An Inclusion Book Club Supports Literacy and Communication
The ASHA LeaderLive Speech-Language PathologySeptember/October 2022
With support from the community and civic leaders, an SLP offers monthly gatherings for adults, some with complex communication profiles.
September 12, 2022
Sebastian, with support from his mother, participates in a pre-pandemic meeting of the iBookclub of Pasadena in a local library.
In the movie “Heidi,” which I was watching with Ann Marie, a 32-year-old with Rett syndrome, Heidi meets Klara and Peter, all of whom become readers. Together they unlock a passion for books second only to their passion for people. I am Ann Marie’s speech-language pathologist, and as we watched the movie, I noticed she was transfixed by the scenes of the characters learning to read.
Ann Marie uses an assistive speech-generating device (SGD) to convey many of her thoughts, feelings, and experiences, as do many people with conditions that affect their ability to speak. But here, her intent interest in the story—communicated by her eye gaze and by smiling and looking at her communication partner—inspired me to form a book club for people who communicate with SGDs.
Organization
Ann Marie, her mother, and I formed an organizing committee in 2017 to turn the idea into reality. I shared the concept with the Accessibility and Disability Commission of the Pasadena City Council, demonstrating that communication access in the community is as important as physical accessibility. The commissioners agreed to create a logo, recruit participants from the public schools (people with complex communication profiles, other students, caregivers, and parents), and compose a newsletter for participants. Another committee member volunteered to organize and operate technology for the meetings, held at a branch of the Pasadena Public Library. The head librarian arranged to provide accessible meeting space, library resources, technology, and personnel.
On March 6, 2018, we were ready for our first iBookclub meeting (the “i” means inclusive, individual, independent, internet-accessible, and personally involved). Other SLPs and I had recruited some participants, and others were referred by Easterseals and friends who knew about the group. There were 12 participants—a diverse group of readers from four different cultures and language groups—with a variety of diagnoses, including Rett syndrome, cerebral palsy, Down syndrome, motor and cognitive differences, and autism.
Meetings and connecting
Our first two years, we met monthly in person at the library. Since March 2020, we have met virtually. The meetings last about an hour and a half. After setting up and waiting for participants to arrive, we spend 10 minutes introducing ourselves, reviewing the communication rules of the iBookclub, and watching a short video related to the meeting’s topic. For the bulk of most meetings—about 45 minutes—we discuss readings and then summarize contributions. In the last 20 minutes we celebrate birthdays, enjoy refreshments, and preview the next date and topic.
Meeting topics are generated by the participants and range from sports to science to history, based on participants’ life and literacy experiences. We might include books by people with a communication disorder (“The Reason I Jump,” by Naoki Higashida), or examine poetry, art, music, print books, magazines, self-drawn designs, and readings from Bookshare, an ebook library that allows users to customize their reading experience). Participants choose their own books, magazines, and newspapers on the selected topic.
Some meetings even include field trips. To support our astronomy topic, for example, we visited the headquarters of the Thirty Meter Telescope Project, with a presentation and guided tour from lead astronomers.
At one meeting, Ann Marie shared her report about “Heidi” by focusing her eyes on the illustrations and text her mother had uploaded to her SGD. Sarah, another participant, shared her delight in reading the adventures of Percy Jackson. Sebastian used two switches on his wheelchair headrest to select letters on his iPad to communicate about the celebrated Los Angeles Dodgers and the contentious building of the 1960s sports stadium. Elizabeth announced the birthdays for that month written on her calendar. Luis, Gabriela, and Adriana listened attentively and eagerly checked out materials they found interesting.
Qualitative observations
Lesley Mayne, associate professor of communication sciences and disorders at the University of Wisconsin–Eau Claire, conducted a qualitative study in 2020 of the iBookclub’s structure, order, and patterns, and presented the findings at the 2021 ASHA Convention. She observed and interviewed book club parents, caregivers, and volunteer leaders. Three key themes emerged:
Participation includes not only socialization, but also the critical elements of intellectual stimulation, emotional satisfaction, fulfilled communication needs, use of socially appropriate vocabulary and sentence structure, and sharing of information (see sources).
Topics, rather than individual books, drive engagement.
The library has played a key role in the iBookclub’s success, allowing it to serve the entire community.
One participant’s mother, a school principal, reported that since her adult daughter began participating in the iBookclub, she enters conversations and responds appropriately; says longer and more complete sentences; and uses new words.
In the study, a volunteer leader (an occupational therapist on the Accessibility and Disability Commission) said, “It was amazing to see the sense of humor, reading, and assimilation of information.”
The participants in this free civic service communicate and intellectually engage with their peers. They join in literacy and community experiences that connect them to each other as responsible communication partners who share important information, feelings, and opinions about relevant topics.
Sharon Rogers, PhD, CCC-SLP (she/her/hers), works in Pasadena, California. She has been on the faculty of California State University Fullerton, Claremont Graduate University, and Pacific Oaks College; served as a school district consultant; and taught children with complex communication profiles. She is an affiliate of ASHA Special Interest Group 12, Augmentative and Alternative Communication. smrsp@aol.com
Lesley Mayne, PhD, CCC-SLP (she/her/hers), associate professor in the communication sciences and disorders program at the University of Wisconsin–Eau Claire, also contributed to this article. She is an affiliate of ASHA Special Interest Group 12. maynele@uwec.edu
Source
Mayne, L., & Rogers, S. (2020). Augmentative and assistive communication with children: A protocol and intervention plan to support children with complex communication profiles. London, UK: Routledge.