Power, Education and Recovery with Mental Illness

J. Karen Reynolds, PhD
Assistant Professor of Educational Psychology
Lakehead University, Ontario, Canada
E-mail:  karen.reynolds@shaw.ca

In this paper I explore key relationships between education and recovery with mental illness from the perspective of a group of consumers/survivors. The term consumer/survivor refers to individuals who have been “diagnosed with and often hospitalized for serious mental health problems, such as schizophrenia, unipolar depression, and bipolar disorder and who participate in self-help/mutual aid organizations” (Nelson, Ochocka, Griffin, Lord 1998, p. 6).  Within this context, participatory action research offers opportunities for consumers/survivors to confront stigmas and act as agents of change in their own lives and in the lives of others who are directly affected. Participatory action research empowers participants by amplifying their voices and concerns. Members of a community take part in the process.

Harding (1993) explains that some points of view are more appropriate for knowledge production projects than are others. She comments that research and attendant knowledge claims should “start off thought from the lives of marginalized peoples; beginning in those determinate, objective locations in any social order will generate illuminating critical questions that do not arise in thought that begins from dominant group lives” (p.56). Within this context, participatory action research seeks to obtain knowledge and the meaning of experiences from standpoints of individuals directly affected.

Participants

Four female consumers/survivors acted as participants and co-researchers. Participants met while members of several local self-help advocacy groups that fostered public education regarding mental illness. Each co-researcher invited two additional consumers/survivors to participate in the study. The primary researcher was also a consumer/survivor.

 Co-researchers agreed to share tasks pertaining to clarification of research questions, data-collection strategies, analysis and interpretation techniques, and discussion of findings. We met during a period of approximately six months to discuss and develop key aspects of our roles. Topics consisted of:

• Clarification of proposal and roles of co-researchers; protocols/ethics
• Data-collection techniques: field-notes, interviewing procedures and policy documents pertaining to mental illness recovery in Ontario
• Data-analysis practices: content analysis, generation of themes and categories
• Writing findings. 

Data-Collection

Data was collected from field notes, informally structured interviews and policy documents. Co-researchers kept substantive, methodological, and analytical field-notes. Substantive field notes described daily accounts of circumstances, events, and discussions in which we participated.  Included in these notes were ongoing reflections concerning the conduct of the study in terms of problems, successes, and questions.  Methodological notes tracked changes in research questions, data-collection techniques, and the time-line for the study. Analytic notes consisted of reactions to daily experiences in the form of questions, concerns, and hypotheses. By recording personal reflections, we monitored our interpretations of events and relationships.
 
Semi-structured interviews were utilized to obtain experiential descriptions from participants (Ray, 1990). Van Manen (1990) suggests that being very concrete and asking the participant for specific examples is one way of staying close to the participant’s lived experience. Within this context, the semi-structured interview was a useful technique for gathering information about an individual’s standpoint regarding particular issues (Yin, 1994). Interviews were conversational and offered participants flexibility and latitude to explore and articulate their insights and concerns.

Each consumer/survivor conducted one or more informally structured and taped interviews with individuals identified with a mental illness. Each interview was approximately one hour to one and one-half hours in length. Interview questions included the following:

• How might you describe your experiences with schooling before and after you were diagnosed with a mental illness?
• How did your illness affect your learning and achievement?
• In what ways do you learn most effectively?
• How did teachers support your learning and achievement needs?
• How did parents/guardians support your learning and achievement?
• What role did peers play in your education?
• What kinds of assistance would have positively supported your education?
• How has education influenced your recovery with mental illness?

The questions served as a guide to discussion of major issues associated with mental illness and education.  In the event that a participant experienced discomfort during the study, she was encouraged to call her family doctor, therapist or the local crisis phone number.

Policy documents associated with mental health were collected throughout the study. This material was analyzed for key terms and major themes. In particular, content analysis focused on identifying who wrote them, why they were written, for whom, and their major assumptions about interpretations of key terminology, practices, and implementation issues. They offered another standpoint from which to corroborate and expand information from interview and observation data.

Data-Analysis

Data-analysis was ongoing throughout the data-collection period and writing of findings. Strategies involving content analysis techniques and data-triangulation were used to generate findings and corroborate multiple perspectives associated with themes and categories. Within this context, data-sources consisting of field-notes, interview transcriptions, and policy documents were triangulated.

In my role as primary investigator, I took responsibility for data-analysis tasks in corroboration with co-researchers. During the first two readings of transcripts, notes, and documents, I colour-coded recurring words, phrases, and images. As the incidence of repetition increased I constructed and classified themes. By the second reading, I marked some selections with multiple colours. Layers of colour indicated interconnected themes. I made notes about the nature of the interconnections.
 
By the third reading of data, I added themes to the list. Under each theme, I created key-word notes to describe major components. Next, I collapsed closely connected themes to create categories. Under each category, I wrote key-word notes that indicated source and date of acquisition. Data were triangulated along intersecting axes consisting of method, time, space, and people. Content analysis and methodological triangulation corroborated multiple perspectives associated with theme and categories.

Theoretical Framework

I drew from Bourdieu’s (1986; 1990) theory of “capital” or power to interpret participants’ views regarding education and recovery. His theory is framed by an economic metaphor that illuminates unequal relations of power among individuals. Within this context, people compete for “capital” by means of goal-oriented activity within and across fields.

Bourdieu (1986) suggests that various forms of capital mediate human activity. He describes “cultural capital” as legitimate knowledge manifest in dispositions, cultural goods and qualifications such as academic diplomas. “Social capital” involves group membership and valued relationships. “Economic capital” consists of financial resources. Access to “capital” is distributed unequally among people. Bourdieu (1974) explains that,

…The whole educational and social system, helps to enclose the underprivileged classes in roles which society has given them by making them seem as natural inability things which are only a result of inferior status, and by persuading them that they owe their social fate (which is increasingly tied to their educational fate) to their individual nature and their lack of ‘gifts. (pp. 115-116)

In the next section, participants describe their experiences with mental illness and education.

Selected Participant Profiles

Grace: unemployed, grandmother, diagnosed with bipolar disorder.

Jay:  professor, diagnosed with bipolar disorder, single.

Fran: mental health worker, diagnosed with multiple personality disorder, married with one grown child.

Kate: mental health worker, diagnosed with depression, married with two grown children.

Jane: unemployed diagnosed with depression, two grown children.

Paula: diagnosed with narcissism.

Experiences with Schooling before Diagnosis

Jane mentioned that she did well until she reached high school where she experienced racism:  “I realized that it doesn’t really matter how much you know. It is whether you are considered to be acceptable or not.”       Jay did not like school and did not do well until she enrolled in graduate studies: “I didn’t know if it was because of being bipolar and we didn’t know it or what. But I really had difficulty at school. I think that the reason I hated school was because I was so bored. It was numbing. It was prison like to be in those classrooms.”  Grace’s primary recollection about schooling before her diagnosis focused on sexual abuse, racism and religion. After cousins sexually assaulted her she became withdrawn. At school, God was portrayed as omnipresent. This realization fed Grace’s paranoia. Talk about the devil, purgatory and Hell added to her feelings of fear and discomfort. She mentioned that racism occurred among students and teachers. Overall, teachers knew little or nothing about mental illness. The high school where she attended was primarily white. Upon graduation, she entered an all-Native college where she thrived. When the college closed, Grace went to Montreal to study.
 
Experiences with Learning after Diagnosis

Jane explained that she was not diagnosed with clinical depression until she was 38 years old. She took the Web Development Design Course at the Toronto School of Business:  “I passed with an Honours diploma. I had trouble because even though the classes were I’d say a third Native, they had no cultural sensitization or no cross-cultural activities that assisted even the teachers in treating people equally with humanity and dignity.”  Jane also commented that medication made it difficult for her to think:  “With the drugs they gave me I couldn’t think anymore. I found it incredibly difficult to even park my car, never mind thinking in terms of getting an education or learning.”

Vicky remarked that by the time that she was diagnosed she was in university. Medication contributed to fatigue and difficulty concentrating. Most disturbing was her obesity. She mentioned that she had to sit on the stairs in an auditorium because she was unable to sit in any of the seats. According to Vicky, side effects negatively impacted her learning.  After she was diagnosed, Paula said that she was happy to receive medication that helped her to escape:  “I wanted to escape the world. So it wasn’t helping me with getting better, it was allowing me to escape and get into my little black hole.”

Paula eventually took medication that caused her to develop tardive dyskinesia. This condition tends to be a side effect of anti-psychotic medication such as haloperidol. Tardive dyskinesia is characterized by repetitive movements that appear to be involuntary and without purpose. Tongue protrusion, frowning, puckering of the lips, and quick blinking of the eyes may accompany rapid movements of the body (Schwartz, 2000).

Jay was 36 years old when she was diagnosed with bipolar disorder. Initial side effects from haloperidol, chlorpromazine, and lithium consisted of difficulty seeing, lethargy, and dry mouth. Later side effects of lithium and prozac included fatigue, difficulty with task completion and poor concentration. Three years after her diagnosis, Jay was in graduate school:  “I still get tired, and I think I have more difficulty accomplishing my workload than others. I do it but it takes me longer. Does this mean I’m less capable or does it mean that the lithium and the bipolar are messing with me? It’s a constant struggle.”

Fran was diagnosed in the mid 1990s while studying for a degree in psychology. She experienced numerous hospitalizations during which she received heavy medications and electro-convulsive therapy. Medications contributed to difficulties in concentration, information processing, short-term memory, and psychomotor retardation. These difficulties continue to linger.

After Fran engaged in scream therapy, she realized that she could no longer suppress her anger. Her alter egos gained free expression:  “Some alters got me into trouble, like a really angry adolescent male. My others are still there. I want them there. I would feel empty without them.”

After Grace was diagnosed in her 30’s, she no longer participated in formal schooling. She mentioned that medication caused tremors, difficulties with information processing and impaired social skills. In addition, she was in an abusive marriage with two children. She eventually took the children and left her husband. Grace assumed that some people thought that she was dumb because she did not finish high school. She continued to learn and achieve as a volunteer in the psychiatric community.

Family and Peers

Grace’s preference for learning by example began when she accompanied her mother and aunt on a trapline. Years later, she was disturbed to learn that her family was ashamed to have someone with a mental illness in their midst. She moved to an urban center where she might avoid discrimination from her people and to be close to medical facilities. She has made many non-native friends since her diagnosis and fewer native friends. Grace commented that being “a bipolar Indian” was like trying to balance two worlds.

After Fran entered university, she withdrew from most people. She focused exclusively on studying and grades. Fran felt pressure from her parents to achieve. It disturbed her when they compared her to her brother. Even though she often felt worthless, she was dedicated to learning everything that she could from her parents.

Paula explained that she was the youngest of eight children. Her family did not believe that she had a mental illness and often made fun of her. Paul also felt that she was the target of negative beliefs from other nursing students and supervisors:

When you are talking about education and mental illness, I think it was probably fear with mental illness, you know I might make a mistake and kill somebody. I mean, you’re given the most negative beliefs once you’ve been diagnosed. Because of my having psychiatric difficulties they weren’t going to allow me to finish Nursing School.

Vicki was older when she attended university and did not have a peer group. She explained that it would have been helpful to be part of a group of students who were going through the same things. She mentioned that her best support came from her partner while she attended university. Vicki mentioned that her parents were not supportive of her education. The only feedback she received was admonition for her poor grades. Her children were taken away by their father.
 
Jay commented that her father was gone by the time she was 13 years old and her mother was strictly achievement oriented. She had difficulty accepting Jay’s disorder. After she ran away from home when she was 17 years old, she made numerous friends:

I got heavily involved in the drug culture; into drinking and drugs and trouble. So my friends were bad news. I mean dealers and people like that, they prey upon those who are alone and vulnerable. And I was alone and vulnerable. I knew it was wrong to use drugs but the bottom line was that they were nice to me—like I could be part of the group. And I desperately wanted membership in some group. And I’d never had it, so I finally had it with people in the drug culture.

Jane pointed out that her parents were very supportive of her learning until they separated. After this event, there was little money for her support. She began to experience problems at school and decided that marriage might solve her difficulties. It turned out to be a very violent relationship.

Jane had a support group of friends in high school:  “We were like the anti-clique. Nobody wanted to be around our group. We were all the misfits. We liked being with each other, and we helped each other; when I was older, though, less and less support in terms of education.

Teaching and Learning

Vicki explained that her professors were very supportive:  “Sometimes I was going to classes as an inpatient. I would leave the hospital in the morning, go to the University, do my classes and then go back to the ward. Every one of my professors was just excellent.”  She explained that the university arranged for her to have a note-taker. This resource was a valuable support for her learning. Vicki added that she appreciated professors who wrote notes on the board while they talked. Two modalities instead of one strengthened learning. Vicki commented that she received valuable help from the Native Support Program. She was able to get papers edited and typed and could send messages to her other Professors when she needed help:  “The professors were really excellent. None of my professors looked down on me because I was Native. There was absolutely zero racism when it came to professors.”  Vicki pointed out that she learned most effectively in small groups:  “Your professor actually comes to know you personally, they know your name and they know your face.”

According to Fran, some teachers were bullies; they made fun of students when they appeared to have difficulty learning. Fran desperately sought approval from teachers. By the time she went to university, she realized that something was wrong. She was unable to confide in any of her professors. Fran believed that symptoms of mental illness were present in her obsession with the tenet, “Physician heal thyself.” She studied psychology to learn how to heal herself. Fran and Jay both hoped that postsecondary degrees with components of psychology would insulate them from stigma. In particular, Fran wished she had known about her diagnosis earlier in life. Neither she nor her parents would have thought that she was stupid and worthless if they had been aware of her psychiatric labels. Fran wanted to do something meaningful with her life; something that involved communicating her skills. Overall, she wished that she had been taught to trust her reality as opposed to an alien reality.

Paula went to see a professor in the field of mental health after she attempted suicide the first time. The professor explained that she was not going to become involved with these types of situations. Paula commented that “she realized that I was a goner and so she got an appointment with a psychiatrist.” Paula commented that the “worst person to go to when I was experiencing problems would have been my professors.” She added that they appeared to be undereducated regarding mental illness and lacking in empathy for consumers/survivors.
 
Education and Recovery

Paula explained that education has been fundamental to her recovery. In particular, it helped her to combat stigma:

Without education I don’t think I would have had the knowledge or the ability to fight back. I wouldn’t be on this radio show where I am desperate to help the general public understand mental illness, what it’s like to live with mental illness and how they can help us. And to help people with mental illness understand their illness. Because from there comes recovery. Without education I wouldn’t be where I am and I wouldn’t be able to help as much as I feel I can.

Paula mentioned that had it not been for her education she might have been like other patients who did not realize that they were being abused. She recalled when she slept through supper and was unable to get a meal. The server said that there was no more food available after 5:00 p.m. Paula pointed out that it was exactly 5:00. She stood her ground and was eventually given a two-week old dish of J-ello.

Vicki explained that education had a positive impact on her recovery because it forced her to move herself beyond depression and into the classroom:

Sometimes when you have to just go out the door and face the world it helps you to get better faster and just stay stable. The one thing that I do know about getting an education is it makes you feel like you don’t just have to go and wash dishes anymore. It makes you feel that you might be able to get a job that you really enjoy. I think that an important part of your education is enjoying your job and helping somebody.

Unlike Viki, Jay commented that education had little to do with her recovery:  “And I think there is something wrong with that. Self-help groups have been more important. I don’t think that formal education is really prepared to deal with mental illness among students. I think I’ve gotten through the system by hook or by crook.”

Jane explained that education increased her self-esteem:  “Education has shown me that I do have the ability to think. It put a little piece of paper in my hand saying that I could do it and nobody could ever take that paper away from me. And its given me more self-esteem and that I think is the real key to recovery.”

Grace mentioned that the most significant education that she had received was within and across organizations in the psychiatric community. Just being a consumer/survivor has been a real education.

What Needs to Change?

Jay explained that education facilities should work closely with mental health organizations. She mentioned that the education field was relatively ignorant regarding mental health issues and schooling. Grace and Jay believed that teachers and professors needed to be educated in terms of mental health and learning. Jay stated that the whole teacher education model should begin with humanitarianism. Within this context, she believed that courses in educational psychology should be contextual.

Paula recommended that families should be included in counseling. In this way, they may be more equipped to help individuals who have been diagnosed with a mental illness.

Fran assumed that more support ought to be available for consumers/survivors with a postsecondary education. She commented that too many individuals were doing menial work. Fran pointed out that she wanted to do meaningful work that was commensurate with her skills.

Conclusion

Bourdieu’s (1986; 1990) economic metaphor underscores unequal relations of power among individuals:  “Knowledge of the social world and, more precisely, the categories which make it possible, are the stakes par excellence, of political struggle… struggle for the power to conserve or transform the social world by conserving or transforming the categories through which it is perceived” (Bourdieu, 1985, p. 202).  Within this context, people compete for “capital” by means of goal-oriented activity within and across fields.  Access to “capital” is distributed unequally among people. Access to education in terms of learning and achievement is differentially distributed among participants. According to Bourdieu (1974),

…The whole educational and social system, helps to enclose the underprivileged classes in roles which society has given them by making them seem as natural inability things which are only a result of inferior status, and by persuading them that they owe their social fate (which is increasingly tied to their educational fate) to their individual nature and their lack of ‘gifts. (pp. 115-116)

Participants who acquired either a high school education or a postsecondary education were able to find gainful employment. Individuals who did not finish high school tended to rely on a disability pension. Within this context, the field of education brokered access to employment, financial stability, housing, valuable relationships, and a positive image.
 
According to participants, stigma associated with mental illness was a regular and ongoing problem. Education tended to be interrupted when an individual felt discriminated against by family, teachers, and/or peers. It was not uncommon for participants to drop out of school, become hospitalized, and/or to experience low achievement.

The overarching message of participants was that stigma must be eliminated from all aspects of society, especially in the education field. Although several participants experienced positive feedback from teachers, they commented that more work needs to be done to create safe learning environments. Fair access to educational opportunity ought to be shared by all members of society. Fairness may be achieved by means of appropriate program modifications and supportive social settings. In particular, public education regarding stigma associated with mental illness should focus on destabilizing and even eradicating stigmatizing beliefs and behaviours.

Public prejudice is a serious problem for the mentally ill. Twenty-percent of Canadians will experience a mental illness (Canadian Alliance on Mental Illness and Mental Health, 2000). According to Kirby, M. and Keon, W. (2006), outside of leprosy has there been as much discrimination against the consumer/survivor. Mental illness today is too often regarded as a disgrace to be silenced or a welfare problem to be dealt with as frugally as possible. Some steps have been taken to reduce stigma associated with mental illness but we have a long way to go.

References

Bourdieu, P. (1990). The logic of practice. Cambridge: Polity Press. Translation of French Edition 1980.

Bourdieu, P. (1986). “The forms of capital.”  Richardson, J.G. (Ed.), Handbook of theory and research for the sociology of education (pp. 241-258). New York:  Greenwood Press.

Bourdieu, P. (1985). “The social space and the genesis of groups.” Social Science Information, 24(2), 195-220.

Bourdieu, P. (1974). “The school as a conservative force: Scholastic and cultural inequalities.” Eggleston, J. (Ed.), Contemporary research in the sociology of education. London: Methuen.

Canadian Alliance on Mental Illness and Mental Health (2000). A call for action: Building Consensus for a National Action Plan on Mental Illness and Mental Health. A discussion paper prepared by CAMIMH. Canada.

Harding, S. (1993). “Rethinking standpoint epistemology: What is ‘strong objectivity’?” In Alcoff, L. & Potter, E. (Eds.), Feminist Epistemologies (pp. 49-82). London: Routledge.

Kirby, M. & Keon, W. (2006). Out of the shadows at last: Highlights and Recommendations. Final Report of the Standing Senate Committee on Social Affairs, Science and Technology. Ottawa, Canada.

Ray, M. (1990). “Phenomenological method for nursing research.” N.L.Chaska (Ed.), The nursing profession: Turning points (pp. 173-179). St. Louis: C.V. Mosby Co.

Van Manen, M. (1990). Researching lived experience: Human science for an action sensitive pedagogy. London, ON: The Althouse Press.

Yin, R. K. (1994). Case study research: Design and methods (2nd. ed.) London: SAGE Publications.

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