VA-LEND Book Adventure
February 27, 2012
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Public discussion of Ian Brown's The Boy in the Moon (NY, ST. Martin's Press, 2009) and individual faculty awareness of the University's undergraduate summer reading program led us to pilot a faculty-trainee shared reading discussion experience in 2011. This paper outlines our process so that other LEND programs might consider a similar experience.
Briefly, The Boy in the Moon is a father's journey to understand his extraordinary son's cardiofacialcutaneous syndrome, a genetic condition, associated in Walker with global delays, absent speech, and a tendency to constantly hit himself. The father asks "What is the value of life lived in the twilight, and often in pain? What is the cost of his life to those around him?" The father, a Canadian journalist, works to understand the medical science, the impact on families, and the meaning of life, especially his family's, through his reporting and reflections.
The Virginia UCEDD and LEND directors both had personal enthusiasm for the book and introduced the potential project for discussion at a faculty meeting two months before distributing the book to faculty and trainees. Faculty meeting discussion centered on the particular book (293 pages), the best format for discussion, the length of time to be given to complete the book, and potential benefits and challenges to the project. The project had goals in common with other shared book reading programs to model intellectual engagement and develop a sense of community with a book that stirred discussion of questions of meaning and value with enjoyment. Books were distributed to all faculty and trainees in July and August 2011 which launched our "Book Adventure." Several of the trainees expressed particular pleasure in receiving a book.
Discussion topics were developed and shared with the faculty (attached). Topics included an exploration of family issues, life course elements, and societal expectations and supports. In the fall, discussion groups were organized and scheduled. The meetings were of 1-2 hours in length and were led by 2 faculty members. Scheduling of the 5 groups (average size 5 members) proved the most difficult aspect of the project given an already time-consuming LEND curriculum. An informal evaluation indicated the following. Ninety percent would like to participate in the Book Adventure again, with 10% suggesting a shorter book, such as Angel Unaware. Half of the respondents suggested using the same book for next year, with the other half suggesting a different book. On the strengths of the Book Adventure, respondents noted the value of having a discussion outside the classroom, the importance of hearing other viewpoints, and sharing ideas with different disciplines. In addition it was recognized that the book and discussion reinforced the philosophy of family-centered care.
When asked for advised improvements, respondents suggested conducting the Book Adventure earlier in the year, utilizing a more "positive" book or one incorporating insights from various members of a family. One respondent felt that the "extreme case" depicted in The Boy in the Moon was not the most viable of teaching tools.
Having learned from this experience, the Virginia LEND faculty and trainees are actively planning for another Book Adventure in the 2012-2013 academic year.
Discussion Questions for The Boy in the Moon by Ian Brown
Key terms - acceptance, disabilities, genetics, responsibilities, syndrome, value and meaning of a life
Themes
- biographic presentation of issues in society and medicine
- changing societal expectations and supports
- ethics of care, family life
- searching for meaning from different perspectives
1. How would you describe each of the main family members' and caregivers' point of view regarding disabilities?
2. What was the most vivid and memorable vignette in the book for you and why?
3. What were the important elements of the parents' decision to move Walker to the group home?
4. What factors, including social determinants, influence the relationships Ian Brown has with different health professionals and interventionists?
5. How did Walker's chronological age and developmental age impact his parents' feelings and attitudes about him? What were significant turning points and trajectories for Walker and his family?
6. What environmental factors influenced Walker's development?
7. What is the relationship of Walker's genetic diagnosis, cardiofaciocutaneous syndrome, to his life?
8. How has Walker's story influenced your thinking about how to respond to children with disabilities and their families?
9. How has Walker's story influenced your thinking about fairness and social justice?
10. Will you share this book with anyone? Why or why not?
11. Suggest another question for group discussion.
