[Special Issue on Music Therapy and Disability Studies]
Bio-political Perspectives on the Expression of People with Disabilities in Music Therapy: Case Examples
By Hiroko Miyake
Abstract
The burgeoning interdisciplinary field of disability studies has understood disability not as medical pathology, but rather as a social and cultural construction. It involves political attempts to move the dividing line between dis/ability, ab/normal, as well as gender, race, or ethnicity, from the perspective of “claiming disability” (Linton, 1998) as a positive political and cultural identity. However, in the music therapy field, disability studies has been generally ignored because music therapy has traditionally been ensconced in a medical model rather than a socio-cultural or political model. In this article, I will discuss the issue of power relationships inherent in music therapy by referring to recent literature in disability studies.
Keywords: disability studies, music therapy, power relations, bio-politics
Inherent Power Relationship in Music Therapy
Recently, disability has become the subject for scholars not only in science and medicine, but also in the humanities and social sciences. The growing field of disability studies offers a sociopolitical analysis of disability, focusing on social and cultural constructions of disability, and shifting our attention from biology to culture (Straus, 2011, p. 4). Music therapy, however, has traditionally been strongly linked with the medical model in which the dominating idea is that music therapists work with individuals and their pathologies, often in clinical settings. Under these circumstances, therapists may rely on the power inherent in their professional status when building a relationship with the client. Community music therapy is an approach which aims to evade such power relationships (Stige & Aarø, 2012), and some music therapists have taken steps toward developing anti-oppressive practices (Baines, 2013). The theories underpinning community music therapy are consistent with a socio-cultural model of disability.
However, in order to open the field of music therapy up to society more generally, community music therapy is not sufficient if the main aim is merely to move musical activities from clinical settings to communal settings. Simply encouraging the social participation of people with disabilities will not change the boundaries that divide people across ability/disability, health/disease, normal/abnormal, majority/minority binaries. These boundaries do not exist somewhere in the society as fixed entities. Rather, they have been internalized by way of our sense of value, and performed through the interaction, for example, between the client and the therapist. As Susan Hadley points out, as music therapists we live in societies in which we are shaped by the subjugating narratives of Eurocentricity, heterosexism, capitalism, psychiatry, psychology, and medicine (Hadley, 2013). That is, our own behavior within the context of our daily music therapy sessions risks supporting the above mentioned dividing boundaries and sustaining unequal power relationships. To challenge this problem, it is necessary to examine how these boundaries are shaped in society and how they are performed in the field of music therapy.
Bio-politics and Music Therapy
In this section, I would like to briefly discuss the mechanisms of power which regulate relationships in the field of music therapy, connecting this to the concept of bio-politics as coined by Michel Foucault (1990).
According to Foucault, bio-power is a style of government that influences all aspects of life in the modern age. Bio-power has been developed along the following two axes, discipline (of the body) and bio-politics (management of the population). The former makes a human body docile and disciplinary power is internalized by the individual to behave in a disciplined manner. The latter manages behaviors related to birth, death, reproduction and illness in a population. Bio-power is a technology that incorporates these two sites of power. The human being is controlled both as a species and as an individual.
The function of bio-power is normalization. Take for example the concept of "health." First, the standard of "health," a standard which is based on statistics, is defined. Next, "illness" and "disability" are identified by the degree of deviation from the “norm” and positions people as "patients", "disabled" and "dangerous.” These “deviant” bodies are encouraged to strive towards a "better" condition through rehabilitation or treatment, sometimes even by institutionalization. Bio-power is located within society, in the home, school, office, hospital and so on. The regime of bio-power is closely intertwined with and shaped by medical-scientific knowledge, social interaction of people, and social-cultural-economic-political structures in society.
Then, what is the musical-therapeutic norm functioning as bio-power in the field of music therapy? It seems to be related to the concept of “musical communication” in music therapy. In modern music therapy, it is common to find therapeutic meanings and value of human existence in the communicative nature of music. Of course, I would not deny it is important for developing relationships with clients in music therapy. However, I think that “the regime of communication=music” ―that is, the imposition of a certain character of communication through musical interaction― is a problematic assumption. I would like to discuss further the concept of communicative musicality (Malloch & Trevarthen 2009), which is often cited as a biological basis of musical interaction in music therapy. Within the conceptual framework of communicative musicality, studies of early infant-mother communication show noticeable patterns of timing, pulse, voice timbre, and gesture. As the multimodal exchange is repeated rhythmically, shared narratives of expression and intention are generated. This musical attribute of “proto-conversation” is regarded to be based on an innate human capacity to share meaning with others.
However, what if we apply this theory as a standardized “norm” into musical expression of Autistic people, for instance? In this regard, this kind of music therapy intervention seems to be a presupposed form of "normal" communication that depends on “the model” of language communication in Western society. Here, the musical structure to be shared is set by the music therapist in advance, and the client’s responses are required to fit within it. One might argue that this is a form of manipulation of the client’s life within presupposed sets of procedures: setting the form of "normal" communication; measuring the “deviance” of the musical expression of the client; and, directing the client towards what "he/she should be." For this form of manipulation to take place, assumptions from various fields are combined: communicative musicality as the biological basis of human communication capacity; criteria for autism diagnosis being impaired social interaction and verbal and non-verbal communication; the functions of music such as dominant-tonic structure and its emotional quality, and so on. In fact, these assumptions not only impact Autistic people, but also people with mental health conditions, people with developmental delays, people with dementia, patients in a coma, in fact many of the clients that we encounter who are also regarded as people who have difficulties with "normal" communication.
Cultural Perspectives on the Musical Expression of People with Disabilities
How should a client’s musical expressions be received, respected, and shared in the community? I think the client’s musical expressions should be regarded as one would any other multi-cultural encounter in which expressions of the client’s worldview and ways of interacting with others are interwoven. Again taking the example of autism, many Autistic people advocate for the recognition that they have their own distinctive ways of being, including cultural and musical expressions (Headlam, 2006). To understand the client’s musical expression from this perspective, it is helpful to refer to phenomenological studies of the experiences of people with disabilities, articles by people with disabilities, and from the field of disability studies.
On the one hand, in Japan, generally speaking, studies on disability are not yet sufficiently developed. On the other hand, a radical discussion on disability based on phenomenological inquiry is emerging (Nishimura, 2001; Murakami, 2008; Ars Vivendi (Seizon-gaku in Japanese: http://www.ritsumei-arsvi.org/en/); Tojisha-Kenkyu: http://bethel-net.jp/bethel-e.html). Japanese philosopher Yasuhiko Murakami, for example, has phenomenologically explored how Autistic people experience the world (Murakami, 2008). He assumes that the repetitive behavior typical to the Autistic person, in which the same sensory input is repetitively elicited, can be seen not as an index of defect or disability, but as a pleasurable and self-sufficient experience. According to Murakami, the mode of experience that resonates with their sensory impressions is probably the starting point of the world experience of Autistic children. In this experience, both self and others are indistinct; the objectivity and cultural meanings of things are lost; and the child derives a feeling of comfort from the color, sound, pattern, and texture of the things, in a kind of unification with those things. One can find other examples in literature by Autistic people that describes this experience as an aesthetic one. For example, Japanese Autistic adolescent Naoki Higashida writes of his auditory experience as follows:
When I heard the first buzzing of cicadas in this summer, I was surprised by the unfamiliar sound. But I never thought“what is that sound?”or “where does it come from?”Just listening to it the whole of myself became ears; the sound resonated and echoed in my head. I forgot everything and concentrated entirely on listening to the buzzing. At times like this, I feel unspeakably blissful, because I felt as if I was becoming a cicada buzzing. It is a precious time for me－although I am unable to communicate it well with other people, it makes me sympathize with other living things and I feel alive on earth. (Higashida 2012, pp. 132-133)
Encountering a Different Culture/Mode of Life
The consideration of these perspectives should be central in terms of how clients and therapists collaborate and co-create a common time-space, although their cultures and musicality may be so different. Murakami points out that Neurologically Typical (NT) people can reach this experience by bracketing their given cultural meanings, such as language and human relationships. In order to provide a clue for how to go about doing this, I would like to bring in an example that Japanese composer Makoto Nomura[1] has written in an essay about his own collaborative music practices. The example is about his experience when he improvised with three musicians, each from a different musical background. It was in the mountains of Ponjong in Indonesia.
At first, I hesitated to play my keyboard-harmonica very much. It was tuned to an equally tempered scale in the Western musical style, while the other musicians had differently tuned instruments, using Javanese- and Thai-style scales. I felt that every note I played didn’t fit for them. It was a continuing process of trial and error. However, to make music is to experience sounds through all five senses. Therefore, I tried to fully feel the sounds with all my senses, without worrying about tuning.
The cicadas are singing ji-wan, ji-wan, which is a quite different sound from the one I know in Japan. The fragrant breeze is blowing; the trees are all rustling. I am playing not only with Anan and Sbowo [the co-players] but also with the cicadas, winds, and all the things existing there.[…] I face all the sounds in a neutral manner without labeling them. There is a sound. There are various resounding sounds. Feeling something inspiring from there, I got an impulse to emit a sound. And I make a sound. That is all I needed to do.
Gradually I was liberated from my institutionalized ears and became able to play the keyboard-harmonica without having to worry about tuning. I continued to dialogue with everything, such as winds, leaves, stones, rice fields, water in irrigation canals, and so on (Nomura, 2009).
This example suggests that there are three phases we need to experience in order to bracket our own given cultural meanings and to co-experience the subjective reality of lived experiences of others; to encounter a different form of life, to sense the different form of life, to link different forms of life. In the following section, I would like to describe my own case examples from the standpoint of these three phases, supporting the concept of biopolitical perspectives on music therapy.
Meeting with the Other Life: Two Case Examples
Shota
Shota is a 13-year-old boy with severe multiple disabilities (visual, intellectual, and physical). He was born with Dandy-Walker syndrome, resulting in congenital brain malformations and concomitant hydrocephalus (increased fluid in the brain). He likes to be around people, but because of his disabilities, he has had limited opportunities to develop his play and communication skills. He started music therapy at the age of five. I, as a music therapist, met Shota when he was 12 years old.
To encounter a different form of life: the “No” world of Shota When I met Shota he commonly used negative phrases, such as “No!,” “The end!,” “(I) don’t wanna do that!” At first I could not understand his intention, since I assumed that his words were just a sign of rejection. But soon I began to notice that these words could also be an impulsive and habitual reaction that occurred regardless of the situation. One day, when Shota said “No,” the co-therapist immediately sang an improvised song of “No.” Shota then laughed out loud and said “No” over and over again. It was the first time that the word “No” was taken seriously as his own expression. After that moment, we realized the richness of his inner world being expressed when he said “No.” “No” in the world of Shota meant “Relate to me!”; “Listen to me”; “I’m worried. Stop your playing and change to another tune.”; “I’m left behind. Please play more slowly”; “OK, I feel fully satisfied. Let’s go to next activity.”; “Funny”; “Love you!”; and so on.
To sense the different form of life: the piano world of Shota At the same time as we recognized the “No” world of Shota, I became aware of Shota’s own playing style on the piano. Usually Shota played glissando from the bottom to the top of the keyboard at his left arm's length and then, played a glissando back to the bottom. I understood a sequence of sound－from bottom to top, back to bottom－as the basic structure of his playing. I participated in his playing by imagining that we were co-composers of our piano tune. After a brief improvisational interaction like a musical scribble between us, he played back to the bottom, and said “The end!” approvingly.
In this instance, the basic structure of his playing seemed to be derived from his visual disability. Because he cannot see the whole shape of the piano, he seems to feel the piano through the “touch” of the keys, the “sounds” heard as different pitches, and the “width” of his reach. He expresses his own sense of body being afforded by the piano: that can be regarded as the piano world for Shota. In this situation, his visual disability functions not as a “handicap,” but is utilized as a resource of his musical expression. Through the musical interaction with Shota, I was gradually able to sense how he felt the situation and perceived the world, as well as my own.
To link different forms of life: playing in the band Recently, Shota has begun to express English words and fluently says “Hello,” “How are you?,” “I love you,” and so on. So, we have started to sing improvised songs in English. This activity has helped him to develop skills needed to play in a band. He performs as the lead vocalist with his expressive voice, while the music therapists play the guitar and the piano. Sometimes his grandfather joins us with percussion instruments. His ability as a singer has become recognized among members of his family and his school teachers. His mother sings her favorite popular songs with him and sometimes they go to Karaoke. At the school festival, he sang “I just called to say I love you” by Stevie Wonder, as the main vocalist. In this way, his singing has created new ways of making connections and communicating with others.
Naoya
Naoya was diagnosed with Adrenoleukodystrophy (ALD)[2] at the age of 11. As the disease rapidly progressed, communication, in a general sense, with Naoya became difficult. Currently, Naoya is in close to a vegetative state, in that he seems to have no reaction to stimuli from the outside world. But I have tried to consider his breath, arousal level, muscle tone, mumbling, eye blinking, and subtle movement of the body as his expression and to make music together with him and his family.
To encounter a different form of life: the bare sound of a bird’s whistle In the earlier sessions, Naoya hammered the piano keys roughly and impatiently. I wanted to introduce a constructive and organized activity for him. One day, while playing the piano, I started to move my body as one might in a gymnastic exercise in a regular rhythm. As he seemed to follow me for a while, I expected that he would be willing to develop this activity. However, during a brief pause, he blew a vivid bird whistle at me. Listening to the intensive quality of the sound, I hesitated to continue my playing.
The sound of the whistle made me realize that I was under the control of my own tacit premise of understanding music therapy. I unconsciously intended to “develop” the client’s expression “musically” or “therapeutically” from a one-sided point of view. In my interpretation, Naoya’s impatient playing of the piano represented a state of “disorder”, whereas, our gymnastic movements in a regular rhythm represented a state of “order.” However, the sound of his bird whistle was, for me, “the bare sound”. It had a kind of strong intentionality which was something that I did not expect. As a matter of fact, this episode turned out to be the starting point for our new musical-therapeutic relationship.
To sense the different form of life: Naoya’s life as an art of living After that, Naoya’s medical condition deteriorated towards a vegetative state. We shifted to bedside sessions at his home. I interpreted his breath, arousal level, mumbling, eye blinking, eye and body movement, muscle tone as his expression, and improvised accordingly with him.
Now, from a bio-medical perspective, any movement he makes are regarded merely as a physical reflex because Naoya is assumed to be unable to perceive or communicate with his environment, due to his illness. Thus, he is cut off from his social connections as far as the diagnosis goes. However, there are some studies that indicate that the patient in a vegetative state is more than just biologically-alive (For example Nishimura, 2001; Herkenrath, 2005). For example, German music therapist Herkenrath deems that the subtle physical movements of coma patients comprise not just simple physical reflexes, but reactions in response to actions. He assumes that a coma patient is a living person in possession of his/ her most essential characteristics, consciousness, and who lives a form of life that for him/her is normal although the music therapist is unable to perceive or understand it (Herkenrath, 2005, p. 148). In line with Herkenrath, Naoya’s physical reactions seemed to comprise not just simple physical reflexes, but reactions in response to action. By relating Naoya’s expression as his active reaction, we can see him not merely as a passive patient, but as a living existence in a specific form of life. Herkenrath calls it an art of living. To regard a client’s life as an art of living means that the client and the therapist respond to each other as expressive subjects, which leads them to collaboration and cooperation in the music making process.
To link different forms of life: making picture-story show In one session, Naoya, his mother, his cousins and their parents, and I made an original picture-story as one of the musical activities[3]. In this activity, we arranged several photos of Naoya from his infancy to the present day and pictures drawn by his mother and his cousins while Naoya and the therapist improvised music.
Shuffling these photos and pictures and turning over one by one, we create a fictional story where Naoya appeared as a main character. Each time a photo was turned over, the family members cheered, and talked about the events and the memories in the photo. The story consisted of a mixture of new fictional episodes and actual memories, ornamented by the family members’ favorite phrases.
The chosen title of the story was: “The true identity of me [Naoya]”. We made it into a humorous song with the lyric as follows:
The true identity of me 僕の本当の姿
I am busy I am busy 僕は忙しい 僕は忙しい
A mission in Hamana-lake 浜名湖でミッション
I am a sniper to deprive the tomatoes in the field トマトを奪うスナイパー
Feeding the baby and watering the flowers when I get home 帰ってきたら ミルクをあげて お花に水やり
“The truth is, I am a Chon-mage (topknot) prince!” 「でも、本当は、ぼくは殿様なんだ！」
Make everyone happy みんなを幸せに
Be happy with everyone みんなで幸せに
“Here ends the lesson！”「これにて、一件落着！」
This original picture-story is composed of a variety of heterogeneous modes of expression, such as forms of life of Naoya and the family members, the memories of the family, free associations to pictures and photos, musical ideas from the participants and the therapist. Thus, this activity was implemented to link different forms of life (hopefully!).
In the process of story-creating, recalling the actual story of the family and telling a new story of the family occurred simultaneously. Geographer Karen E. Till calls this kind of activity memory-work. In her example, those who are in the difficult process of working through the losses and traumas resulting from (revisiting) past violence and injustice, create a new story imagining more socially just futures (Till, 2008, p. 110). In this sense, the process of story-creating with Naoya and his family members can be considered as a kind of memory-work on disease. In a way, it was a ritual in the family community that affirmed Naoya’s form of life as “the true identity” to make everyone happy and to confirm a willingness to “be happy with everyone”. For his family, “the true identity of Naoya” is still the big brother caring for the family.
Towards Diverse Forms of Communication and Life
In this article, I have discussed the issue of power relations in the field of music therapy as it relates to the concept of bio-politics. As I mentioned above, there is no external utopia where the music therapist can escape from the regime of bio-power either in the bio-medical or in the socio-cultural model. Where possible, we encounter the living existence of the client and co-create a new style of living together with those who surround the client. Foucault (1992) calls such a practice of creating a new style of living arts of existence (life as a work of art). He defines arts of existence or techniques of the self as 'those reflective and voluntary practices by which humans not only set themselves rules of conduct, but seek to transform themselves, to change themselves in their singular being, and to make their life into an oeuvre that carries certain aesthetic values and meets certain stylistic criteria’(Focault, 1992, pp. 10-11). In order to do this, the music therapist must put him/herself at a critical point beyond professional identity, and tell his/her own experiences as an individual. This is different from a narrative of “therapy”; it demands that we take off our “professional” armor and reconsider the musical process resulting from the subjective reality of his/her own sensory experience. It is then a small step to change “the regime of communication=music” in the direction of diverse forms of communication and life.
Notes
[1] Nomura has collaborated with various populations of both musicians and non-musicians, including elderly people, children, people with disabilities, and others. See http://d.hatena.ne.jp/makotonomura/about
[2] According to National Institute of Neurological Disorder and Stroke (http://www.ninds.nih.gov/index.htm) , ALD is a genetic disorder called the leukodystrophies that cause damage to the myelin sheath, an insulating membrane that surrounds nerve cells in the brain. The most common symptoms are usually behavioral changes such as abnormal withdrawal or aggression, poor memory, and poor school performance. Other symptoms include visual loss, learning disabilities, seizures, poorly articulated speech, difficulty swallowing, deafness, disturbances of gait and coordination, fatigue, intermittent vomiting, increased skin pigmentation, and progressive dementia. In the most severe case, patients reach like a vegetative state within 1 to several years after the onset.
[3] How to make the original picture-story is that; First, shuffle the pictures and/or the photos; Next, turn the pictures one by one and co-create a story; Then, co-compose background music and the theme song of the story; Finally, Perform the entire story by all the participants.
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