Abstract
Children with severe multiple disabilities face numerous possibilities for enjoying music and participating in performance activities; however, the research practice for realizing these possibilities involves various difficulties. To understand the disabilities of children and their engagement with music, awareness of one’s perception of disability is necessary for each practitioner–researcher. The researchers of the current study reflected on their personal views about disability and life histories and described and analyzed them through collaborative autoethnography (CAE). The study was conducted through the practice of combining electronic music equipment and traditional instruments as a music education project for children with severe multiple disabilities. The results demonstrated that the perceptions of the researchers about disability and their life histories interacted with and transformed their research practice. Additionally, the study highlighted how endeavors in CAE encouraged dialogue among researchers and deepened mutual understanding. The suggestions for researchers of music education practice with children with disabilities include analysis of disability from the first-person perspective and sharing of views among co-researchers.
Keywords
Introduction
Music transcends diversity, resonates with the body and mind, and connects people. Even children with severe multiple disabilities, who experience difficulty in communicating with others, frequently display interest in music and musical instruments (McFerran & Shoemark, 2013). However, participating in performance activities is frequently difficult for them. Based on observations of children with severe multiple disabilities in music therapy sessions, Perry (2003) identified communication problems. These included difficulties in using objects as a focus of shared attention, severely constrained means of interaction, difficulty in maintaining an appropriate level of arousal, and lack of interest in interaction with others or external objects and environments.
Therefore, the current study has been developing electronic music devices that are easy for children with severe multiple disabilities to operate and promoting practices that aim to provide performance experiences using traditional instruments and dance/movement (Nakanishi et al., 2023).
However, through a number of trials and errors, the researchers were confronted with new questions: what is music education and what is disability? To address these questions, this study focused on our view of disability.
The term severe multiple disabilities is used in Japan in the field of education. It is a concept that overlaps with profound motor and intellectual disability in the medical and welfare fields. Although no clear legal definition exists in Japan, according to the 1975 Ministry of Education report, persons with severe multiple disabilities include not only those with two or more disabilities, such as visual impairment, hearing impairment, intellectual disability, physical disability, and infirmity, but also those with extremely severe disabilities in terms of developmental and behavioral aspects. Since then, the number of children with extremely severe disabilities who require daily medical care has increased, and the concept of severe multiple disabilities has expanded. Based on the current situation, Takahashi (2016) defines children with severe multiple disabilities as “children who have two or more disabilities in language, movement, cognition, and social skills, have difficulty communicating verbally, require constant assistance (including medical care) in daily life from physical and behavioral perspectives, and may experience barriers in society.” This study uses this definition.
Overview of research on the views of practitioners and researchers about disability
Stereotypes, prejudice, and discrimination
The attitude of people without disabilities toward people with disabilities is two-sided and value-oriented (Kurita & Kusumi, 2012). Attitudes can be grouped into stereotypes (cognitive), prejudice (emotional), and discrimination (behavioral aspect). Stereotypes are images of social groups, and scholars demonstrate that healthy people typically hold negative (low) ability and positive (warmhearted) personality stereotypes toward people with disabilities (Kurita & Kusumi, 2012). These double-sided stereotypes can be a factor in the continued proliferation of discrimination and prejudice (Fiske et al., 2002). In addition, the concept of ableism in disability studies indicates the existence of persistent prejudice in less conventional and visible forms such as symbolic ableism, classical prejudice, and aversive ableism.
Thus, attitudes toward those with disabilities reflect the complex psychology of individuals without disabilities. For better support, it is necessary to clarify supporters’ perceptions of disability and their views of disability.
Views of practitioners and researchers about disability
Every person has a limitation, but because individuals without disabilities are in the majority in society, they can ignore their limitations and, without acknowledging them, focus on the problems of others and justify that they have no disability (Kurita, 2018). The group that is most likely to ignore their inability may be academics. In a book entitled Academic Ableism, Dolmage (2017) highlights that stigma has long been the antithesis of institutions of higher education and that any hint of intellectual, mental, or physical vulnerability has been stigmatized. If this attitude persists in institutions of higher education, then individual researchers who study and work in these institutions are likely to internalize it. As Kurita (2020) emphasizes, the research challenge involves rethinking the third-person nature of researchers, which is the basic attitude of conventional psychological research, and confronting prejudice and discrimination among researchers.
Even in the field of music education, research that examined the views of practitioners and researchers about disability is insufficient. Notably, although music education emphasizes diversity and inclusion, the discussions frequently omit disability (Laes & Westerlund, 2018). In addition, research on music education rarely discusses the social models of disability (Bell, 2020). However, various practices target inclusion, such as universal design learning and hacking, and researchers in various music-related fields endeavor to adapt instruments for people with disabilities (Bell, 2020).
Views of disability in the Japanese society
This study was conducted in Japan, and all researchers are Japanese. As cultural background significantly influences one’s views of disability, examining the characteristics of Japanese society is necessary.
Following the adoption of the United Nations in 2006, Japan ratified the Convention on the Rights of Persons with Disabilities after 8 years. Until its ratification (and currently), the social issue of the realization of reasonable accommodation remained in the foreground. In this context, scholars highlighted that improving the attitudes of individuals is more difficult than improving buildings and systems (Cabinet Office, 2008). Especially with regard to severe multiple disabilities, studies on reasonable accommodation (Takahashi, 2016) are few, and social interest is undeniably low. Japan is a highly homogeneous society, and a strong tendency exists to be unaware of prejudice and discrimination, which are not limited to disability (Karasawa, 2018). In addition, in Japan, the Buddhist concept of retributive justice, in which “bad things happen as punishment for what we did in the past,” continues (Watanabe, 1990). Therefore, a common belief is that having a disability is one’s responsibility (Kurita, 2018). Consequently, discussing and perceiving discrimination and prejudice against people with disabilities are difficult initiatives within the Japanese society.
In addition, curricula and systems based on the pedagogical regimes of giftedness, ranking, and competition, which originated in the west and permeated much of East Asia, especially for students with disabilities, omit instead of provide music (Lubet, 2009). In other words, the traditional Buddhist view of life in Japan as cause and effect is deeply rooted, and western-derived ability-oriented educational models are imported. These factors may underlie the difficulty in understanding the model of disability and changing teaching methods in music education.
Practical issues surrounding the practices of this research team
Progress of practical research
For approximately 4 years, this research team has been developing electronic music devices and conducting workshops and other practical events that combine these devices with violin playing. Table 1 lists the events held, the participants, the devices used and educational outcomes. All the devices were pushbuttons that would play a musical phrase.
List of major events.
Notice that participants with severe and multiple disabilities gradually became able to participate in musical activities as we added big buttons, MIDI signals, and error-free Anytime button. As a result, the practitioner-researcher(s) were able to provide music education opportunities for full participation of students with disabilities in music education.
Need to incorporate first-person research
However, in many situations parents or instructors assisted children to do so, and it was often unclear whether or not the child could understand the operation and perform by themself. We were confronted with the questions posed in the Introduction. To examine these issues, we perceived that portraying the perception of researchers about disability is necessary in addition to their life history as a background to the first-person perspective.
Among several excellent first-person research methods, this study uses the collaborative autoethnography (CAE) framework. Autoethnography is a method in which researchers consider themselves as the object of the study and express their subjective experiences while examining them in an autoregressive manner (Imoto, 2013). Specifically, CAE is a method in which a group of researchers pool “their stories to find some commonalities and differences” then wrestle “with these stories to discover the meanings of the stories in relation to their sociocultural contexts” (Chang et al., 2013, p. 17).
As autoethnography focuses on the personal work and life of researchers, many papers present the description and analysis of researchers in relation to their own research process. Smith (2013a) compiled a book of the autoethnography of educators. The author works with people with disabilities and their families to find new meaning based on his experiences from the perspective of both sides. Furthermore, he states that autoethnography offers educators the opportunity to create a recursive teaching method (Smith, 2013b).
Objective of this study
This study enables the researchers to recall their involvement with children with severe multiple disabilities in their music education research practice to express their sensations, feelings, and thoughts and personal and professional views about disability as reflected by these emotions and their life histories as a background. Toward this end, the study employs first-person narratives, which are analyzed and discussed among members of the research team.
The research questions for this study are as follows:
RQ1: How do the views of disability and life histories of the researchers influence their research practice with children with severe multiple disabilities?
RQ2: How do their views of disability change as a result of their research practice?
RQ3: How can dialogue and mutual understanding among researchers be deepened by co-creating their CAE?
Methods
Participants/researchers
The participants are the four co-authors of this paper. They are team members of the team for a practical research project on music education for children with severe multiple disabilities, which started in 2019. All co-authors are university faculty members aged in their 40s to 60s. MY is female, and the three other authors are male.
TA, who specializes in music education and has organized workshops and endeavored to interact with children, emphasizes improvisational collaboration using the violin. YN, who specializes in information education, is in charge of developing electronic music equipment. SO, who specializes in special needs education, is in charge of advising on practices and recording and analyzing practices. He is responsible for proposing realistic practices based on his understanding of the disabilities of children. MY, who specializes in clinical psychology, provides suggestions and advice on practices from the perspective of dance/movement therapy.
Data collection procedures
The data are verbal descriptions of the sensations, feelings, and thoughts experienced during working with children with severe multiple disabilities in research practice, the views of disability reflected in these experiences, and life histories as the backgrounds of these experiences. In May 2021, YN wrote a life history. The three other members provided their impressions and questions; consequently, YN made additions to the essay.
In the process of organizing and reconstructing the essay of YN, the study noted that the life histories, views of disability, and research practices of the researchers were clearly and inextricably intertwined. Therefore, following YN, MY wrote an essay in November 2021 followed by SO and TA in February 2022.
Data analysis procedures
Preliminary analyses were conducted in parallel with the data collection process, including essay reconstruction, comments, and additions. Subsequently, the following analyses were conducted to examine the personalities and interactions among team members.
Extract codes, categories, and themes
MY read the four descriptions and conducted an analysis to identify codes, categories, and themes; regarding CAE classification, this style is called the analytic method. Following the method of Chang et al. (2013), where all descriptions were coded per paragraph, the generated codes were compared and categorized, and the categories were further divided into four themes.
Team discussion
The results of the analysis were shared, recorded, and added to a discussion among the four participants in July 2022. Discussion themes included the manner in which the description of YN influenced interactions within the team, the involvement of the other authors in each experience, and the significance of reading and interacting with the essays of the team members.
Ethical consideration
Although this paper presents the self-study of the researchers, a few of the experiences described are based on the research project with children with severe multiple disabilities and with typical development. Prior to the commencement of this project, written or verbal consent was obtained from the parents of all children and institutions concerned. The names of individuals, institutions, and other personal information of the participants, except for the four researchers, are anonymized.
Findings
Table 2 lists the codes, categories, and themes generated. Each of the four themes is described with particular reference to the categories related to the research questions.
Generated themes, categories, and codes.
Note. The views of collaborators whose narratives correspond to each code are marked with check marks.
Formation of views of disability through childhood experiences
Affiliative attitude
The first-person with a disability that SO met was a classmate from kindergarten to junior high school. Although paralysis affected the right side of his body, he seemed as able as other children (favorable interactions with children with disabilities). The perception of SO about disability was also influenced by his father who had a disability in his left leg after a car accident. He also told SO that he was blind in one eye. Thus, SO did not perceive his father’s disability as well as that of his classmate as a negative factor (view of disability as influenced by father). Alternatively, TA’s hometown had a large university hospital and a special needs school, and he grew up seeing and hearing the cheerful atmosphere in which the local residents treated children with disabilities (sense of community-based support).
Differential and evasive attitude
As a child, YN gained limited opportunities to meet people with disabilities. He remembers, “when I was in elementary school, I met a woman and her child. I had never met a person with extremely short arms before. I pretended not to notice that because I felt like it was something I wasn’t supposed to see.” YN’s mother then told him that the external malformation was apparently due to fertility drugs. YN found the situation “incredibly frightening, as if it were someone’s revenge for trying to control life with human power. Since this experience, I have felt as if disability is something that should not be ‘seen’ or ‘talked about’” (the horror of seeing a malformation).
Attitude of pretending not to see
MY also grew up in an environment where no one around her had a disability; however, a girl in the same class at junior high school had an amputation from the right wrist down due to an accident. She was a bright and kind person who could do anything with her prosthetic hand and was respected by classmates. However, she once cried when a boy in their class teased her, “Machine one!” MY could not look directly at her prosthetic hand or talk about it (view of disability as not my own affair).
Modification of views of disability through direct interaction with children with disabilities
Being attracted
After entering university, MY participated in volunteer activities, such as playing in parks, for schoolchildren with intellectual disabilities. She gradually became enthusiastic about the activity and began to participate without fail. She stated, “I felt a great sense of accomplishment when I could communicate with children who could not easily communicate with me verbally through play. I loved the children and was happy that they liked me” (being attracted to working with children with disabilities).
Conflicts as a practitioner
Desire for support
SO experienced a developmental deviation during his childhood and felt frustrated because of it (motivation and ideas for support):
From this personal experience, I would consider it important to be able to do things on one’s own, with or without assistance. I have always wanted to somehow alleviate the frustration of not being able to do what they want to do well because of their disability, rather than the presence or absence of a disability.
YN recalled that following the ratification of the Convention on the Rights of Persons with Disabilities in Japan, students with various disabilities began to enter the university where he works. He obtained the impression that discriminatory attitudes toward disabilities were rapidly fading from society. He stated, “I tried to be a faculty member who was more understanding of disability than most, and I was proud of the fact that I was” (motivation and ideas for support).
Difficulty in achieving support
SO clarified the purpose of this practice by stating that the goal of this practice is “to have the sounds they produce fuse with others as an ensemble and become music,” and “to share a place where the child becomes a communicator and is involved” for children with severe multiple disabilities and with difficulty in communicating independently He also elucidated the purpose of the practice (fun with music and the difficulty of making it work):
I would like to consider how to reconcile the music that TA aims for, who emphasizes the fun of improvisational musical activities, with the music that cannot be shaped without prior preparation by YN, who specializes in musical expression using ICT equipment.
Reflection on the views of disability at the intersection between professional activity and personal history
Difficulty in verbalizing and sharing views of disability
Regarding the transformation of disability from being the affair of another person to being one’s affair, YN wrote the following in his essay: “It is difficult to describe it more specifically at this time. I hope you will forgive me for this” (recognizing the limits of verbalization). In addition, SO stated that, “Involved in this project, I had the following experiences. I will write honestly, so please do not be offended . . .” (hesitation to share and publish).
Influences of personal history on practice
MY wanted to be involved with people with disabilities. And at the same time, she wanted to avoid that because it was not easy for her. Through this study, MY realized that she feared intellectual inferiority: “I’m afraid of feeling inferior myself, and I’m afraid of feeling inferior to other people” (difficulty in acknowledging intellectual disability). YN commented:
While participating in this study of children with severe multiple disabilities, I think there is a part of me that has turned away from intellectual disabilities. I don’t remember being directly involved with people with intellectual disabilities as a child. I was shocked to come face to face with that as I worked on this study (difficulty in acknowledging intellectual disability). As I got older, problems began to appear one after another in various parts of my body. I turned 60 this year, and I am definitely walking toward aging and disability. It’s the way to go for us all (perception of approaching disability with age).
TA lived abroad as an orchestra player and experienced diversity. However, complications with his intestines worsened, and he underwent emergency surgery. During his hospitalization, “the warm involvement of the medical staff and the warm conversation of the elders completely changed my values, which had been all about music” (change in values due to illness).
Change in views of disability through practice
Initially, YN perceived severe multiple disabilities as being intertwined. However, he says that he has changed, partially because he faced the aging of his parents: “I have come to feel that disability is not a matter of linear degrees, but is caused by various individual conditions,” and “I have come to think of the four sufferings (birth, aging, sickness, and death) in Buddhism as very real issues. This has also led me to come up with the idea of devising electronic devices” (view of disability as being individual, diverse, and my own affair).
Team discussion
When the researchers wrote their essays in May 2021 and February 2022, they remained hesitant to share their views of disability with one another (4a). However, during the discussion in July 2022, SO expressed that each member of the team possessed varying degrees of knowledge and understanding about disability and acutely felt the difficulty of communicating his understanding of disability to others given that this research team is an interdisciplinary one.
In addition, the dynamics within the team was discussed; as SO highlighted in his essay (3b), occasional conflicts occurred in manner that work was undertaken between TA (a violinist who excels at improvisation) and YN (an electronics developer who excels at programming). However, despite the transitory frustration, such conflicts were openly shared for the first time during this discussion.
Discussion
RQ1
The childhood experiences of the four researchers formed their views of disability. They were motivated as practitioners but also experienced conflicts with difficulties related to actual support. Furthermore, their past and ongoing personal histories influenced their professional activities as practitioners and researchers. In addition, they were able to reflect on their own views of disability and gain new insights.
On the one hand, YN was proud to participate in this study and self-identified as a professor who understood disabilities (3a); on the other hand, the Buddhist law of causality unintentionally influenced his perception of disabilities. The traditional Japanese popular culture frequently portrayed the fatalism that “misfortune is retribution for the sins of the previous life.” YN realized that this Buddhist law of causality underlies the sense of discrimination and dislike of disability, which were clearly present in the Japanese society in the past and at present and continues to remain in an imperceptible form (1b). This notion is also manifested as fear and confusion during interaction with children with severe multiple disabilities (4b). YN experienced the illness of his parents and the death of his father. Consequently, he perceived disability as “my own affair” and “the way to go” (4c). This view also led to a change in his policy for creating electronic devices, which aims to improve their usability.
SO had a friend with a disability when he was a child, and his father also had a disability (1a). In addition, he is aware that he experienced a developmental deviation (3a). As an educator, his belief is that of “helping people to do things on their own” (3a), which was reflected in his proposal in this practice.
TA observed a cheerful atmosphere that surrounded facilities for the people with disabilities in his childhood community (1a). In addition, through his experience abroad, he became aware of multiculturalism and his serious illness (4b); he was oriented in practices without discrimination between children with typical development and with disabilities and between adults and children.
MY’s view of disability was influenced by her childhood (1c), where she had limited contact with children with disabilities, and by her club activities at university, where she learned about the joy of working with children with disabilities (2a). This aspect was evident in the manner that MY was oriented toward a sense of togetherness and enjoyment with children with disabilities in her practice.
The results suggest that the views of researchers about disability motivate their practice and research, as well as shape their relationships with children with disabilities and collaborators, which occasionally reaches a point where progress is impeded. However, stereotyping is involved. Prior research indicates that double-sided value stereotypes influence discrimination and prejudice (Fiske et al., 2002), and the same is true even among researchers. Therefore, a few aspects can be difficult to verbalize and share even among researchers. Confronting the view of disability requires an awareness of negative stereotypes embedded in oneself and others.
RQ2
The relationship between the view of researchers about disability and their research practice is bidirectional. This study is an activity directly related to children with severe multiple disabilities; thus, the study observed a direct influence on the view of disability of the researchers.
YN was involved with a child with severe multiple disabilities for the first time in his life (4b). Eventually, as he continued his practice, he realized that each child with disabilities exhibits major individual differences (4c). Through writing, he began to understand the connection between his personal history from childhood and his current view of disability (4b).
The perception of YN and MY of disability as the affair of other people (1b and 1c) was transformed into that of disability as my own affair. This transformation was dramatic for YN. He had limited previous experience with children with severe multiple disabilities but experienced major life events during his practice period.
However, the study confirmed that the descriptions of SO and TA do not point to significant changes in their views of disability due to research practice. However, team discussions indicated that they reconsidered their views of disability through their involvement with others, including the research team and the participants.
Initially, we focused only on the relationship between children with disabilities and music. We infer that the idea of enabling children to play, although they could not play previously, was based on an ability-based medical model. Through trial and error, our research practice shifted to a perspective of developing equipment that emphasizes the joy of the engagement of children with others through music. Eventually, we began to focus on the relationship among children with disabilities, music, and ourselves as practitioners and researchers and realized that children with disabilities, who had been the others and subjects of our research, were relevant to our lives. Consequently, through research practice, we reconsidered the “third-person nature of researchers” (Kurita, 2020) and achieved the first-person perspective on disability.
RQ3
By reading our autoethnographies and discussing their impressions, we learned about one another’s differences. In addition, we were able to communicate ideas that we were reluctant to directly express and discuss the differences in our views of disability. Furthermore, we noted considerable differences in exposure to disability according to when and where the researchers were born and raised. Japanese culture influences Japanese researcher’s views of disability; however, a diversity also exists within the Japanese view of disability, which suggests that religious views, war experiences, and experiences of being educated significantly influenced the individual views of disability. For example, YN’s perception of Buddhist causality as the basis of his view of disability, which he adopted during his upbringing, differed from that of the three other participants, who were of a younger generation. Through this study, we pooled our perspectives on disability and life histories, found differences and similarities according to region, generation, and specialty, and recaptured the meaning of our practice.
This outcome was facilitated through the collaborative process of CAE (Chang et al., 2013). The barriers presented by the social model of disability also exist among people without disabilities. To first become aware of the existence of barriers, knowledge and discussion about differences between the self and others are important requisites. The current study suggests that CAE is an effective method for this objective.
Conclusion
The perception of disability and the life histories of the researchers of the current study as a background for their research practice on music education for children with severe multiple disabilities were described, analyzed, and discussed through dialogue within the research team based on CAE.
The childhood experiences of the researchers influenced their perception about disability, which were modified by direct interaction with children with disabilities. These views also motivated them as practitioners to collaborate with children with disabilities; however, they also led the researchers to experience conflicts with the difficulties of actual support. Furthermore, their current life experiences, in addition to their life histories, influenced their professional activities as practitioners and researchers.
However, the study observed changes in the direction in which research practice influenced the view of disability of the researchers. In certain cases, the perception of disability as my own affair changed dramatically from the view of disability as the affair of other people.
As the researchers conducted CAE, they internalized these personal changes, and which led to deepened dialogue and mutual understanding among the researchers. Thus, they were able to candidly discuss their difficulties in practice and confirm the impact of generation and regional differences on one another’s views of disability. This study demonstrated the potential for the transformation of the researchers’ views of disability in the process of music education practice, as well as the possibility of collaborating while acknowledging different views.
This study demonstrated that the views of disability of the individual researchers involved in the research practice in music education originated from their upbringing and may be varied and transformed in their current lives and practices. Thus, the paper presents suggestions for researchers of music education for children with disabilities for the analysis of disability from the first-person perspective and for discussion of the same topic among co-researchers.
In Japan, policies and practices regarding the inclusion of persons with disabilities in education are being promoted; however, transforming the barriers embedded in the cognition of people may take time (Cabinet Office, 2008). This case is especially true for children with severe multiple disabilities (Takahashi, 2016). In such a situation, CAE by practitioners–researchers can be expected to encourage dialogue and change attitudes in the educational field and society by examining and discussing their views of disability and its transformation and by sharing these views with other practitioners and researchers.
Furthermore, this method could be used in practice aiming the inclusive direction with analysis of disability from the first-person perspective and sharing of views among students, teachers and co-researchers. The reason is that music education practice is inseparable from not only the view of practitioners about music and music education but also all values and attitudes toward others, as well as from the life histories of practitioners that co-construct these values in practice.
This study has several limitations. It is based on the practice of one research team over a certain period. Therefore, the accumulation of data from other research teams and the future practice of this research team should produce more universal findings. Moreover, international comparison of the cultural backgrounds that underlie the views of people with disabilities is expected.
Footnotes
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by JSPS KAKENHI [grant number 18K02599].
