Abstract: "Analyzing a Memoir of Disability" is a semester-long project that promotes learning about disability and culture through group reading and writing about a single memoir. Students in an Introduction to Rehabilitation and Human Services course completed a textual analysis by using a memoir and course textbook to contextualize one another. Writing was framed as a collaborative, multi-step process that cycles through writing, discussing, and writing again. Students were required to regularly integrate course concepts with their assigned memoir readings to prepare for their in-class book club meetings. The project culminated in a formal group paper of 5-7 pages. Despite some logistical challenges, the project was well received, highlighted by many students as their favorite part of the course, and appeared to ignite a passion for reading, writing, and the material under study in many students.
Students enrolled in RHS 100: Introduction to Disability Studies completed a semester-long book club project that required reading a memoir about a disability experience. Rehabilitation and Human Services is a major designed to train students in the foundations of counseling and advocacy to work with people impacted by disabilities. The introductory course is taken not only by major students, but also students majoring in related areas, including special education, kinesiology, and psychology. Students were offered seven different memoirs to choose from, each representing a different disability, and self-selected into groups with an average of five students. While engaging in slow reading, students regularly met during class time to discuss their book and its relationship to the foundations of disability studies. Students turned in several small writing assignments, ultimately resulting in a final group paper of 5-7 pages.
A memoir helps readers to understand the lived experience of an individual with a disability. Memoirs are used widely in undergraduate education, including in abnormal psychology (Norcross, Sommer, & Clifford, 2001), mental health nursing (Lee Brien & McAllister, 2017), English (Brown, 2010), and the humanities (Kreiswirth, 1992). In the helping professions, the goal of using memoir is often to increase student empathy and improve practitioner preparation (Lee Brien & McAllister, 2017; Norcross et al., 2001). Instructors report that these readings are well-received, and students often report learning more from memoirs than they do from traditional textbooks (Banyard, 2000; Norcross et al., 2001). “Narrative medicine” has gained prominence, through which students develop the skills of close reading and writing as a vehicle for understanding patients as whole, complex persons, not diagnoses (Charon, 2001). Patient care is improved through pathography as students develop an appreciation for the importance of illness narratives, their meaning and purpose, and the ability to empathically listen in order to obtain them (Charon, 2001).
While the use of memoirs in academia is common, the process of using small, semester-long book clubs has less scholarship. However, there is a model for this put forth for elementary school students by Raphael and McMahon (1994). Raphael and McMahon’s model is grounded in the theory that the acquisition of literacy is a social process best done with worthy texts, peers, and regular discussions as opposed to emphasizing literacy as a skill that can be acquired by reading isolated paragraphs. At any level, including undergraduate education, learning to read and write well requires continued reading, discussing, and writing about thought-provoking, worthy texts (Raphael, Florio-Ruane, & George, 2001). Indeed, Florio-Ruane and deTar (2001) did adapt the book club model to be used in graduate teacher education with autobiographies about culture as the focus, primarily to give teachers-in-training experience with a model of learning they could soon use in their teaching. Long-lasting book clubs are unique in their ability to develop learning communities, which are essentially peer-led (Raphael et al., 2001). Students’ passion for reading and writing is engaged through powerful texts, and writing is improved as they read works written by the author, their peers, and themselves (Raphael et al., 2001). However, in the above examples, the books (autobiographies or children’s books) are the sole media. In contrast, the assignment I teach requires the synthesis of two media: memoirs of illness and academic textbooks about illness and disability.
While there are several published papers about the use of memoirs in the teaching of psychology and medicine, few exist in disability studies. However, memoirs about the experience of disability have become increasingly common in the past thirty years. Couser (2009) terms this the “some body” phenomena: memoirs that are about the experience of living in a body that is considered by the general public to be atypical in some way. The proliferation of these memoirs is a part of the recontextualization of disability as a “normal” part of the human experience. Additionally, these memoirs offer an insider experience that promotes disability advocacy while influencing public perception of people with disabilities. They represent an incredibly rich and often untapped resource for college courses about disability studies.
The assignment shared here is a semester-long group assignment created for an introductory (100-level) course on disability and culture, which is offered by and required for majors in rehabilitation and human services. The course fulfills general studies requirements and is required for several majors; it is commonly composed of students from rehabilitation and human services, kinesiology, psychology, and early education. Typical enrollment in the course is 25-40. The multi-step, group nature of the project was designed with first-year students in mind, to scaffold their work and help them contextualize writing as it is done within my field, psychology, as well as most other health science fields: collaborative, over time, and through several discussions and revisions.
In week one of the semester, students are provided a list of memoirs about the experience of disability. The memoirs are chosen based on representation of diverse forms of disability, sufficient reflection and description to complete a textual analysis, and popularity and readability. I used the National Leadership Consortium on Developmental Disabilities’ Recommended Books about the Disability Experience as a starting place for selecting the possible titles (Weiss & Fong, n.d.). (See assignment below for a recent list of included memoirs.)
Students are given a list of seven possible memoirs and self-select into groups of five or six students each. The groups read the memoir in pre-designated chunks throughout the semester corresponding to their participation in four in-class book club meetings. On the date of the assigned book club meetings, each student submits a one-page summary with obvious detail to ensure they have read the required section (i.e., particular scenes or stories) and a personal reflection. Additionally, students come prepared to share a question that integrates the memoir with material from the course text. The students take notes about the discussion prompted from their question, which is then handed in for a grade. On these designated days, students break into their groups and each manage their own discussions. The goal is to have students discussing one-fourth of the book at a time, carefully analyzing connections between the memoir material and the academic material presented in class lectures and readings.
As the instructor, I float from group to group to facilitate and scaffold the discussions, focusing students on the synthesis of narrative with academic material. However, I am often just a participant, and I recognize that much of the most important work is done in my absence when students talk freely about their likes, dislikes, and authentic reactions to the material. These small group discussions are intended to allow each student more ownership and participation time in a small group (as opposed to a whole class discussion), creating shared experience among students which may allow them to discuss more challenging topics addressed in this class, like privilege and oppression.
At the end of the semester, the groups submit a final paper and complete an in-class final presentation on their memoir. The paper requires integration of the course text and lectures in order to contextualize the material presented in the memoir. Students provide textual evidence for their claims about the author’s message, model of disability used, impact of culture, and instances of prejudice and discrimination. The final paper outline directs students through pointed questions on topics of prejudice, discrimination, privilege, culture, and models of disability (see assignment, subtitle “The Questions”). In essence, the final paper requires students to synthesize the mini-analyses they have been doing less formally in their book club meetings all semester. The required content of the final presentation mirrors the paper content. This portion of the assignment has three goals: (1) to give students experience verbally expressing their ideas, (2) to encourage students to present the analysis of their memoir creatively (with videos, images), and (3) to expose students in the class to the diverse memoirs that were read that semester (outside of their own club).
The collaborative, multi-step process contextualizes writing as a constitutive process rather than an end-product. The cyclic process of reading and writing is meaningful in and of itself, as both contribute to understanding an individual’s lived experience. Practically, it also aims to reduce student stress, as the final paper is written and discussed throughout the course. At the time students write the final paper, they have already discussed the content of the paper in at least four hour-long group meetings, and each has four one-page papers of their own to pull from, decreasing the likelihood they are staring at a blank word document at writing time.
The assignment is based on my previous knowledge of the use of memoirs in abnormal psychology and other clinical health professions (Lee Brien & McAllister, 2017; Norcross et al., 2001) combined with the emphasis on memoirs of disability as a form of advocacy and highlighting the insider’s perspective (Couser, 2009). I knew that several upper-level courses on disability studies include memoirs as course assignments, and I knew that in many introductory courses, the academic theory and history is covered first with a personal example, like a memoir, introduced after the foundation is laid. This project is unique because the students complete both the groundwork in disability studies and the in-depth study of their memoir author simultaneously. One was not viewed as superior or primary for the other. Rather, both are important and necessary, as one cannot be fully understood without the other. The expository textbook could be viewed as pedantic, dry, and irrelevant without the memoir, and the understanding of the memoir itself could be thin and a-cultural, a-historical, and a-theoretical without the textbook.
I developed this assignment to require the students to read their memoir slowly and simultaneously read the textbook and participate in the course lectures. The slow reading of the memoir (as required for designed book club meeting days) stretched over one semester while simultaneously learning about disabilities allowed the students to apply concepts, bring material to life, and analyze the memoir in a way that quick reading for a deadline would not permit.
From a process perspective, the assignment requires students to understand how to work in a group and how to write collaboratively. Group work can be challenging for students. Therefore, I include a mini-lecture of how to work in a task group, based on group work theory (Corey, Corey, & Corey, 2016). I also include regular pointers and discussions about how to use their in-class book club time effectively. I provide in-class time to address often-neglected and critically important aspects of group work, such as working styles, deadlines, and division of work.
Once the groups were up and running, the book club days were received positively by students and me. I would often walk into class to find the students had no need for me to formally start class, as they were already in their groups discussing their books. At the beginning of the semester, I spent time redirecting conversations about their like or dislike of the writer to conversations about how the material learned in class applies to the text and vice-versa. The students improved throughout the semester in utilizing their book club time to analyze the memoir with their new knowledge of disability studies. For example, in the following student-written passage extracted from a final paper, the group integrates their knowledge of stage theory in response to the acquisition of a disability:
Stage theory in response to disability is the idea someone tries to integrate disability into their identity as they deal with grief. Smart (2016) lists the stages in response to disability as shock, defensive retreat, depression or mourning, personal questioning, and integration and acceptance (239). The Estreich’s [sic] experienced an initial shock at the onset of Laura’s diagnosis to Down syndrome. When a disability initially occurs, a period of shock will ensue among that person, their family, and their relatives. George and Theresa felt as though Laura and her disability was an inconvenience and often wondered why it had to happen to them.
This passage shows that students were able to bring the stage theory to life by applying it to the individual’s experience within their memoir. Additionally, as students learned about the models of disability, the memoir allowed them to analyze how these models served as a barrier or facilitator to living with a disability, as noted in the following student-written passage:
“The Estreich’s [sic] appeared to benefit from the biomedical model when they needed the information the most, but struggled with it when their daughter was viewed as a passive patient.”
These samples of student writing exemplify the analytical integration of the memoir and course text and lecture.
The group aspect of the assignment was well-received, except when it was not. Students did not struggle with the book club meetings or associated assignments, as those were written independently. The final paper and presentation were the project component that highlighted typical group struggles, like division of labor. There are six basic topics that must be covered in the final paper (See assignment, The Questions) and presentation, groups typically had five to six students, and therefore students typically divided up work along these lines. Despite typical group work challenges, the students near-universally reported enjoying reading their memoir. Qualitative comments on course evaluations consistently highlighted the book club project as a favorite part of the class, particularly the guided discussions with their peers and the content of the memoirs themselves. Students got into half-joking debates about who had the “best book,” and vehemently defended their own, in part because there are so many excellent disability memoirs to choose from and because the students self-selected into their book clubs, thus reading a memoir they had previous interest in. Several students reported it was the first book they fully read. Breakdown of the assignment into manageable chunks likely influenced manageable reading for reluctant readers. Additionally, investment in the authors of the memoirs was notably high. Virtually every group asked at some point, “What is s/he doing now?” or wanted more context to their story (e.g. other outside sources). This natural question and subsequent research to find answers was integrated into the students’ final presentations and papers.
The assignment has been used in two consecutive semesters thus far, and minor changes were made from one semester to the next based on student feedback and professor observations. New memoirs were included based on high student interest in particular topics and some memoirs were retired from my list because while excellent, they did not provide sufficient material for analysis. One revision to the assignment was an extensive peer evaluation form (see example in Supplementary Materials), which helped to assuage student concerns about peer contribution to group work. Additionally, my first time teaching the course, students utilized the first ten minutes of their book club discussion days to write out their summary. This took up valuable discussion time and gave students less experience with formal writing. Therefore, the next time I taught the course, students were required to pre-write these summaries and reflections and hand in them in at the start of the class period.
Depending upon one’s perspective, the primary limitation (or strength) of the project is the group work aspect. Inevitably, I end up spending time helping students negotiate conflicts with groupmates. As an instructor, framing my work with students about how to manage group work as a process goal of the course aids me in managing these challenges with patience and provides motivation for including mini-lectures and assigned readings relating to group work.
A limitation could be the problems with authenticity that are inherent in the memoir genre (Brown, 2010; Couser, 2009), notably brought to the public’s attention by James Frey’s (2003) A Million Little Pieces. Certain memoirs require more attention to this issue than others; for example, students struggle with this if reading Girl, Interrupted, as the author questions her diagnosis, treatment, and true mental illness and then relays without much fanfare a day when she started pulling her skin off and had to be sedated (Kaysen, 1993). The debate is introduced, discussed, and then moved past, as the purpose of the assignment is to give the students experience with someone else’s lived experience, which may be impacted by the author’s own memory, perspective, or in some cases, their ability to accurately recall what happened, based on the disability under study.
The assignment could be adapted to any subject where learning about an individual experience will bring to life theory and research (i.e. stories of education, stories of mental health). Personally, I would like to further refine the assignment by including more tailored readings on interpreting memoirs like those provided in Couser’s (2009) text on disability and life writing. Additionally, readings and mini-lectures on textual analysis may increase the students’ understanding of the assignment objectives. Another future direction I would like to pursue is to design a course that combines communications, English, and disability studies. English and communications could provide in-depth knowledge about memoirs, close reading, and textual and rhetorical analysis. In turn, memoirs about the disability experience could provide the content worthy of analysis and close-reading. For the time being, I have found that students are passionate about their memoirs, which translates into passion for the field of disability studies as well.
(To view a PDF facsimile of the original formatting of this assignment, return to this article’s homepage and locate the link to the “Assignment” PDF.)
Students will be presented with a list of potential memoirs (first person accounts) of living with disability. Students must self-select into groups of no more than seven students to participate in a semester long book club and final group project. Groups should be selected based on student interest in the particular memoirs available.
Book Club Components:
In-Class Book Club Meetings: There will be four in-class book club meetings to ensure the groups are reading the books throughout the semester, give students an opportunity to discuss the book and how it relates to class material presented on disability and culture, and begin preparing for their final presentation. The dates of the in-class book club meetings can be found in the course schedule. During book-club meetings, all students should bring their memoir to class for reference during class discussions.
Summary and Analyses (100 points): On the date of the book club meetings, class will start with group members handing in a one-page summary and analysis of their assigned reading. You should have read the 1st 1/4 of the book by Book Club Meeting 1, 2nd 1/4 by Book Club Meeting 2, 3rd ¼ by Book Club Meeting 3 and finished the book by Book Club Meeting 4. The papers should provide a basic summary (10 pts), obvious details from the section read (10 pts), and a personal reaction to what you have read (5 pts). Rubric Provided.
Book Club Discussion Sheets: (100 points): For each book club meeting, each student should prepare one question for discussion for the group. You should be prepared for class with a typed question at the top of sheet of paper. During “your question,” you should take notes on the group members’ responses. This will be handed in at the end of that class period and worth 25 points each. The question must include a tie-in to material learned during lectures or by reading the textbook. The questions should meet the following criteria: a thought-provoking question about the book (10 points), the question quotes or references a particular part of the book (5 points), and the question has a quote or specific reference to class or text material (10 points). Rubric Provided.
Final Group Presentation: 100 points: During the last week of class, each group will provide a presentation on their book (two per class period). The presentation must (at a minimum) answer the following five questions. A paper in APA format must be handed in (one per group) which also answers these five questions. You are encouraged to be as creative/expressive as you like with your presentation which should take about 20 minutes. You may utilize any technology you see fit and incorporate any props you like.
The Questions:
Provide a summary of the book, including main characters and main events.
What does the group believe the author is trying to tell people about his or her experience with disability? Analyze the author’s main message and integrate course material.
Think about the five models of disability covered in class: which model does the author seem to be using the most? Why do you think that? Argue how the models presented in class fit with examples from the book to support your idea. Are there any other characters (care providers, family members) who utilize an alternative model?
Analyze how culture impacts the experience of disability in the book.
Does anyone in the book experience prejudice/discrimination? How do they respond to it?
What is your personal reaction to the book? Do you think it was a good book to read in this class? How did it enhance your learning about the academic concepts presented in class (theories, models, definitions, etcetera)?
Possible Memoir List:
Estreich, G. (2013). The Shape of the Eye: A Memoir
Fadiman, A. (2012). The Spirit that Catches you and you Fall Down
Connoly, K.M. (2010). Double Take: A Memoir
Villasenor, V. (2005). Burro Genius: A Memoir Extreme Dyslexia
Robison, J. (2008). Look Me in the Eye: My Life with Asperger’s
Jamison, K. R. (1997). An Unquiet Mind: A Memoir of Moods and Madness
Kaysen, S. (1993). Girl, Interrupted
Banyard, V. L. (2000). Using first-person accounts to teach students about psychological disorders. Teaching of Psychology, 27(1), 40–43. http://doi.org/10.1207/S15328023TOP2701_9
Brown, M. (2010). The memoir as provocation: A case for "me studies" in undergraduate classes. College Literature, 37(3), 121–142.
Charon, R. (2001). Narrative medicine: A model for empathy, reflection, profession, and trust. JAMA, 286(15), 1897–1902. http://doi.org/doi:10.1001/jama.286.15.1897
Corey, M. S., Corey, G., & Corey, C. (2016). Groups: Process and practice (10th ed.). Boston, MA: Cengage Learning.
Couser, G. T. (2009). Signifying bodies: Disability in contemporary life writing. Ann Arbor, MI: University of Michigan Press.
Florio-Ruane, S., & DeTar, J. (2001). Teacher education and the cultural imagination: Autobiography, conversation, and narrative. Mahwah, NJ: Lawrence Erlbaum Associates.
Frey, J. (2003). A million little pieces. Port Angeles, WA: Anchor Books.
Kaysen, S. (1993). Girl, interrupted. Westminster, Maryland: Vintage.
Kreiswirth, M. (1992). Trusting the tale: The narrativist turn in the human sciences. New Literary History, 23(3), 629–657. http://doi.org/10.2307/469223
Lee Brien, D., & McAllister, M. (2017). Moving beyond routines in teaching and learning: Releasing the educative potential of published eating disorder memoirs. Issues in Mental Health Nursing, 38(5), 402–410.
Norcross, J. C., Sommer, R., & Clifford, J. S. (2001). Incorporating published autobiographies into the abnormal psychology course. Teaching of Psychology, 28(2), 125–128. http://doi.org/10.1207/S15328023TOP2802_13
Raphael, T. E., Florio-Ruane, S., & George, M. (2001). Book club "plus": A conceptual framework to organize literacy instruction. Language Arts, 79(2), 159–168.
Raphael, T. E., & McMahon, S. I. (1994). Book club: An alternative framework for reading instruction. The Reading Teacher, 48(2), 102–116. http://doi.org/10.1598/RT.48.2.1
Smart, J. (2016). Disability, society, and the individual. Austin, TX: PRO-ED.
Weiss, N., & Fong, L. (n.d.). Recommended books about the disability experience. Retrieved March 5, 2019, from http://www.nlcdd.org/resources-books-movies-disability.html