The Collection of Materials
to Create Disability Awareness, Understanding and Empathy
amongst Elementary Students:
CLMC.DIVERSDISABILITY
Rational and Social Context
As disability is the state of health anyone can encounter, by birth, diseases, accidents, or aging, people with disabilities make a big part of society anywhere in the world. WHO’s latest World Report on Disability (2011) estimated that there were, globally, 95 million (5.1%) disabled children (0–14 years) and around 785 million (15.6%) disabled adults (15 years up) at the time and increasing. In Thailand, 2,058,082 (3.09% of the population) people have registered for disability cards, of which 153,517 were young people (0-21 years) (MSDHS, 2020). Despite the big numbers, disabled people have suffered unnecessary barriers from prejudice and negligence, depriving them of equal access to education, health, employment, and better life-quality (WHO, 2011).
Schools are where prejudice and disabling barriers early appear. Disabled primary students were reported to risk being bullied more than their typically developing classmates (Carter&Spencer, 2006; Rose, et al. 2011; Blake et al., 2012). In Thailand, more than 400 thousand disabled children are studying in inclusive schools (The Ministry of Education, 2020) and are prone to be a target of bullying (Butchon et al, 2019) and prejudice from school executives, teachers, and parents who see them as a burden to the class educational efficiency (Saengsawang et al, 2019).
Our declaration of intention on Instagram.
Nussbaum (2003) theorizes that as most of the population rarely contact with marginal people and see the world from their viewpoints, social norms that oppose the minorities hardly change. Diverse literature, she suggests, can present multicultural realities, inspire intercultural comparisons, and instigate the improvement of the present norms. Similarly, representations of disabilities within children’s literature can provide intercultural perspectives (Cotton&Dali, 2015), raise awareness of individual differences and promote acceptance of disabled children amongst their peers (Matthews, 2009; Persiani-Becker, 2011) which supports an unbiased learning environment (Gopalakrishnan&Persiani-Becker, 2011). Seeing themselves represented in texts and other media, disabled children can ‘find themselves [and/or] appropriate role models’ (Rieger&McGrail, 2015), which strengthens their identity and sense of belonging. The texts with age-related content and inclusive formats that allow differently-abled students to interact and share their experience with others also help create a class where literacy and enthusiasm for learning are equally promoted (Boiesen, 2004; Valente, 2015).
Notwithstanding the above mentioned, the representation of disabilities in children’s literature has been underrepresented (Wyatt, 2010; CCBC, 2020), stereotypically and/or over-optimistically misrepresented (Emmerson et al, 2014; Dunn, 2015), lacking multicultural aspects e.g. races, families, and economic status (Golos&Moses, 2011; Golos et al., 2012; Emmerson et al, 2014; Webb, 2017) and inclusive formats (Boiesen, 2004). The literature also lacks creators with disabilities, leading to the questions of authenticity (Golos&Moses, 2011) and the sincerity for social inclusion. The curation of elementary-class materials with diverse, authentic representations of disabilities, thus, necessary to facilitate lessons that tackle prejudice, empower disabled children, and create an inclusive learning environment.
Theoretical Framework
To set up the area of our corpus, we firstly investigated the definition of disability. Throughout history, disability has been defined in two lights. A medical model sees a limited body as the person’s core identity that must be fixed to fit in the society (Linton, 2005). Contrarily, a social model tackles “representational and institutional structures” in society that construct disability (Linton, 2005:518). Seeing disability as negative interactions between individuals with a health condition and personal and environmental factors, WHO (2011) recognizes both medical and social barriers that vary in different contexts. However, it still fails to acknowledge positive interactions that may arise from disability.
According to Nussbaum (2003), a true understanding of diversity requires intercultural-approached learning, which is to compare, discuss, and criticize the positive and negative aspects of different lifestyles. To give well-rounded representations of disability and inspire intercultural comparisons in primary classes, we set up four criteria for our selection.
Firstly, our corpus must consist of both positive and negative portrayals of disability. The positive representations aim to empower disabled children by emphasizing success rather than/or in complementing to failure (Blaska, 2003) and appropriately using humor that allows them to laugh about their predicament with their peers, thus, promotes inclusive behaviors in class (Rieger&Mcgrail, 2015). Meanwhile, the negative portrayals address the social barriers against the disabled and promote social justice in class (Rieger&Mcgrail, 2015).
Secondly, our corpus should reflect the diverse realities of disability through content and form. For the content, from the medical aspect, we aimed to cover four main areas suggested by ICF-International Classification of Functioning, Disability and Health (WHO, 2001): Body Functions, Body Structures, Activities and Participation (e.g., self-care, learning, and communicating), and Environmental Factors (e.g., technological aids, infrastructures, and human supports). These classifications allowed our corpus to include the portrayals of people with all kinds of chronic health conditions. For the social aspect, social factors, i.e., race, age, gender, and socio-economic status, which diversify the experiences of disabled people (WHO, 2011) are taken into measure. Materials of any topics and genre that feature disability are also included to give children access to various aspects of disabled people’s lives.
Moreover, as the intercultural approach requires different cultural groups to share experiences, critically learn from each other, and develop commitments to create a more equitable world (Short, 2011), materials with inclusive forms for differently-abled children were also selected. According to Boiesens (2004), children with some disabilities need literature with special materials or universal modes of communication (e.g., Braille language, tactile graphics, audible texts, and sign language) to engage them in reading and learning. For example, blind children access literacy better through audible and tactile materials, while non-hearing children may prefer visual materials, like multimedia items and wordless books, over text-based ones. Various forms of literature can create a more inclusive lesson and provide children the ‘window’ to diverse modes of communication and learning methods in disability communities.
Thirdly, as not all reading mediators have firsthand experience with disabled people, realistic representations in classroom materials are crucial to prevent misunderstandings about disability. According to Gopalakrishnan and Persiani-Becker (2011), cultural authenticity is achieved when an author’s perspectives are close to those of readers from inside the group. For outsiders, a text will look authentic when 1. information from other sources align with the text’s ‘reality’, and 2. the text’s authors and production have enough credibility to create a truthful work (Lierop-Debrauwer 2020, p. 8). In this light, we explored online for insiders’ voices, authors/illustrators’ biographies, and each item’s production process to determine its authenticity.
Fourthly, to determine which materials are engaging for abled and disabled primary students (7-12 years), we relied on reader responses and our experience with primary students.
Application
The selected materials are aimed to be mediated and used in classroom and school libraries for reading activities and project resources. I also recommend Thai librarians in public libraries to use them as a starting point for disability-awareness activities, which we are severely lacking. Publishers, translators, and writers are welcomed to study the corpus for future translation or use it as a guideline to produce similar materials in Thailand.
Methodology and The Curation
Our methodology for the curation has three steps. Firstly, we agreed to choose items that could be fully accessed by at least one of us and fit all four criteria. We searched for materials (in original languages and translation) in the languages we know (English, Thai, Chinese, and Georgian) or could acquire full translation (Japanese). Our recommended items, their genre, disability, and cultural representation, synopsis, accessible link, and our rationale were put in a shared excel sheet.
My primary sources of materials were mainly recent catalogs from publishing houses (in Thailand, the U.S., and the U.K.) and book/film recommendations by disabled people, parents of disabled children, and organizations and awards that promoted disability content. I picked Emmanuel’s Dream (Thompson&Qualls, 2015) and The Deaf Musicians (Seeger&Jacob, 2006) from Schneider Family Book Award for children’s books that exceptionally portrayed disability (ALA, 2020); Papu e Filo (Bridda, 2016) and Not So Different (Burcaw, 2017) from IBBY 2019 Catalogue of ‘Outstanding Books for Young People with Disabilities’ (SOBYPD); a short film, Ian (Gorali&Campanella, 2018) from ReelAbilities Film Festival, which promoted appreciation of disabled people’s lives (Reelabilities, 2020). I also explored popular SNS platforms, e.g., Youtube and Instagram, for media channels aimed at disabled children (e.g. Statewide Outreach Center at Texas School for the Deaf), and/or hosted by disabled people (e.g., Tommy Edison Experience) for diverse, authentic representations.
The cover of IBBY 2019 Catalogue
Secondly, we cross-checked each item’s qualification and listed up the qualified items. To check the texts’ authenticity, I investigated their creators' relations to disabled people and their research to portray disability. I compared the text with medical information and the experience of people with the mentioned disabilities. To check the authenticity of cultural representation, we searched whether the texts had received local awards or recommendations by people of that culture. Meanwhile, I explored local news to seek any disputes within that culture over the mentioned practices. This method sifted out King for a Day (Kahn&Kröner, 2013) because we found that Basant, the flying kite festival, celebrated in the story, has been banned from Pakistan since 2005 as the kites injured many birds and people. Although a disabled boy winning the kite competition can empower disabled readers, such portrayal can be criticized for cultural appropriation and insensitivity towards the victims of Basant.
The cover of King for a Day (Kahn&Kröner, 2013)
Finally, we compared similar items in the qualified list to eliminate the weaker options. For example, Proud to Be Deaf (Beese et al, 2017) was chosen over Hands and Hearts (Napoli&Bates 2014) because it told the experience of real deaf children, covered more aspects of Deaf culture, and added illustrated non-fiction genre into the corpus. After eliminating redundancies, we discussed the gaps in representations and searched for more items to fill in the voids (returning to step 1). For instance, the portrayal of disability in poverty was fulfilled by Emmanuel’s Dream (Thompson&Qualls, 2015), a story about a poor, one-legged boy who became a bicycler in Paralympic games. Disabilities in diverse age groups, infants and adults, are shown respectively in Lullaby for Lily (Lortkipanidze&Kirtadze, 2019) and The Deaf Musicians (Seeger&Jacob, 2006). Two short films, Ian (Gorali&Campanella, 2018) and The Present (Frey, 2014) were added for more variety in media forms and aspects of disabled children’s relationships (with abled playmates and with a pet).
Our finalised Instagram Collection (Last accessed: 6/9/2022)
As a result, we curated items from 13 countries, covering disability with ICF’s four areas of disabling factors (WHO, 2001), diverse social backgrounds, presented in seven languages (including sign and Braille languages), and in various formats (see Appendix). To help mediators find items suitable for their usages, we categorized the corpus into three groups based on formats with similar affordances, i.e. Picturebooks, Novels and Non-fictions, and Special Formats. The catalog on Instagram (www.instagram.com/clmc.diversedisability/) shows each text’s country of origin, format, synopsis, strengths, how it matches our criteria, and visual descriptions for the audience with visual impairment (see Fig.1).
QR code to the Instagram: clmc.diversedisability
Challenges and Improvement
Our curation encountered four main challenges which affected, if not limited, us as the corpus gatekeepers. Firstly, the inaccessibility to texts and information about them had many items eliminated. Books, such as Wink (Harrell, 2020) and Until the Closed-eyed Child Grows (Kittisiripan, 2016), the autobiographies of disabled children lacked accessible e-book versions. The lack of reader responses, authors’ biographies, and research methods made some items crossed out. As we resorted to the award committees’ credibility to determine the texts’ authenticity, we found that awards for children’s books with disability representations were also scarce, limited only in the U.S. --i.e., Schneider Family Book Award and Dolly Gray Children’s Literature Award. This finding reveals our countries’ need for more e-book productions, book/media reviews by disabled children, and awards for children’s books about disability (with children’s votes) to promote good-quality, authentic materials.
The cover of จนกว่า เด็กปิดตา จะโต
Until the Closed-eyed Child Grows (Kittisiripan, 2016)
Secondly, language barrier obstructed us from analyzing all the options deeply. Although we prepared text summaries and discussed all recommended items, without reading the whole text, some details could be lost from consideration. For example, I could not decide whether or not the closure of a Georgian classic novel, I See the Sun (Dumbadze, 1962), in which the blind protagonist still hoped to become sighted at the end, insinuated a negative portrayal that the disabled should be fixed (Linton, 2005). In future curation, enough time should be provided for every chapter of the selected novels/non-fiction to be summarized and translated into the language all members understand to avoid a selection that is based on trust and not thorough discussion.
Thirdly, the discrepancies between scholar recommendation and reader responses revealed the complexity in determining the items’ authenticity. Featuring in IBBY’s 2011 SOBYPD collection, The Black Books of Colors (Cottin&Faría, 2006) is supposed to have authentic content and format. However, some readers commented that its Braille language was too shallow for the blind. This alerted me to check the methodology of all text curations and always cross-check them with responses from other readers. The future curation should prepare time and a checklist to systematically investigate discrepancies within and around each text. In the end, we still selected the book with the hope that its aesthetic combination of form and content will instigate children’s curiosity for the blind’s perception (e.g. of colors) and communication. As criticism of socio-cultural inequities is part of the intercultural curriculum (Shorts, 2009), mediators can use the book’s problematic format to address problems about the blind’s inequal access to books and inspire social actions in creating inclusive designs (Gopalakrishnan&Persiani-Becker, 2011)
Fourthly, we found that censorship was hard to avoid when we aimed for international communities with different concepts of age-appropriateness. Despite the notion that shielding children from disturbance excludes them from discussing topics that matter to their lives (Gubar, 2013), Speechless (2016-2019), a TV series about a disabled teen, was still eliminated as we and its audience reviews disagreed on its age-rating due to inexplicit sex scenes. Although it can provide children the opportunity to value and discuss diverse cultures, e.g., sexuality and taboos, as part of the intercultural curriculum (Shorts, 2009), the disagreement over age appropriateness significantly discouraged parents and us to introduce it to primary children. The same goes for Qigaijianzai (Lai, 1991), an autobiography of a beggar child with disabled parents. Although the book’s negativity was realistic and gave diverse disability representation, we were reluctant about its age appropriateness and possibility to create a negative attachment to disabled people. If these books will be added in future curation, a mediator’s guidance should be provided to help teachers address sensitive topics in class.
The cover of Qigaijianzai (Lai, 1991).
Conclusion
Like any culture, disability has nuances and should never be told from a single viewpoint (Gopalakrishnan&Persiani-Becker, 2011). To break through prejudices and prevent new misconceptions, we tried to bring in multiple viewpoints with serious consideration of their authenticity and age appropriateness. The challenges we encountered revealed the gaps in reading promotions and reader participation in our countries. The constraints in our gatekeeping process (i.e. time limit, information inaccessibility and discrepancies, language barrier, and cultural disagreements) pressed the need for a more systematic framework for future curation. To include more aspects to the corpus, especially those with sensitive content, gatekeepers can develop and provide guidance for negative-effect preventions together with future collections.
Reference
Primary Texts
Beese, N. (2017). Proud to be Deaf. London: Hachette Children's Group.
Bridda, R. (2010). Papu e Filo / Papu and Filo / text and images by Roberta Bridda.
Burcaw, S., & Carr, M. (2017). Not so different: what you really want to ask about having a disability. New York : Roaring Brook Press.
Cottin, M., Faría, R., & Amado, E. (2018). The black book of colors. London: Walker Books.
Dumbadze, N. (1962) I See the Sun (მე ვხედავ მზეს). Moscow: Progress Publishers.
Edison, T. (2012-now) Tommy Edison Experience [Video]. YouTube. https://www.youtube.com/channel/UCld5SlwHrXgAYRE83WJOPCw
Haddon, M. (2003). The curious incident of the dog in the night-time. New York, Vintage Contemporaries.
Harrell, R. (2021). WINK. London: Puffin Books.
Ian (2018) [Online]. Directed by Gastón Gorali and Juan José Campanella. Agentina: Mundoloco CGI. Available from: https://www.youtube.com/watch?v=Hz_d-cikWmI (Last accessed: 18 November 2020).
Kahn, R. and Kröner, C. (2013) King for a Day. Newyork: Lee & Low Books, Incorporated.
Kittisiripan, (2016) Until the Closed-eyed Child Grows (จนกว่า เด็กปิดตา จะโต). Bangkok: Butterfly Publishing.
Lai (1991) Qigaijianzai. Taipei: Ping An Wen Hua
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Lortkipanidze, A. &Kirtadze, S. (2019) Lullaby for Lily (იავნანა ლილისთვის). Tbilisi: Palitra L Publishing.
Napoli, D. J., & Bates, A. J. (2014). Hands & hearts. New York: Abrams Books for Young Readers.
Poynter, R. (2014-now) Rikki Poynter [Video]. YouTube. https://www.youtube.com/user/rikkipoynter
Rocky Mountain Deaf School (RMDSCO) (2012-now) ASL Storytelling, [Video]. YouTube. https://www.youtube.com/channel/UC7clP2oTJIzKjNTba7APp2A
Rudolph, S., Royer, D., Zivion, J., Coman, D. C., & Braaten, E. (2015). All my stripes: a story for children with autism. Kentucky: Magination Press, American Psychological Association
Seeger, P., Jacobs, P. D., & Christie, R. G. (2007). The deaf musicians. Princeton, N.J., Recording for the Blind & Dyslexic.
Speechless. (2016-2019). American Broadcasting Company.
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Yeboah, E. O., Thompson, L. A., & Qualls, S. (2015). Emmanuel's dream: the true story of Emmanuel Ofosu Yeboah. New York : Schwartz & Wade Books.
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Emmerson, J., Fu, Q., Lendsay, A. and Brenna, B. (2014) ‘Picture book characters with disabilities: patterns and trends in a context of radical change’. Bookbird: A Journal of International Children’s Literature, 52(4): 12-22.
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Valente, D. (2015) ‘Haptic Books for Blind Children: a Design for All Approach’, 11th European Academy of Design Conference. University of Paris, 22-24 April. Paris Descartes University: Institute of Psychology.
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