A Deadly Silence:
Postsecondary Students Diagnosed With Bipolar Disorder
J. Karen Reynolds, Ph.D.
Assistant Professor of Educational Psychology
Lakehead University
Ontario, Canada
E-mail: jreynol1@lakeheadu.ca
I was nine years old when I saw a freak show. I can still hear the barker shouting, “See the elephant twins, seal man, fat lady, rubber man; freaks of nature! All yours for a quarter.” As the crowd pushed into a large tent, two figures appeared on a makeshift stage. The elephant twins wore short, terry bathrobes. Folds of leathery skin suggested arms, necks, and legs. When the display ended, the barker announced that postcards of the twins were on sale for ten cents. I rushed to buy my souvenir. I could not understand why the brother and sister were nude in the photograph. Years later, I learned that the twins shared a serious medical disorder called elephantiasis. The label “freak” took on new meaning for me. It came to signify individuals with mental and/or physical disabilities who existed on the borders of polite society.
Introduction
Bipolar disorder is a psychiatric label that is commonly characterized in terms of mood swings. This metaphor tends to communicate an image of depression and mania swinging from one cerebral pole to another. According to Lakoff and Johnson (1980), “the essence of metaphor is understanding and experiencing one kind of thing in terms of another” (p.5). The pole metaphor implies that bipolar disorder is situated in one’s head; it is not a whole body experience. Although metaphoric representation may promote comprehension of one concept in terms of another, it hides some features of a target concept. My label, bipolar disorder, tends to overshadow my skills and attributes such as carver, writer, professor, researcher, daughter, sister, friend, and mother to three cats.
A label becomes stigmatized when an associated metaphor(s) communicates primarily negative qualities. Several years ago, a colleague gave me a cartoon that depicted a polar bear lounging on a block of ice. “I’m bipolar,” was printed in the talk balloon above the bear’s head. I did not find the cartoon funny. My discomfort with the bipolar bear took me back to the horrible fascination that I had felt as a child for the sick and disabled individuals in the freak show. However, I was no longer a member of the audience. The bipolar bear metaphor placed me front and center on the stage. Shame and fear washed over me as I contemplated my role in the show.
Stigma
In ancient Greece the term “stigma” referred to cuts in the flesh of individuals deemed social outcasts (Goffman, 1963). Early Christians assigned two metaphors to this term. The first metaphor signified corporeal signs of holiness. The second, a clinical application of the religious assignation, referred to physical disorders. According to Foucault (1965), stigma associated with mental illness grew out of the reduction of leprosariums. During the seventeenth century, lazar facilities were emptied of lepers and replaced by criminals, the poor and homeless, and individuals deemed mad. Cultural beliefs and practices associated with leprosy persisted and public understanding of mental illness was stigmatized. An overarching metaphor of exclusion and stigmatized labels structured lazar houses and the ideology and related practices of asylums.
Characteristics of Bipolar Disorder
The American Psychiatric Association’s (2000) “Diagnostic and Statistical Manual of Mental Disorders” states that defining features of bipolar disorder, or manic depression, are represented by mood swings from depression to mania and vice-versa.
Causes of the disorder are not known. Medical professionals rely on symptoms to diagnose the illness (Simmie & Nunes, 2001). Approximately one person in every hundred is identified with the disorder (Watson, 2003). Eighteen appears to be the average age of onset for bipolar 1 and twenty-two for bipolar 11 (Barlow & Durand, 2002); a common age range for postsecondary undergraduate students. 35% of bipolar disorder cases begin during late adolescence (Edwards, 2002). There is no cure.
Bipolar 1 is regarded by some as the original form of manic-depression (Mondimore, 1999). The patient experiences full-blown periods of mania and depression. Before treatment, an episode could last as long as six months or even years. Bipolar 11 is characterized by severe depression and less intense hypomanic incidents. It is a milder form of bipolar 1. A diagnosis of rapid-cycling bipolar disorder indicates that the patient experiences four or more occurrences in one year. Episodes consist of mania, hypomania, depression, or mixed state.
Studies
In 2003 and 2005 I conducted studies regarding experiences of postsecondary students diagnosed with bipolar disorder in two Canadian universities (Reynolds, 2003). The 2003 study took place at a mid-western university. The 2005 research was situated at a university located in central and northern Canada.
Participants learned about the research from posters that were posted in faculties of education, cafeterias, student service offices, and student health centers. Interested individuals telephoned my office to schedule an interview. Participants were selected from volunteers who had a diagnosis of bipolar disorder, were under medical care, and could articulate their experiences. Seven individuals took part in the first study and four were involved in the second study.
Interviews were informally structured and taped for later transcription. They were conversational and offered participants flexibility to explore and articulate insights and concerns. Each interview was approximately one to one and one-half hours in length. The following questions served as guides to discussion of major issues: 1.) How does bipolar disorder affect your self-esteem? 2.) How does the disorder influence your relationships with friends and family? 3.) What types of program modifications support your learning needs? 4.) Can you describe your experiences with faculty regarding your learning needs? 5.) Can you talk about your experiences with stigma?
Each participant was invited to edit interview transcripts; to add, delete, and clarify statements. Data-analysis focused on identifying key themes and categories pertaining to participants’ experiences. Content analysis techniques generated findings and corroborated multiple perspectives associated with stigma, learning, and achievement.
Theoretical Framework
My theoretical framework is informed by Wertsch’s (1991; 1995) theory of “mediational means” and Bourdieu’s (1986; 1990) theory of “capital” or power. Both theorists share an assumption that human activity is purposeful, culturally mediated and socially situated. Within this context, I explore the impact of the psychiatric label “bipolar disorder” on the experiences of a group of postsecondary students.
Bourdieu (1986;1990) suggests that various forms of “capital” or power mediate human activity. He is particularly interested in means by which “capital” is produced, distributed, and exchanged. Specifically, “cultural capital” consists of legitimate knowledge manifest in dispositions, cultural goods, and qualifications. “Social capital” embodies group membership and valued relationships. These components of Bourdieu’s theory helped me to understand that access to educational opportunity was unevenly distributed among postsecondary students diagnosed with bipolar disorder.
Like Bourdieu, Wertsch (1991; 1995 ) explains that interconnections among human action and setting are understood as focusing on contexts wherein people engage in goal-oriented activity by means of cultural tools or “mediational means.” “Mediational means” consist of language and cultural tools that bridge peoples’ actions and cultural, social, and institutional settings. For example, a student’s “cultural capital” is strengthened when he/she benefits from needed program modifications or “mediational means.” Modifications may include note-takers, computer technology for visually impaired students, audio support for hearing-impaired individuals, extra time for completion of assignments and exams, and locations with minimal distraction for exams. “Social capital” or group membership tends to be enhanced when a student experiences success with learning and achievement. I compared the interpretational framework with key themes constructed from my analysis of participants’ comments to construct findings and recommendations. In the next section, I explore major themes from students’ perspectives in the 2005 study.
Findings from Interviews with Students
March 2005
a) Female, 28; diagnosed with bipolar disorder at 14 years of age; 4th year concurrent education student.
b) Female, 26; initially diagnosed with depression when 21 and later with rapid-cycling bipolar disorder; degree program - outdoor recreation, visual arts, history.
c) Female, 21; diagnosed at 17 years of age; studying languages – French, Spanish and Finn.
d) Female, 28; diagnosed with depression when 15 years old and bipolar disorder 2 in early twenties; degree program – psychology.
Content analysis and triangulation of interview transcriptions generated themes associated with stigma, learning, and achievement. Following is an exploration of these themes from participants’ perspectives. All interviews were conducted in March, 2005.
Stigma
The label “bipolar disorder” stigmatized this individual:
The diagnosis always makes me feel different, like I don’t fit….you don’t seem to have…normal relationships. You feel pretty isolated.
One student expressed profound sadness with her illness in the following excerpt:
I think of how it would be if I wasn’t here anymore, and I didn’t have to struggle all the time. I don’t experience much pleasure in my life anymore.
Participants worried that stigma associated with mental illness negatively influenced relationships with family, friends, peers, and faculty members. One participant expressed her concerns regarding stigmatization within the context of teaching:
I’ve never let an employer know (about my disorder) because I think automatically that they’d say that this person can’t be trusted with students. What if they freak out?
She described the discrimination that she experienced while working as a guide in a camp for young people. Before beginning her duties, she disclosed her illness to her employer and her need for lithium:
In hindsight I wouldn’t have told [him]. But . . . should bipolar make you lie . . . ? So we came to an understanding because I will not give it [(medication)] to you [(employer)]. You will have to physically come and take it from me. . . . I will not sacrifice my independence. I will not have that stigma . . . like I have to go to the doctor every day to get my meds.
Learning
One woman commented that most of her professors were supportive but that her learning needs required greater attention:
I found professors here awesome; nine out of ten professors were willing to help out. They gave me what I asked for, but in hindsight they didn’t help me because how did they confront the problem? So getting extensions and extra help . . . just prolongs the situation.
There are further comments on disabled communication caused by the stigma associated with bipolar disorder:
[T]here are some professors who are very personable. . . . I felt support, but it’s not something that I feel that I can go up to anybody and say, “Well, I have this problem.” I mean it’s not their problem. . . . There’s a lot of guilt and shame. . . . [A]sking for more time for certain things, you feel like a failure. And you feel that other people struggle more than you, so why should you be given any extra support.
One participant explained that classification of bipolar disorder as a learning disability was not a common practice:
It’s [(bipolar disorder)] not a learning disability. If you have ADD they give you a laptop and one of those fancy little things to record lectures and they give you [access] to thousands of dollars of equipment. . . . People with bipolar [disorder] . . . don’t necessarily have the ability to go to the learning assistance center and say, “I’m getting behind.” If we did that we wouldn’t have the problem in the first place.
Achievement
Sentiments regarding difficulties with school were echoed among participants:
I used to consider myself a smart girl. This year I’ve always struggled. . . . You wonder what it would be like to live a day . . . knowing that you don’t have to take pills to function normally.
The following student assumed that she must learn to assimilate and become independent to survive in society:
Academe can help you, but at the end of the day the world isn’t going to shift for you. You have to be able to function to a certain degree within the structure of the university. Cause if you can’t, how are you going to have a job if someone has to hold your hand all the time? . . . Maybe the education department’s . . . responsibility is to teach someone bipolar how to teach. Not just how to get through university, but how are you going to take your being bipolar into the classroom? And how are you going to make that work? Because you can’t make it work by pretending that you are treated enough that you won’t be bipolar from time to time. So maybe it’s finding out a way to teach new methods to do that. . . . I think that is separate from finding a way to help students learn. I think that it’s also teaching you how to teach. I think it’s possible for a bipolar person to hold a normal job. I think it’s their responsibility to figure out a way to make it work, and from an education setting, why not figure out a way to teach them how to teach?
These comments generate an interesting possibility for faculties of education in particular and all faculties in general. That is, instead of teaching a student to succeed in spite of his or her disorder, teach students to succeed with their disorder.
Discussion of Findings
When I examined findings from both studies in terms of Bourdieu’s (1986) theory of “capital,” I gained deeper insights into stigma, learning, and achievement as sites of struggle among students, faculty, and peers for recognition, acceptance, and equitable access to educational opportunity. Participants feared that the stigma of mental illness contributed to rejection by peers and faculty. Consequently, most individuals did not talk publicly about their disorder. Marginalization led to social isolation and/or partial or complete absence of necessary program modifications; bankrupt social and cultural capital. Participants assumed that stigma associated with bipolar disorder compromised access to learning and achievement. They struggled to learn and compete for marks and grades or institutionalized cultural capital without needed supports.
Several participants thought about suicide. According to Mondimore (1999), rates of suicide among individuals identified with bipolar disorder are thirty to eighty times higher than observed in the general population. Suicidal thoughts and behaviors tend to be symptomatic of the illness. Contributing factors consist of stress, isolation, loneliness, low self-esteem, stigmatization, learning difficulties, poor marks and grades, substance abuse, depression, sleep disorders, and hopelessness (Simmie & Nunes, 2001). A cycle of learning disabilities, low marks and grades, poor self-esteem, isolation, manic and depressive episodes, loss of voice, and side-effects of medication contributed to suicidal ideation.
Overall, participants wanted to be fully recognized and accepted members of the university community. They wanted a voice in decisions that affected their access to education. In addition, they agreed that appropriate and effective modifications to course work were fundamental to their academic success. Wertsch (1991) describes the power of cultural tools such as program modification strategies to positively mediate performance in the following excerpt:
We can never “speak from nowhere,” given that we can speak (or more broadly, act) only by invoking mediational means that are available in the “cultural tool kit” provided by the sociocultural setting in which we operate. ( p. 25)
Within this context, identity, learning and achievement were situated within, and by, access to cultural tools such as language, technology and other forms of mediational means. When a student’s access to modifications was limited or denied, sense of self and successful participation in a course were compromised. Within this context, stigma associated with a psychiatric label contributed to inappropriate and unequal access to educational opportunity.
Bourdieu (1986) characterizes unequal opportunity in a field of human activity in terms of the following game metaphor:
[T]his imaginary universe of perfect competition or perfect equality of opportunity, a world without inertia, without accumulation, without heredity or acquired properties, in which every moment is perfectly independent of the previous one, every soldier has a baton in his knapsack, and every prize can be attained, instantaneously, by everyone, so that at each moment anyone can become anything. (p.241)
Just as members of the general public are not equally equipped to compete successfully for society’s goods and services, postsecondary students diagnosed with a mental illness may compete for high grades and social acceptance without needed supports. Some people have more power than others to create and consecrate labels; that is, to decide how one is positioned and valued in relation to cultural beliefs and practices. Often recipients of labels have little or no voice in the process.
Concluding Comments
“It’s a hell of a nuisance once they’ve had you certified as nutty,” Nick said. “No one ever has confidence in you again.” (Hemingway, 1987, p. 310)
The experiences described in this paper may have value for others who seek to gain deeper insights into educational experiences of postsecondary students diagnosed with bipolar disorder. When stigma associated with a psychiatric label silenced a participant, she forfeited access to needed assistance. Mediational means, such as program modifications, were important to students because they represented access to cultural, social and economic capital; cultural capital in terms of high marks and grades, social capital consisting of membership in valued groups of people, and economic capital regarding possible gainful employment.
Education systems tend to arrange themselves according to imperatives of their own reproduction. Within this context they broker an economy of practices within which students competed for high grades, social acceptance, and resources. Participants were poorly equipped to compete with non-disabled peers for academic success. Participants found themselves at a disadvantage, and even at risk, in terms of their learning and achievement. Bourdieu (1974) describes how stigma is naturalized within school systems in the following excerpt:
[schools] transform defacto inequalities into de jure ones and economic and social differences into distinctions of quality, and legitimates the transmission of cultural heritage. . . [T]he . . . educational and social system, help to enclose the underprivileged classes in roles which society has given them by making them see as natural inability things were only a result of inferior social status. (p. 115-116)
Within this context, a mental illness may be characterized by a school system as a natural/biological inability, when in fact the etiology of such illness is rooted in centuries of discrimination and stigma.
Participants shared a common concern that stereotypical attitudes towards people with psychiatric labels should be eliminated. One woman described the relationship between sanity and mental illness in the following manner:
I know that you’re never fixed, but I think that someone whose dealing with it [(mental illness)] is probably more sane than your average person because you’re being forced to address your emotional responses every day.
Students recommended that public education and professional development regarding bipolar disorder in particular, and mental illness in general, be carried out within and across faculties and student groups. A primary objective of such activity would be to reduce stigma by informing faculty and students about causes, characteristics, medication, learning, achievement, and life-style issues associated with bipolar disorder. Furthermore, if bipolar disorder was classified as a learning disability then learning assistance centers would have a mandate and possibly increased funding with which to support students directly affected. Public education associated with this strategy may reduce stigma associated with the psychiatric label. According to Jamison (1995), there is no comfortable way to disclose the disorder to others. She comments that, “despite the fact that most people that I have told have been very understanding . . . I remain haunted by those occasions when the response was unkind, condescending, or lacking in even a semblance of empathy” (p. 199).
The special needs population is expanding with increased awareness of learning issues being brought into classrooms. By extension, these students will go to postsecondary institutions. Some will be diagnosed with a mental illness such as bipolar disorder. Students in the studies perceived stigma associated with mental illness to be the most debilitating influence on their quality of life. A recent graduate of a Faculty of Education commented that, “the first thing that has to happen is we need to make it okay to have bipolar disorder. Because if you can’t make it okay, then you can’t help anybody, because they’re not going to say anything” (Interview, April, 2003). To “make it okay to have bipolar disorder,” requires acceptance and support of all individuals involved with these students. These people include networks of professors, instructors, medical professionals, learning assistance personnel, staff, administrators, peers, nuclear and extended family, and members of the community.
Bipolar disorder can be a dangerous condition. So dangerous that suicide is regarded as a symptom of the illness. Students diagnosed with bipolar disorder often felt abandoned and alone. Their inability to control mood swings frightened them. The negative impact of medication on cognition and metabolism heightened feelings of helplessness. The following excerpt underscores the urgency with which we must act to support postsecondary students diagnosed with bipolar disorder:
I think of [what] it would be like if I wasn’t here anymore, and I didn’t have to struggle all the time. Cause it just seems like a constant struggle. Who wants to struggle everyday of everyday of everyday? (Interview, March 2005)
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