[Invited Submission - Special Issue]
Constructing a Two-Way Street: An Argument for Interdisciplinary Collaboration through an Ethnomusicological Examination of Music Therapy, Medical Ethnomusicology, and Williams Syndrome
By Alexandria Heaton Carrico
Abstract
In this article, I investigate the ways in which methodological exchange between the fields of medical ethnomusicology and music therapy (MT) creates an interdisciplinary two-way street which, on the one hand enhances therapeutic practice by adopting an ethnographic and cultural understanding of disability, and on the other enriches ethnomusicological studies by ethnographically utilizing music therapy techniques. In support of this viewpoint, I offer ethnographic accounts of my time conducting research on music and Williams Syndrome and working alongside music therapists at the Whispering Trails summer camp for children with Williams Syndrome (WS) in Grand Rapids, Michigan. Ultimately, I argue that synergistic collaboration between the fields of medical ethnomusicology and music therapy will not only augment scholarship in these areas, but will also allow ethnomusicologists and music therapists to address issues of social justice and to promote accommodation and acceptance for disability within society.
Keywords: Disability studies, medical ethnomusicology, music therapy, Williams Syndrome
Introduction: Medical Ethnomusicology versus Music Therapy
When I tell people that I am an ethnomusicologist who specializes in music and Williams Syndrome (WS)[1], a rare genetic condition that has been labeled as an intellectual disability, I am often met with slightly furrowed brows accompanied by the question, “Do you mean music therapy?”
This question highlights the fact that many people (both inside and outside of academia) are unaware of the clear disciplinary goals and methods that distinguish music therapy (MT) from the ethnomusicology of disability studies. The primary distinction between these two fields is epistemological: music therapists are charged with bringing about change or improvements in their clients; by contrast, ethnomusicologists do not seek to “change” their interlocutors through therapy, but rather strive to learn from them by listening to their narratives, observing their musical experiences, and participating in collaborative musicking with them.[2] Michael Bakan, an ethnomusicologist whose research examines the intersections of music, autism, neurodiversity, and advocacy, has recently explored these disciplinary divisions. As stated by Bakan in a previous issue of Voices:
…the job of a music therapist, and in turn the charge of music therapy at large, is to effect change through programs of intervention and treatment; and more specifically, the locus at which change is expected to happen is the individual client, whose course of treatment should optimally be beneficial in terms of measurable gains in ability, functionality, health, wellness, or other areas of diagnosed need. (Bakan, 2014)
Despite these distinct differences, I have found that I share many similarities with my music therapy colleagues. Over the course of four years working with music therapists at the Whispering Trails summer camp for children with Williams Syndrome sponsored by the Williams Syndrome Association in Grand Rapids, Michigan, I have realized that our primary commonality is the mutual belief in the power of music to affect one’s quality of life. In this way, music is inherently therapeutic. However, while the music therapists I work with employ musical interventions to affect change in people with WS, I am more interested in utilizing the musical narratives of the individuals with Williams Syndrome to affect change in society. As an ethnomusicologist, I privilege the voices of my interlocutors, who from my standpoint are not patients or clients, but cultural experts. Like Michael Bakan’s Autistic interlocutors and musical collaborators, the individuals with WS with whom I have worked, socialized, and played music during the course of my research are, like the people of any other cultural group, “experts at being who they are, whether as individuals, as musicians, or as exponents of the cultural worlds and lifeways they reflect, embody, and inform” (Bakan, 2015, p. 131). My role in engaging with them is to listen, to collaborate, and, ultimately, to share their stories. The narratives emergent from these stories are crucial to communicating the abilities and strengths of people with WS. Moreover, and just as important if not more so, such narratives, which share a primary emphasis on music and musical experience despite their diversity in many other regards, provide a space in which personal expression and heterogeneity are valued rather than marginalized. These stories privilege people over labels of disability and demonstrate that inclusion and an appreciation of human diversity are vital to creating a healthy society for all of us.
This ability- and person-centric approach is the cornerstone of my research and informs my view of Williams Syndrome and disability studies more broadly. However, this framework is not unique to ethnomusicologists. Through discussions with my music therapy colleagues, I came to understand that, though they sought to bring about positive change in the lives of the campers through therapeutic means, they operated from the standpoint of privileging the campers’ abilities and strengths over arbitrary designations of disability. These viewpoints demonstrate the influence of the disability rights movement and the recent incorporation of disability studies (DS) theory into the field of MT, a point that will be explored later in this article.
The application of DS theories to MT practices provides a theoretical framework for tempering therapeutic goals with an appreciation for client competence and neurological, physical, and psychological diversity. Moreover, the incorporation of disability studies moves music therapy towards a cultural understanding of disability, which opens up exciting possibilities for greater collaboration between MT and ethnomusicology, and medical ethnomusicology in particular. As stated in the Oxford Handbook of Medical Ethnomusicology, medical ethnomusicology is a sub-field of ethnomusicology that integrates “research and applied practice that explores holistically the roles of music and sound phenomena and related praxes in any cultural and clinical context of health and healing” (Koen, Barz, Brummel-Smith, 2008, p. 3-4).
In this article, I explore the intersections between MT, DS, and medical ethnomusicology by first examining the how these fields negotiate the historical binary between the medical and social models of disability. I then investigate the ways in which methodological exchange between the fields of medical ethnomusicology and MT creates an interdisciplinary two-way street which, on the one hand enhances therapeutic practice by adopting an ethnographic and cultural understanding of disability, and on the other enriches ethnomusicological studies by ethnographically utilizing music therapy techniques. In support of this viewpoint, I offer my experience at Whispering Trails to provide ethnographic narratives that demonstrate how the therapists with whom I work blend elements of the medical and social models of disability in their interactions with the campers with WS. Ultimately, I argue that synergistic collaboration between the fields of medical ethnomusicology and music therapy will not only augment scholarship in these areas, but will also allow ethnomusicologists and music therapists to address issues of social justice and to promote accommodation and acceptance for disability within society.
Disability Studies, Ethnomusicology, and Music Therapy: My Approach
Within the field of disability studies, researchers and scholars have worked to overturn the medical model of disability, which generally views disability as a problem to be “fixed,” (Byrom, 2001, p. 133) in favor of the social model of disability. According to disability studies scholar Tobin Siebers, “The social model challenges the idea of defective citizenship by situating disability in the environment, not in the body. Disability seen from this point of view requires not individual medical treatment but changes in society” (Siebers, 2008, p. 73). As an ethnomusicologist who ethnographically studies music and people with intellectual differences of ability, or diffabilities (Kennedy, 2012), I utilize the social model of disability, as well as the recently emerging model of neurodiversity, a concept that has been primarily applied to studies of autism. According to autistic self-advocate Nick Walker’s position on neurodiversity, “There is no ‘normal’ or ‘right’ style of human brain or human mind, any more than there is one ‘normal’ or ‘right’ ethnicity, gender, or culture” (Walker, 2013). These models form the foundation for my research, in which I approach my interlocutors as capable, neurodiverse individuals who are cultural experts in their own right.
I feel it is important to say that, currently, I identify as an ethnomusicologist of Williams Syndrome rather than as a medical ethnomusicologist. This is primarily because my research does not focus on traditional concepts of health and healing. Rather, my work on music and Williams Syndrome primarily explores how musical experiences serve to build community, provide opportunities for self-advocacy, and transform notions of WS from a dis-ability into a difference of ability, or diffability. However, my interaction with music therapists in the Williams community over the past four years has not only altered my perceptions of MT and its goals, but has also alerted me to the rich possibilities for interdisciplinary collaboration that exist between music therapy and ethnomusicology, and medical ethnomusicology in particular.
In applying the medical and social models of disability to MT practices, it would be easy to categorize MT as fitting entirely within the medical model, particularly as music therapists often use music to facilitate positive change in an individual client. Such assumptions are reinforced by statements from the American Music Therapy Association (AMTA), which states that “The aim of therapy is to help people with WS to optimize their talents and musical affinity in order to address multiple potential outcomes” (AMTA, 2013, p. 1). However, it would be inaccurate to cast MT in such a one-dimensional light; for while music therapists may have goals that align with the medical paradigm, this does not mean that they do not draw upon elements of the social model of disability. Much like ethnomusicology, music therapy is a diverse field that encompasses a variety of practices. There are many forms of music therapy that reject pathologizing views of clients with disabilities and seek to bring about positive change in individuals clients, communities, and society at large. These viewpoints can be seen from the numerous studies within community music therapy (Stige, Ansdell, Elefant, & Pavlicevic, 2010) that focus on “collaborative and context-sensitive music-making” in order to address “concerns for health, human development, and equity” (Stige, 2010, p. 5). Privileging ability over disability is also evident in recent MT studies that have incorporated theories from disability studies, such as the social model of disability and the conceptualization of the competent client[3] (Bassler, 2015; LaCom and Reed, 2014; Metell, 2014; Rickson, 2014; Rolvsjord, 2014; Straus 2014).
Rules of the Road: Intersections of Medical Ethnomusicology and Music Therapy
The inclusion of disability studies perspectives and models in music therapy opens the door for blending elements of the social and medical models of disability by acknowledging the real medical difficulties and impairments that people with disabilities face, while also understanding the social and cultural stigmas linked to designations of disability.[4] This new emphasis on sociocultural issues provides fertile ground for applying elements of medical ethnomusicology to music therapy and vice versa.
As previously stated, medical ethnomusicology seeks to holistically explore how music is used in cultural and clinical contexts of health and healing. Though fairly young, the field is rich with diverse studies that span from explorations of musical interventions in populations with HIV/AIDS in Africa (Barz, 2006; Barz & Cohen 2011) to geriatric populations (Allison, 2010; Allison 2008), to examinations of autism (Koen, Bakan, Kobylarz, Morgan, Goff, Kahn, & Bakan, 2008). These studies generally proceed from a focus on ethnography, musical experience, and the search for cultural understanding that then leads to explorations of how music is tied to concepts of health and healing.
This grounding in ethnography and narrative with an emphasis on healing creates possibilities for expanding such studies to include explorations, and even applications, of therapeutic models. In terms of disability, the application of music therapy interventions to studies of medical ethnomusicology could generate interdisciplinary collaborations that lead to improving the quality of life for people labeled as having disabilities, both through individually oriented therapeutic practices. Additionally, such practices could engender change in societal attitudes towards people with diffabilities through the promotion of ethnographically informed understandings of disability. Likewise, music therapists proceeding from the point of therapeutic interventions might filter their own work through the lens of ethnography. Such blending of perspectives would give therapists a more culturally grounded understanding of their clients and allow them to utilize therapeutic practices to increase concepts of individual client competence, as well as to promote greater accommodation and acceptance for people with disabilities. This proposed crossover creates a two-way street for interdisciplinary collaboration that seeks to not only benefit individual clients through ethnographic and therapeutic means, but to also tackle issues of social justice.
Having established how this synergistic collaboration might work in theory, I will now explore how such crossover might be executed in the future by ethnographically examining my experience working with music therapists and individuals with WS at Whispering Trails. But first, what is Williams Syndrome?
Narrative Threads
My name is Kagen Gibson and although I do have a disability, I would not consider it a disability; I would consider it more as a personality…I want to become a musician and I want to learn how to talk to people about people with special needs and how they should be treated…I think that music is kind of a way that we are sponsored. It’s kind of a way to be a leader. I think that music helps us to become more the people that we are, cause a lot of people don’t know that there is more to us than meets the eye. (Kagen Gibson, a musician with Williams Syndrome, in discussion with the author, August 2013)[5]
Williams Syndrome is described in medical literature as a rare congenital disorder caused by the deletion of genetic material on the seventh chromosome. Its diagnostic profile is defined mainly in terms of this genetic deletion and cardiovascular disease caused by narrowed arteries that result in “a distinctive facial appearance and a unique personality that combines over-friendliness and high levels of empathy with anxiety” (NINDS, 2008). The first diagnosis of a patient with this condition was made by New Zealand cardiologist John Cyprian Phipps Williams in 1961. Beyond meeting core WS diagnostic criteria, individuals with Williams Syndrome also face challenges in spatial-motor skills, have learning and behavioral disabilities, and experience high levels of anxiety (ibid.). Additionally, they exhibit a distinct behavioral phenotype characterized by hypersociability and highly developed musicality. This is the story that medical literature offers to the world. However, what Williams Syndrome is and how it is lived and conceptualized by those in the WS Whispering Trails community is better understood by ethnographic narratives, such as the one above, than by such disability-centric descriptions.
Narratives are central to the fields of ethnomusicology and disability studies. They provide an accessible point of entry to discussing complex concepts and also serve to humanize people who are often marginalized as “Other.” As Thomas G. Couser expresses in his article “Disability, Life Narrative, and Representation,” “Because disability life narratives can counter the too often moralizing, objectifying, pathologizing, and marginalizing representations of disability in contemporary culture, they offer an important, if not unique, entree for inquiry into one of the fundamental aspects of human diversity” (Couser, 2013, p. 459). I have found that such narratives not only counter dis-abling conceptions of disability, but can also be used to alter misinformed interdisciplinary perceptions, as is the case in this article.
Though I remained a participant-observer grounded in ethnomusicological and ethnographic priorities throughout my fieldwork, it was through listening to the narratives of music therapists, as well as my interlocutors with Williams Syndrome, that I came to better understand MT, its importance at Whispering Trails, and the undeniable value of interdisciplinary cooperation. Like the campers with WS and their parents, my MT colleagues also shared their narratives with me and in so doing opened my eyes to the interconnectivity of ethnomusicology, music therapy, and Williams Syndrome, and to the rich possibilities for future collaborations between medical ethnomusicologists and music therapists.
Ethnographic Tales of Whispering Trails: Music Therapy and Developing Life Skills
As a musician and musicologist, I understand the importance and effectiveness of music in everyday life. During my fieldwork, I was instantly affected by the enthusiasm, energy, and joy of the young campers with Williams Syndrome with whom I interacted. Throughout the week, I attended daily classes with campers from the ages of 6-12 and witnessed sessions where therapists adapted music therapy practices and techniques to fit the needs and ages of each group. I assisted therapists during these sessions and was actively involved in therapeutic activities.
Though I remained grounded in my ethnographic methodologies and ethnomusicological viewpoints, I learned a great deal from my music therapy colleagues, including the ways in which music therapy techniques could be adapted to aid ethnomusicological study. One of the most significant examples of this possibility for methodological crossover emerged from music therapy activities that helped the campers to express their thoughts and to communicate with the therapists and their parents, as well as with their peers. This was most evident in sessions that featured instrumental conversations and in one-on-one sessions, which will be described in greater detail below. Applied to ethnomusicology, and medical ethnomusicology specifically, such techniques allow the ethnomusicologist to engage in participant-observation with her interlocutors in musical settings, which is commonplace in ethnomusicology; however, therapeutic practices can be further applied to facilitate personal expression through musicking, which in turn allows the interlocutor to experience self-actualization while communicating his or her musical narrative. Thus, medical ethnomusicologists can proceed from ethnomusicological methodologies while incorporating techniques from music therapy. This merging of ethnography with therapeutic practice presents a holistic model for viewing one’s interlocutor in terms of his or her abilities while also acknowledging his or her needs. The following ethnographic accounts of the activities and narratives of the music therapists at Whispering Trails examine MT techniques and explore the ways in which such interventions might be applied to medical ethnomusicology.
Through my close interaction with music therapists at Whispering Trails, I realized that the music therapists were just as much culture bearers as the children with WS with whom they worked, and quickly found that during the children’s camp I was not only engaged in an ethnomusicology of Williams Syndrome, but was also exploring the ethnomusicology of music therapy within the Whispering Trails community. Through my daily interactions with the children, parents, staff members, and music therapists, I observed the importance of MT, and musicking more broadly, within the camp environment. Planned MT classes and music emergent from these sessions pervaded the camp soundscape, facilitating opportunities for personal expression, community building, and the development of life skills.
Each music therapy session featured different activities that reflected the focus and goals of a particular therapist based on the educational needs of the campers. Since the development of basic mathematical skills is important for children, and can be particularly challenging for people with WS, one session was dedicated to counting by numerical intervals. The certified music therapist would accompany the campers on guitar and together they would practice count singing by 2s, 3s, 5s, 10s, and 25s. Though this session was similar for all groups, the therapist modified activities to fit the age, developmental level, and maturity of the group members. For example, while the 8-9-year-olds were asked to count by 3s to 30, the eldest group was expected to count by 3s to 60. Within the older groups there was also a greater focus on counting by 25s and then applying this concept to calculating money. This exercise was considered particularly important by both therapists and parents because it reinforced monetary concepts that were crucial for the campers to develop in order to move toward eventual financial independence.
Other music sessions emphasized the development of social skills. Concepts of manners, sharing, and dialogue exchange were explored through singing songs and conducting musical conversations via instrumental jam sessions. One song that was particularly popular focused on asking permission before taking things and then accepting a possible answer of “no” in a positive way: “When I see something I want/ do I just reach and grab it? / No, no! I should ask/ ‘Can I play with that?’” These songs were not only fun for the campers to sing, but were also effective in reinforcing the concepts that they encompassed. Counselors and therapists would draw upon these resources outside of sessions to remind the campers of the lessons they had learned in class. Instead of having to verbally correct a camper by saying, “No, don’t just grab things without asking,” the staff member could musically reinforce the lessons by singing, “When I see something I want…” In most instances, the camper would stop what he or she was doing and begin singing along. This musical intervention positively reinforced social skills and prevented the camper from feeling as though he or she was being chastised.
Instrumental conversations were the most popular activity among the campers. With its emphasis on communication and personal expression, this activity seemed to be one of the interventions best suited to blending elements of MT and ethnomusicological practice. In these sessions, the therapist would allow each camper to choose an instrument and select someone to be the leader. This camper would then lead the rest of his or her peers by dictating dynamics, rhythm, and articulation through his or her playing. Occasionally, the leader and the rest of the ad hoc ensemble would switch off playing or fall into a call-and-response pattern. The purpose of this activity was to encourage the campers to exercise impulse control by waiting their turn to play and to engage in a productive and respectful musical exchange with their peers. Additionally, this activity provided each camper with the opportunity for freedom of musical expression and artistic validation during their turn as the leader.
During the extended children’s camp (in which the older children participated in activities similar to those they would experience the following year at teen camp), many of the campers took private music lessons with staff members. These sessions were diverse in nature and varied from voice and instrumental lessons to using programs such as Ableton Live and MIDI controllers to create musical compositions. In addition to honing musical skills, these lessons facilitated musical expression and opportunities for decision-making. Such lessons were perhaps the clearest instance of how music therapy interventions could be applied to medical ethnomusicology practices in order to blend elements of therapy and ethnography. Below I provide an ethnographic account of a lesson involving Cameron, a 10-year-old boy with WS, and Izzy Branch, a counselor and music therapist; this example illustrates how these music lessons advanced musical expression and decision-making skills through the collaborative construction of a musical narrative.
Izzy and Cameron Make a “Robin Song”
During their lesson conducted in the camp library, Cameron was drawn to a book about robins. He took it off the shelf and began reading it. Izzy, seeing this as an opportunity, encouraged Cameron to incorporate the book into their music lesson. Izzy recalls,
He was not attentive and ran across the room and grabbed a book. I said “We aren’t at reading camp, we are at music camp; so if you want to look at this book you have to sing it to me.” I know Cameron has innate pitch and ability and loves to sing. I was just playing four chords and he would go through and if he didn’t get the words right you can hear on the recording where I would say, “Please wait. Go back. I know you can read that.” Because I knew he could do it. His dad, Lance, said that was his favorite part of the song, because he knew he could do it. (Izzy Branch in discussion with the author, August 2013)
Through this compromise, the lesson was transformed from a purely musical activity to an opportunity for Cameron to demonstrate his musicality and reading abilities. Cameron greatly enjoyed this lesson and the next day asked if he could sing the song at talent night that evening. Izzy, who had recorded their session the day before, agreed and suggested adding instruments to the recording. Through the use of Garage Band and auxiliary percussion instruments, Cameron, his dad Lance, and Izzy worked together to create a musical arrangement. Izzy recalls,
His dad happened to come to that session and so we got to each add a layer together and Lance got to make music with his son; we got to manipulate it on the computer. Cameron specifically added rhythm sticks, maracas, claps, and electric piano facilitated through musical typing in Garage Band; his dad added tambourine, and I added dumbek and we all clapped. It’s not like Top 40 music, but it’s a finished project that he finished in an hour, and it was completely improvised, and he got to make all the choice procedures. (ibid.)
In talking with Izzy, choice and decision-making were the main focal points of her lessons with Cameron. Though Cameron made all of the decisions about instrumentation and form, Izzy facilitated these choices by giving him options to make the process more manageable. Izzy and the other staff members frequently emphasized the importance of independence both within and outside of lessons. One of the goals of camp and of the Williams Syndrome Association (WSA) is to promote independent living and to create adaptations that make independence possible. According to Izzy,
I had no doubt in my mind that [Cameron] could do it. That is the thing with people with special needs—I feel like so many people just put them on this “they can’t do that; they need help with this.” No, they can accomplish so many things independently. People just don’t give them the chance…They need to make active decisions on their own; that is independent living. We need to set them up so that they can live independently as quickly as possible just like any other typically functioning person. They can do it—I have no doubt in my mind. (ibid.)
Rather than doing difficult tasks for the campers, the therapists adapted situations to ensure that the campers were successful in completing challenges autonomously. The development of decision-making skills and a sense of independence are regularly cultivated in all children, be they neurotypical or neurodiverse. However, as Izzy mentioned, people who have disabilities are often defined by misguided perceptions of what they cannot do, rather than by their abilities. Thus, for Izzy and for many of the music therapists at Whispering Trails, it is particularly important to facilitate and accommodate choice-making procedures for young campers to ensure that as adults they will have the tools to make their own decisions and to become self-advocates. This is one instance of how the therapists accomplished therapeutic goals by allowing the campers to exercise their own agency and to express themselves through collaborative musicking; such examples not only demonstrate how music therapists blend aspects of the social and medical paradigms of disability, but also provide a model for how medical ethnomusicologists could use therapeutic interventions to aid their interlocutors in articulating their identities in ethnomusicological settings.
“Bugaloo”: Creating Communitas
Outside of planned music therapy sessions, music therapists freely interacted with parents and campers in musical and nonmusical activities, creating a cohesive feeling of community in which all members came together to co-create a culture based on the shared experience of Williams Syndrome. Perhaps one of the most important and meaningful camp activities, or rituals, is called the “Bugaloo.” Each evening the entire camp gathered around the campfire to roast marshmallows, talk, and, most importantly, to sing and dance. Counselors and therapists took turns leading the festivities by playing instruments and singing popular top 40 hits and camp songs. While some songs received more attention than others, “Bugaloo” was (and is) the unanimous favorite and was thus performed on a nightly basis. During this song everyone sings the chorus, which is then followed by a counselor choosing an individual to perform his or her own version of the dance. The song follows a call-and-response format:
Everyone: Bug-a-loo, bug, bug-a-loo/bug-a-loo, bug, bug-a-loo
Counselor: Hey, Sarah!
Sarah: Hey, what?
Counselor: Hey, Sarah!
Sarah: Hey, what?
Counselor: Show us the way that you BUG-A-LOO!
*Drum solo coinciding with a brief freestyle dance
This song may last for up to twenty minutes if the counselor calls everyone’s name individually. “Bugaloo” is not only an essential component of each campfire, but is also vital to the overall cohesion of the camp community. Through the calling of their name each camper is individually recognized and free to express him or herself through improvised body movement. As each camper “bugaloos,” their peers offer cheers and shouts of encouragement.
This is their time to shine and to musically and physically express themselves without fear of judgment. Parents, counselors, and therapists are also included in this community-building ritual. While many parents merely observe the majority of the campfire activities, all are called to fully participate in the “Bugaloo.” In these moments of musical expression, hierarchical structures of parent-child, adult-minor, and therapist-client dissolve. As each person’s name is called, he or she enters a liminal space created by music and dance. This state of liminality is then followed by what the symbolic anthropologist Victor Turner described in his book, The Ritual Process (1969), as communitas. According to ethnomusicologist Thomas Turino, communitas is “a possible collective state achieved through rituals where all personal differences of class, status, age, gender, and other personal distinctions are stripped away allowing people to temporarily merge through their basic humanity” (Turino, 2008, p.18). This transition from a state of individuality to being one with the community can be seen in the camp ritual of “Bugaloo.” In the process of shedding inhibitions and engaging in a dance that is entirely one’s own, each person crosses the threshold separating the individual from the collective and is initiated into the camp community. This musical ritual serves to affirm the individual and to construct a supportive community that is free of judgment. Once you bugaloo, you belong.
The sense of belonging and the close-knit community that musical experiences such as the “Buglaoo” produces are paramount to the experience of the campers, parents, and music therapists. Within the camp environment, Williams Syndrome is not treated as a deficit, but rather as a marker of difference that is appreciated, nurtured, and accommodated. In this way, the social model of disability reigns supreme, though elements of the medical model pepper the musical landscape through daily music therapy interventions. While the parents, music therapists, and campers are initially drawn together by the shared experience of WS, over the course of the week they create a community and culture based on mutual support, understanding, and possibility for the future that is crafted through shared musical experience and music therapy.
The Williams Syndrome Whispering Trails community presents a compelling case for a culture in which music is intrinsically a part of the lives of its members. Music not only serves as an effective tool for accommodating learning difficulties for children and adolescents with WS, but also acts as a vital medium for personal expression. During my participant observation-based fieldwork I not only became involved in the musical lifeworlds of the campers, but was also enmeshed in the musicultural world of the music therapists; through this experience, I have gained a greater appreciation for the methods of music therapists and understanding of the fluidity, adaptability, and humanitarianism of MT.
Conclusion: A Call for Interdisciplinary Synergy and Cooperation
As explored in this article, ethnomusicology and music therapy are two distinct fields defined by differing epistemological positions in which music therapists are charged with facilitating change in their clients, while ethnomusicologists are responsible for musically and culturally exploring the lifeways of their interlocutors. Despite these differences, fruitful collaboration and cooperation between these two disciplines is possible. Medical ethnomusicology provides a dialectic solution for blending and negotiating methodologies and theories from both ethnomusicology and music therapy while also adding its own layer of complexities to the two fields.
The previous ethnographic narratives demonstrate that the disciplinary synergy between the ethnomusicology of Williams Syndrome and music therapy provides a compelling case for future collaboration between these two fields. In the case of Whispering Trails, this interdisciplinary cooperation could be further enhanced through greater methodological exchange between medical ethnomusicology’s use of ethnography on the one hand, and therapeutic interventions from music therapy on the other. Such interchange could not only aid individuals and specific populations through musical means, but also heal society through the promotion of accommodation and acceptance for neurodiverse individuals.
My work, and ethnomusicology more broadly, has only begun to scratch the surface of interdisciplinary possibilities, though I am hopeful that such work will continue and become commonplace in the future. I believe that through such collaborations music therapists and (medical) ethnomusicologists can work with their communities to engage in musical advocacy that will ultimately lead to a more just, inclusive, and accommodating society. However, such a society cannot be achieved if we, as scholars, continue to draw exclusionary disciplinary boundaries. Instead, we must take responsibility and advocate for one another through interdisciplinary collaboration. It is my hope that in the future such musical and academic cooperation becomes commonplace.
Notes
[1] First diagnosed by John Cyprian Phipps Williams in 1961, Williams Syndrome is described in medical literature as a rare congenital disorder caused by the deletion of genetic material on the seventh chromosome. As a result of these missing genes, particularly the protein that makes elastin, people with WS frequently have cardiovascular disease that often necessitates open-heart surgery. Many individuals with WS also face challenges in spatial-motor skills, have learning and behavioral disabilities, and experience high levels of anxiety. Additionally, people with WS exhibit a distinct behavioral phenotype characterized by hypersociability and musicality.
[2] Participant-observation is the primary methodology I employed during my fieldwork. This research technique is a standard methodological research technique among ethnomusicologists as well as anthropologists.
[3]Within music therapy, the conceptualization of the competent client focuses on the clients’ capability and agency as an individual, rather than viewing the client as “weak and pathological” (Rolvsjord, 2014).
[4] Despite the positive change that has occurred as a result of the social model of disability, disability studies scholars have begun to question the wisdom of ignoring all things medical, as it often leads to turning a blind eye to the very real medical concerns that affect people with disabilities. Thus, the social model of disability, while important for combating the marginalization of people with disabilities in society, also frequently ignores the very real suffering or difficulties experienced by people with disabilities as a result of their impairments, and in so doing suppresses their voices and experiences. Such criticisms are beginning to emerge in the field of DS, as can be seen from Anna Mollow’s article “’When black women start going on Procaz...’: The politics of race, gender, and emotional distress in Meri Nana-Ama Danquah's Willow Weep for Me” (Mollow, 2013, p. 411-431).
[5] This research was conducted with IRB approval during the summers of 2013-2014 at the Williams Syndrome Association-sponsored camps at Whispering Trails for children, teenagers, and young adults with Williams Syndrome in Grand Rapids, Michigan. All names, narratives, and photographs included in this article have been used with the consent of the individuals.
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