International Perspectives on Teaching with Disability

Overcoming Obstacles and Enriching Lives

Michael Jeffress, Michael S. Jeffress

• Publisher: Routledge
• Year: 2018
• ISBN:
  9781351584616
• Edition: 1
• Topic: Sozialwissenschaften
• Subtopic: Behinderungen in der Soziologie

Efforts to reduce discrimination and increase diversity on campuses, coupled with shrinking budgets causing administrators to devote more resources toward recruiting and retaining students with disabilities, are fuelling an explosion of research in the area of inclusive education. An important focus that has been largely neglected is the place of teachers with disabilities in academe. International Perspectives on Teaching with Disability brings together 25 multi-disciplinary scholars with disabilities from Africa, Canada, the Caribbean, the UK, Israel and the United States to share their struggles and successes in teaching with disability.

The 18 chapters are written largely from autoethnographic perspectives grounded in solid academic research but full of anecdotes and self-reflexive narratives that provide insights into the lived experiences of the authors. Woven into the narratives are discussions of the complexities of self-disclosure and self-advocacy; the varied—and often problematic—ways disability is experienced, perceived and discussed in society and in the classroom; the challenges of navigating academe with disability, the value of disability pedagogy, the positive student outcomes achieved by teaching through disability, as well as practical applications and lessons learned that will benefit educators, administrators and students preparing to become teachers.

This book is written to champion the integral place and role of disabled educators in academe. Current educators with disability will be affirmed. Those with disability aspiring to become teachers will be encouraged. Temporarily able-bodied administrators and educators will be challenged. Everyone will be informed. This book will be a welcome addition to reading lists in a wide array of academic fields including: Education, Pedagogy, Disability Studies, Human Resources Management, and Sociology.

Section III

Teaching with Hidden Disability

10 To Share or Not to Share? Pedagogical Dilemmas of a Chronically-Ill Lecturer in Teaching with Invisible Disability

Adi Finkelstein

10.1 Healthy with an illness

About 30 years ago, when I was in my early twenties, I was diagnosed with ulcerative colitis (UC). For about 11 years, my illness was what Williams (2000) describes as a “normal illness.” It was already part of my daily life and biography. Then the symptoms of my illness worsened, and I had to go through colectomy. This was a turning point in my life. The worsening of my physical condition and the months in the hospital, followed by the “dead end” of my colon’s removal, were experiences that shook me and served as a reminder of the fragility and vulnerability of my body and my life.

In the aftermath of my colectomy, I was far from cured. I had to learn to live with and navigate my disability. My body largely dictates the pace of my daily life. I navigate the quantities, the texture, and the timing of everything that I eat and drink to be sure that I am always near a toilet. This strict regime is not easy to handle in daily life, and especially not in academic life, which is very intensive, subjected to strict timetables and does not allow for “good days bad days” (Charmaz, 1991), pain, and fatigue.

The bleeding, severe pain and swelling in the lower abdomen, the gas, and the nausea all through the day and night are all a part of daily life for people with UC. These symptoms are described by Moore (2013) as “The Beast within.” Anyone with UC can relate to these words from Moore:

“Arrrrhhhhhhhhhh... for fuck’s sake!” I pull myself off the sofa and head toward what has now become my second home. Urgency. Pain. Emptying. Pain. More emptying. Waiting. No pain. After The Beast is satisfied I appear from the toilet; I see a figure stooped in front of the mirror. It’s drained of color, bags run deep under its eyes, a face with no laughter, its whole body is limp, the stuffing knocked out of it.

(p. 205)

Although it has been about 20 years since I had surgeries and thus 20 years since I had active UC, I still remember how it felt when “the beast” raged in me.

The operations did indeed “free” me from my diseased colon and the suffering inflicted by my illness, because I hardly have any symptoms of UC. I am, nevertheless, still disabled because I have no colon. I live in two parallel worlds: the “real world” where I function as best as I can, and the “other world” where I am always attending to my swelling stomach. This experience of being divided in two is always with me. I feel it when I teach, when I meet with my students and colleagues, and even as I write these lines. I live in the short periods of time left between visits to the toilet. The fear is ever-present: will I be able to get to the toilet in time to avert embarrassment?

Yet the inner storm inside my body is invisible to others. Intestinal activity is viewed as a natural routine that everyone experiences, which makes my experience of my disability difficult to explain. My family, friends, colleagues, and yes, my doctors as well, do not always understand why I identify as a person with a disability after my surgeries. In the eyes of those around me, so long as I appear to be functioning “normally,” which I am able to do because I had my diseased colon removed, I cannot be considered disabled or ill.

10.2 Is chronic illness a disability?

“Illness is not a disability,” I was once told by a famous activist in the disability rights movement, who was completely paralyzed from the neck down. “I’m not sick,” he added. “I am disabled because of my illness,” I replied to him. In my experience, however, the distinction between illness and disability has been and continues to be elusive. LaCom (2007) expresses a similar sentiment: “I am neither or both, depending on the moment and my state of health. Do I thus revise and articulate my identity category on an ongoing basis?” (So—What has this to do with the politics of shit? section, para. 7).

The activist’s words reflect a criticism originally made by pioneers in the disability rights movement who took issue with medical professionals for thinking of disabled people as sick, diseased, and ill people. They posited, instead, that their bodies do not need to be cured, offering a social model of disability as an alternative to the medical one (Wendell, 2001). Yet people with chronic illness have criticized this social model of disability. While noting the positive social and political changes brought about by the model, critics have pointed out that disability rights advocates have historically distinguished themselves from the chronically ill (Wendell, 2001) and ignored the fact that some of the issues that people with chronic illness face cannot be resolved only by social arrangements (Inahara, 2009).

These critics have pointed out that some illnesses, for example, cause ongoing loss of function and are not expected to be cured. They require prolonged medical care, which means that people become a permanent part of the medical system and are accompanied by medical staff for many years. Furthermore, these critics say that disability rights advocates have not given sufficient attention to the oppression of people with chronic diseases by social structures and cultural norms (Zola, 1991). Lastly, they argue that by emphasizing social structures, modern disability rights movements have ignored the body, which was then “left” to health care professionals and scientists. They argue that this move has reinforced the biomedical view of the body (Crow, 1996; Wendell, 2001; Williams, 1999; Zola, 1991) and left out the accumulated lived experience of people coping with chronic illness and their knowledge about their bodies and illnesses.

10.3 Removing the mask of normalcy

A key distinguishing feature of the experience of chronically ill people is that they must not only manage their illness, but they must also struggle to achieve recognition for their illness. Evans (2017) has found that un/covering their illness “may be the only way to signal impairment to others and as such, serves as a site of resistance to pressures to pass as nondisabled.” Achieving recognition for the chronically ill body, though, differs from the struggle to achieve recognition for the outwardly disabled body, which “…demands a narrative, requires an apologia that accounts for its difference from unexceptional bodies” (Thomson, 2000, p. 334).

The disability of the chronically ill is often not visible to the outside world. Women with fibromyalgia, whom I interviewed (Finkelstein, 2013, 2014), described this feeling as “living with a mask.” For example, one of them shared this perception of her reality with me: “I am invisible. I see others but they do not see me” (Finkelstein, 2013, p. 166); another stated, “No one knows what is really going on with me inside” (ibid. p. 165). To achieve recognition, people with chronic illnesses like these two women must disclose their illness and explain their symptoms. In doing so, they risk being stigmatized for their illness, or not being believed because of their “normal” appearance. As Ellen Samuels (2003) writes, “…[P]eople with nonvisible disabilities not only are marginalized in disability communities but [also] walk an uneasy line between those communities and the dominant culture, often facing significant discrimination because our identities are unrecognized or disbelieved” (pp. 244–245).

Another difference between chronic conditions and visible impairments is that the former involve unexpected periods of outbreak and remission that are almost completely uncontrollable.¹ No outbreak is the same as the last, and it is never known how long it will last. This has a decisive impact not only on the lives of the chronically ill, but also on the way people perceive and relate to their physical condition, often leading to widespread expectation that their illness will simply “get better.” As Susan Wendell (2001) points out, “…[F]riends, relatives, acquaintances, employers, insurers and others …believe that [the chronically ill] should have recovered from their disease long ago” (p. 20).

10.4 Coming out of the closet

In the courses and seminars that I teach to medical and nursing students, I often choose to share my experience of coping with a chronic illness with my students. Following feminist pedagogy (Ropers-Huilman, 1999), I have found that by sharing my own experience with my students, I can best illustrate how oppressive cultural and social mechanisms shape the lived experiences of individuals coping with chronic illness, their quality of life, and their health. The act of sharing my experiences blurs the boundaries between me and the students, creating an experience that I hope will impact the way they interact with their future patients and those patients’ family members.

As future doctors and nurses, I see my students as agents of social change that can spread the message of how important it is to respect the body and its needs as a cultural value, especially when it comes to people with chronic illnesses.² I introduce my students to a broader discussion about the body as a flexible, variable, unpredictable entity, about different ways that we can know the body, and about the place of the patient in discussions regarding his/her body with experts, doctors, and representatives of the body politic. I teach the history and principles of the social model of disability, but I also want my students to challenge the social model from the perspective of people living with chronic diseases.

Sharing my illness with each new group of students may be seen as a recurring “coming out” event. As Ellen Samuels (2003) describes:

Nor is coming out a static and singular event… Certainly, there must be some people who experience such momentous comings out, but … we must still make decisions about coming out on a daily basis, in personal, professional, and political contexts.

(p. 237)

After telling my “secret” in class many times, I have gained further insight into how people with chronic diseases are forced to expose themselves time and again in order to have their needs recognized and met, and have in turn shared this insight with my students.

When preparing my courses, I give much thought to the timing of my “coming out,” and to what kind of information about my illness I want to share. Over time, I have discovered that “holding back,” keeping my story “a secret” and waiting for the “right” moment takes too much energy from me because I must constantly remind myself that I have not yet told them. On the other hand, when I choose to share the information on the very first day of class as part of my self-presentation, I find that I am then able to refer back to it when it is relevant to the subject of the lesson.

Another issue is that in the beginning of the course, students still lack the relevant theoretical knowledge to integrate my personal story into the right cultural and social context. It is, therefore, my responsibility to contextualize my narrative not only when I first tell it, but also throughout the course. First and foremost, it is important that I assure the students that I am sharing my story by choice, and that it is not a spontaneous act. It is also important to make it clear to them that I do not expect them to expose themselves either now or in the future, unless they choose to do so.

Georgina Kleege (Brueggemann, Garland-Thomson, & Kleege, 2005) writes that she also finds it best to discuss her disability with her students at the beginning of her courses because it directly affects her interaction with them. My situation is different than Kleege’s because as a blind person who uses a walking stick, she has a very visible disability. I, on the other hand, have an invisible disability, and must overcome the fact that my students often forget that I have a disability by repeatedly (re)disclosing it to them. Kleege writes,

In a way, my sort of larger goal about changing the world is that I would like for disability not to have this status as this thing that you don’t talk about and the thing that you can’t look at and the thing that’s so tragic, and so foreign, and so horrific that the polite thing to do is to pretend it isn’t there.

(p. 16)

I also aspire to a situation where it will be possible to talk about intestinal diseases openly and without the taboo surrounding everything that is associated with them (LaCom, 2007; Moore, 2013; Vidali, 2010).

“Coming out” is never an easy step for me. It is always a “rite of passage” that requires emotional effort and mental preparation. In my early years of teaching, I would use a kind of provocative “dark humor,” mainly in order to help me overcome the embarrassment. I used to ask my students to tell about the types of disabilities that they know and write a list of them on the board. They would usually raise physical and mental disabilities, sensory disabilities such as blindness or deafness, or cognitive and developmental disabilities. Then I would convey to them the idea of a hidden disability by discussing my research on women who suffer from chronic fatigue syndrome and fibromyalgia.

After exposing them to the difficulty, suffering, and disability associated with living with a chronic disease, we analyze the cultural context of living with an invisible illness. Then I would ask: “Do you think there are people among us who are chronically ill?” Invariably, no student had ever raised his/her hand and answered “Yes.” It is at this point that I would reveal my illness to the students. This piece of information would be intended to illustrate my point that there is a whole group of people who are disabled but invisible in our society. Over time, I began to simply share my illness rather than go through this routine. This second way is no less challenging for me or less surprising to the students than the first way, and I use their surprise to show to them that living with a secret is a frustrating and burdensome task, and that people who wear masks feel controlled not only by their disease, but also by the need to hide their illness.

My use of my personal story in the classroom also confuses some of my colleagues, mostly doctors, who do not always like the personal/emotional discourse in class and the blurring of the traditional classroom hierarchy. Some, on the other hand, join me and share their personal experiences as well. Over the years, I have learned how to better explain to my colleagues about why personal experience comprises a significant source of knowledge that can be used to teach the students about cultural structures, power relationships, values, beliefs, and stigmas, and how these shape the experience of other people with chronic illness. Student feedback over the years indicates that this strategy is effective in communicating the fact that the personal is also political, and that the classroom is a place for critical and subversive thinking.

Furthermore, there is always the question of what information to reveal. Do I want to answer any question about my personal life? Do I have to? I tell my students that they can ask me anything. I trust their common sense and their emotional intelligence. I want them to feel free to ask what is on their mind, and I hope that I will be able to break more barriers regarding people with hidden disabilities by responding to their questions. So far, I have not been asked a question that seemed to me to be irrelevant or inappropriate.

Another challenge is that it is not always easy for the students to distinguish between the emotional and the personal. Students sometimes interpret critical arguments as personal attacks against them, which trigger defensive responses: “This is not so”; “It is your subjective feeling, how do you know that this is how others feel?”; “I know someone who feels completely different”; and so on. In these cases, we sometimes lose the opportunity to integrate the personal and the theoretical. Rosemarie Garland-Thomson (Brueggemann et al., 2005) points out that her students often adopt a self-blaming tone when writing about the way that people wit...