your trips. We have to start your treatment quickly. The cancer may have already spread to your lungs and brain.” That’s the first time anyone had used the word “disability” in reference to me. Soon, as the treatment proceeded, my body became more impaired. A month later, on 16 July, my wedding anniversary, I underwent an eight-hour surgery. A team of oncologists performed a hemicolectomy to remove the right side colon. Finding a lymph node positive, they removed 18 inches of my small intestines. They debulked my peritoneum and washed it with a heated infusion of chemotherapy drug for more than an hour (in a procedure known as hyperthermic intraperitoneal chemotherapy, or HIPEC). I woke up to a diagnosis of stage-3 cancer and a prescription of 12 cycles of chemotherapy injection. Because of the chemotherapy, I developed neuropathy in my hands and feet. Perhaps also compounded by a spinal stenosis, I developed difficulties in walking, climbing, and maintaining balance. The surgical adhesions caused bowel obstruction, which sent me to the hospital four more times for additional surgical procedures.

These physical changes led to identity shifts. After the first major surgery, I seemed to gradually lose my personhood. Unable to stand on my feet because of the stitches and the fatigue, I thought that the nurses were being condescending to me when they helped me around to bathrooms and came around for tests. As I lay in a daze on Oxycodone, nurses inserted needles to draw blood, thrust thermostats, and pressured my arm for my vitals in mechanical frequency. They hurriedly filled the chart with my blood pressure, oxygen level, and blood counts before they rushed off to the next patient. I didn’t succeed in initiating a conversation with them. It seemed to me that I became the numbers, codes, and graphs represented in my chart. This new identity ascription continued after I left the hospital, as I did periodic CT scans, PET scans, and MRIs to check for metastases. When I followed the chemotherapy regimen, I had to frequently measure the fluctuating blood count, and oncologists started referring to me in numbers. “You are 11.9. That’s not bad. I send only 12.5 for a shot of Pegfilgrastim.”

Medical, employment, and government institutions defined my identity as a liability. I had to go through so many institutional channels preordained for my diagnosis that I didn’t have full control over my life. I was told that the “standard procedure” after a diagnosis of appendiceal cancer was hemicolectomy, debulking, and HIPEC. Although I had extensive conversations with my oncologists and insisted that I didn’t want those procedures conducted if they didn’t detect the spread of cancer elsewhere, I had to sign a release allowing them to perform anything they saw fit during their intra-operative pathology. Eventually, even though they didn’t see any metastasis in the peritoneum, they performed the highly invasive debulking and HIPEC procedure, citing their expert judgment. Many times, when I went to the Emergency Room (ER) for bowel obstruction, an administrative assistant rolled in her workstation to get my social security and credit card numbers for payment even before the doctor saw me. My family was concerned about providing my personal information for these databases and on FMLA (Family and Medical Leave Act) forms. They feared that health insurance plans would decline coverage in the future (citing pre-existing conditions); or that my children would be treated as prone to cancer and discriminated against when checked for family medical history in various institutions; or that I would be discriminated against if employers considered me unproductive or dispensable because of my health condition. These concerns were anxiety-generating for all of us. When we should have been focusing on my health, we were preoccupied with the procedures of medical, professional, and government institutions. In the eyes of these institutions, I was a problem that needed to be tracked; a deviance that needed to be disciplined; or a costly liability that needed to be managed. And yes, if they were strategic, I was also a resource that could be marketized for expensive therapeutics, medical research, pharmaceuticals, and prosthetics.

Soon, the words and attitudes towards my new physical condition even among well-meaning friends and relatives felt condescending to me. Some graduate students, who visited to console me, adopted a protective attitude. A beloved Chinese student visited me with five different types of beans and a special food processor, and told my wife that she should make me a porridge every morning from the recipes she left behind. She advised me that I should cut down on eating candy, as sugar caused cancer. A Turkish postgraduate scholar advised me that I was working too hard and not sleeping enough, which affected my immune system. She asked me if my family members had cancer; when I said no, she nodded her head with conviction and declared “stress!” Some of my neighbors said it was not my fault but simply genetics, as someone in my clan probably had cancer. My response to all their diagnoses was a resounding “No”: I hate candy; none in my family had cancer; and I sleep peacefully like a baby.

However, since I received such well-meaning advice from acquaintances, I became anxious, lost sleep, and asked myself what I had done to deserve this disease. I started doing Internet research on my symptoms and diagnosis to figure out what might have gone wrong. Soon, some people discovered my digital footprints and sent me a barrage of unsolicited emails to offer additional help. The first set related to making a comparison of cremation and burial costs to find which package suited me best. The subject header said: “Burial vs. Cremation: Learn More.” They also offered a menu of funeral homes, cremation services, and burial sites to choose from. The second set of unsolicited emails was for burial insurance. The subject header screamed in all caps, “PROTECT YOUR LOVED ONES IF YOU PASS AWAY… . TAKE A LOOK AT BURIAL INSURANCE.” To this day, I receive a dozen messages of this sort each time I open my inbox. They suggest to me that my diagnosis means that I am as good as dead for some commercial agencies. They are probably starting to wonder why I am taking so long.

Prompted by these messages to plan my funeral, I thought of writing a letter to my relatives announcing my diagnosis. I started with my response when the colorectal surgeon broke the news in the hospital, as narrated earlier. I conveyed to them that though the surgeons considered the prognosis grim, I was going to focus on work and family responsibilities, treating disease and death as part of life, not antithetical to it. However, the letter that I thought was courageous in demonstrating that I wasn’t afraid of death, sounded cowardly to some of my relatives. They said that I seemed scared and defeated. Some wrote back to me and said that I should fight cancer and survive it at all costs. They sensed that I had given up the fight too quickly by resolving to accept death. They said they were praying that I should win this battle, like the other challenges I had overcome in the past. This metaphor of battle has been in American public discourse since the “war on cancer” slogan by President Nixon in the 1970s. However, the metaphor filled me with dread. If I die, would my relatives say that I didn’t fight hard enough or that God had abandoned me? While some blamed me for causing the disease, might others blame me for succumbing to it? I wouldn’t come out of these judgments looking good either way, I thought to myself.

In retrospect, it appears that what I was experiencing in those early days of my diagnosis were different ways to look at disability. To begin with, I was initially torn between the medical and social models as theorized in disability studies (DS hereafter; for a balanced review of both models, see Hirschmann & Smith, 2016). The medical model, as represented in the discourses of health professionals and some of my acquaintances, made it appear that my condition resulted from an individual biological abnormality. I was unlucky or negligent as to fall ill. There were recommended medical procedures predesigned for bodily ailments of this nature. I had little control over how medical professionals handled my situation according to their expertise. What was treated as a biological deficit required expert knowledge and interventions to be rectified. There was thus a clear diagnosis and solution defined by scientific expertise on the human body. As medical professionals focused on my body, I also became depersonalized, treated as a number, chart, or symptom. The condescension of professionals, acquaintances, and relatives seemed warranted because they perceived that the disease made me deficient, abnormal, and dependent. In this way, the medical model defined my newly evolving identity as a deficient human condition stemming from disease or quirks of nature.

What I gradually sensed, however, was that my bodily impairment didn’t necessarily make me deficient in my life and work. The deficit identity derived from unfair, irrelevant, and prejudicial discourses surrounding my diagnosis and people’s treatment. My status as disabled was socially constructed. There were long-standing social discourses that informed the attitudes of my acquaintances, relatives, and physicians. Their conversations reflected biases relating to fundamental definitions on what it means to be able, normal, and human. I was skeptical about some of the attributions and interpretations of my acquaintances, as perhaps evident in my wry narration earlier in this chapter. I began to talk back to my friends and acquaintances to resist their ascriptions and attributions of my condition. I realized that disability was a biased social identity ascription, as scholars in the social model of DS articulated (see Goodley, 2010, for definition). My realization of social biases against disability developed a critical stance and a measure of personal dignity, at least within myself, when those around me reduced my status with their treatment and talk. The social model thus helped reposition myself against these biased discourses and adopt a resistant footing. Among the many tentative strategies I adopted was to present myself as “differently abled”—that is, endowed with certain new strengths and resources that accompanied my biological changes to facilitate my functionality. I saw the disabled as enjoying a different (not deficient) identity, which unfortunately was discriminated against like other marginalized identities in society.

I call “differently abled” a “tentative strategy” because my journey through cancer and DS helped me constantly problematize my stances and reposition myself. I gradually entered into an exploration on what it means to be able, competent, or functional, when the medical model and its discourses doubted my capacity to function or even to live. This book narrates how I wrestled with the dominant discourses of cancer and disability to embrace my biological changes and continued to lead a productive life of thinking, writing, and teaching. My embodied thinking and reading as I journeyed through my medical condition led to additional DS orientations, which better informed my personal and professional journey. My relationship with DS was dialectical. While theory empowered me for practice, my multiple identities and messy social entanglements motivated me to push back against some theories for alternate stances. DS is itself a complex field with internal debates, inconsistencies, and overlaps. Therefore, the models I describe are selective, based on how I appropriated them for my understanding and practice (see Goodley, 2010, for a comprehensive review of DS models).

Another tentative strategy I adopted in my fumbling initial efforts to find my footing under my altered life condition was to adjust my environment to suit my impaired body and mind. I will narrate in the next section how this strategy was useful to start undertaking some academic responsibilities from the hospital. I saw that certain social and environmental arrangements favored the non-disabled, and I could recover my ability if I changed things around to suit me. In retrospect, this strategy resembles the theorization of other variants of the social model in DS. For example, the British social model addresses socioeconomic structural inequalities that marginalize the disabled, and the Nordic model adopts an environmental orientation in addressing the gap between the disabled body and an environment that favors the able bodied (see Goodley, 2010). These models differ from the American strand, which is also labeled a discoursal or cultural model, and informed by American identity politics. The British and Nordic models adopt a more material orientation in considering inequalities and environmental accommodations that can facilitate the productivity of the disabled. These social models posit that when all of us have biological differences and limitations, the dominant institutions and ideologies define certain forms of limitations or impairment as “disability” and treat such people as abnormal. Certain other people’s limitations are not defined as disability. This ideological bias then shapes society and the environment to suit the conditions of those who are defined able. For these DS models, then, disability is not in the pers...

Table of contents

• Cover
• Half-Title Page
• Title Page
• Copyright Page
• Dedication
• Table of Contents
• List of Figures
• List of Tables
• Preface
• 1 Am I Disabled?
• 2 Learning to be Able
• 3 BC/AC: Changing Identities and Communities
• 4 Designer Babies and Chosen Tribes: Towards a Relational Politics
• 5 From War Zones to Cancer Wards: A Community of Dependent Frail Bodies
• 6 Composing at Chemo Time: Cancer Journals as Performative Writing
• 7 John’s Final Blogs: Anomalous Embodiment and Religious Disability Rhetoric
• 8 The Arbor and the Rhizome: Rethinking Language Competence
• 9 Weaving Texts: Scientific Communication as Anomalous Embodiment
• 10 “Supplement or Compensate our Weak Points”: Relational Ethics in Academic Interactions
• 11 Café Conversations: Embracing Vulnerability in Society and Education
• Appendix First draft of Jihun’s Second Publication
• References
• Index