[Editorial]

Shifting Frames: Are We Really Embracing Human Diversities?

By Susan Hadley

When I was finishing up my undergraduate degree in music therapy, I was very fortunate to have my final clinical placement under the supervision of Jane Edwards. For the first couple of weeks, Jane had me spend time with people in different professions, the aim being to expose me to the daily experiences of other professionals. She stressed the importance of my spending time with the nursing staff. I remember discussing with Jane how the nursing staff is overworked and underappreciated and that we need to take the time to understand what they are required to do, to show our concern for them, and help out where we can, rather than demanding more of them (for instance, when we ask them to get people to our groups by a certain time). This approach of understanding others by spending quality time with them and getting to know them and their experiences on a personal level has continued into other parts of my life.

Learning to See the Whole Person

When I first gained employment after finishing my bachelor’s degree, I had a number of part-time jobs. At one residential facility for people with physical impairments, I was employed part time as a music therapist, part time as a physiotherapy assistant, and part time as a nursing assistant/personal care aide. In addition, I didn’t limit my interactions with them to within the residential facility, rather I would spend quality time outside the facility with some of the residents who were around my age. Some of the residents in this facility commented that I knew them better than most of the other people who worked there because I got to see all sides of them—I helped them with daily tasks like showering, going to the toilet, assisting them when they were getting dressed, when they were transferring from bed to chair and vice versa, or when they were eating meals. I also helped them exercise their muscles in the pool; I discussed important emotional issues with them including issues related to relationships, sexual intimacy, and death; I performed music with them; and, I went out and watched movies with them and drank beer with them at the pub. Most people, they said, only saw one side of them. While I got to know each of them better as individuals through my varied roles, this did not shift my epistemological framework from understanding them as people with disabilities (as in a medicalized notion of disability) to an epistemological framework of understanding them as disabled people, disabled by social, political, and environmental factors, even while I saw all the ways in which this happened.

Meeting Caroline: Seeing Through her Eyes

While working at this facility, I met Caroline, a woman who was to become one of my dearest friends in life. I remember the first day I was asked to work with her as if it was only yesterday. All of the residents at this facility were assigned particular aides who would work with them each day, except Caroline. Caroline selected her personal care aides. This was an unspoken practice, but one of which we were all aware. I was approached by Sharon, her main personal care aide. It was made clear to me that this was, in fact, an honor and meant that I had gained Caroline’s trust. I recall the weight of the responsibility I then felt. It is strange that this feeling was so pronounced even though I had worked with so many of the other residents. What message were we sending the residents by randomly assigning people to work with them, rather than having them decide who they wanted to care for them each day? Was this practice invalidating? I began to think more deeply about what Caroline was demanding and why. I could see that as a result of Caroline’s act of agency she was highly respected by both the residents and the people who worked there. I learned so much through my relationship with Caroline—about her, about me, and so much more. For example, Caroline taught me you should not take this work for granted, that you are in some ways an extension of the person you are working with. I do not mean this in terms of functioning as a kind of prosthetic body. Rather, I began to see myself in her, to take up a different way of thinking about the relational dynamics between us. I began to think about how humiliated I would feel if so many people saw me naked, had to attend to my bodily functions, had to get me in a comfortable position so that I could sleep well. Personally, I would want my dignity respected; indeed, I would demand it. How would I feel if someone was moving me in a rough manner? For example, when I was lifting her in a sling I was always so worried that something would go wrong and that I would cause her immense pain. Sometimes when I was positioning her, I made a mistake and caused her discomfort and I could see her trying to deal with that with patience and with dignity. I became really aware of how important it was to treat and respect her body as I would my own. She instilled in me the significance of showing profound respect toward the person with whom you are working. This was no longer merely a job, but an intimate partnership of mutual giving, learning, and growth. And it was these lessons that transferred over into my relationships with other residents.

Caroline taught me how important trust was in this relationship. She was trusting me to touch her and move her in ways that she could not do without assistance. Caroline took time to get to know people and to decide who she would let into her personal circle. She then took this circle with her when she moved into the community with two of the other residents, Melanie and Michael. Spending a great deal of quality time with these three individuals, I came to see things through their eyes more and more clearly in ways that I could not have seen through my eyes alone. For example, one day, a woman knocked on the door asking whether we had some extra sugar that she could use. She then flippantly explained that she worked next door for “Alvin, the Quad.” After she left, there was a hilarious, yet caustic, exchange about how non-disabled individuals labeled people with impairments. They even created names for themselves such as “Michael the Biff” (due to his spina bifida); “Melanie the Imperfecta” (due to her osteogenesis imperfecta); and, “Caroline the Atrophied” (due to her spinal muscular atrophy). On another occasion I became painfully aware of how I saw the world through “non-disabled” eyes. I was helping Melanie rearrange her room because it was rather small and she wanted to utilize the space more effectively. As I told her my “perfect” solution, she just looked at me with an “are you serious?” kind of look. I must have appeared puzzled and she said, “And how will I get my clothes out?” I said, “Easy” and proceeded to show her. At last it dawned on me that I had not taken into account the space that would be needed in order for her to negotiate her wheelchair within that space. It was a very important moment for me, seeing how my understanding of the world was so incredibly shaped by a normative framework, one that took for granted assumptions about how “all bodies” move through space. I also witnessed countless times how people invalidated these friends of mine by asking me what it was that they wanted. Traveling with them on trains and around different shopping centers and restaurants, what I would now call sites of “normative space,” I began to notice how inaccessible so many places are if you have physical impairments. I also witnessed how insulting the most well-intentioned comments and gestures could be.

Questioning my Understanding of Disability

So, just over 10 years ago when I first learned about disability studies[1] from my friend and colleague Cindy LaCom (director of women’s and gender studies at Slippery Rock University), this critical area of inquiry spoke to me on a very personal level. Resonating with my readings about the social construction of gender and race, and the interrelationship of the personal and the political, disability studies opened my eyes to a totally new way of understanding disability, not as a problem residing in an individual, but as a problem residing in our collective societal understanding of norms and “deviance,” and our lack of acceptance (and, at times, outward rejection) of human diversity. My frame was beginning to shift.

And then I met Iris Marion Young in November 2005. She was giving a lecture on “Structural Injustice and the Politics of Difference.” After hearing her talk, I was further opened up to critiquing normative structures. She discussed how a politics of difference asserts that our dominant narratives, which include how we negotiate relations of power in terms of gender, race, sexuality, socio-economics, disability, etc., are centered around a particular and restricted set of ruling norms, norms that usually present themselves as neutral and universal. That is, on Young’s view, there are certain expectations for how people ought to perform certain tasks, expectations of what is normal, and these are standards against which all individuals are judged. These standards structure not just capabilities, but also desires, forms of reasoning, language, values, priorities, work ethic, aesthetic expression and appreciation, etc. In a paper entitled “Ruling Norms and the Politics of Difference: A Comment on Seyla Benhabib,” Young states that “Ruling norms assume, for example, that good workers are available to be on the job by 8:00 a.m. and can stay at work until 5:00 or 6:00. They assume that users of computers are sighted and have dexterous hands, and they assume that political participants can be confident that when they speak their issues and idioms will be understood, if not always receive agreement.”[2] In her talk, Young also discussed how it does not make sense to seek equality in terms of treating all persons according to the same standards and principles, the same set of ruling norms which actually privilege certain kinds of people over others. These ruling norms position various people as “deviant” and “problematic.” She suggested that because humans vary in such a large number of ways, that so too should our standards and principles vary. Such ruling norms are actually dis-abling and dis-advantaging many groups of people who would otherwise not be disabled or disadvantaged. There was a further shift in my frame.

And then I met Simi Linton in October 2008. She was delivering a lecture at Slippery Rock University on Disability Studies. She described how, when hitchhiking from Boston to Washington, DC to protest the Vietnam War, as a result of a car accident, her legs became paralyzed. She shared many experiences that shaped her understanding about what it means to be a Disabled person.[3] As she spoke, I began to feel an important tension between what she was saying about disability and what I had learned in my music therapy training and continued to teach my music therapy students, although I did bring in concepts from disability studies. Linton clearly outlined the difference between a medical definition of disability and a social, cultural, and political definition of disability. She critically discussed the concept of ableism as an insidious form of oppression towards disabled people. She talked about how so many health care professionals desire to “help” disabled people and yet they are invested in the perpetuation of a conception of disability as pathology in an individual. This brings to mind a quote from the National Disability Arts Forum which states, “There is a joke amongst Disabled people that non-Disabled people listen to music, do the gardening, hold down jobs, but Disabled people do music therapy, horticultural therapy, occupational therapy. Where Disabled people are involved, almost every activity of life seems to have to be justified in terms of its medical and therapeutic benefits.”[4]

Questioning My Understanding of Therapy

I began to feel uneasy and wondered about how what Simi Linton talked about could resonate so strongly with me and yet I wanted to keep my understanding of my identity as a music therapist. I felt sure there was a way, but I was having trouble ascertaining what that would look like. So, after the talk, I went up to meet her and while we were talking I shared with her that I was a music therapist. I broached the dilemma that I was feeling and asked her what the role of music therapy might look like when working with Disabled people, one that would be consistent with a disability studies perspective. I was hoping against all hope that she would take the hard work away from me and provide me with an easy answer, one that I could implement immediately in my teaching. I had fallen into the trap of the oppressor asking the oppressed to find the solution for the oppressor to stop oppressing. She smiled at me and said that I was asking the wrong person. She told me that it was difficult for her to think of a positive role for therapy with Disabled people qua Disabled people. She said that it was something I would have to work out for myself.

Questioning My Role as an Educator

Since then, I have really struggled to understand my role as a music therapy educator. I began to worry that I was actually training my students, even if inadvertently, to be oppressors who thought they were liberators.  I thought about the therapeutic relationship being in a way parasitic, even though that is the last thing we, as music therapists, would want. I saw parallels between my quest to understand how my whiteness functions within white supremacy and my quest to understand how my ableness functions within an ableist society. It is not that I have given up on my belief that people can grow and change through therapeutic relationships. Rather, I have begun to think critically and ethically about how we define music therapy in relation to a medical model of disability that views impairments as conditions which need to be overcome, reduced, brought closer to the “ruling norms.” I have begun to question with whom we should be working and for what aims. I have begun to think critically about the relationship of power between the therapist and the person seeking therapy. I have thought more about my training in systems theory and have moved further away from thinking about trying to change individuals to changing systems. But in many ways I have felt stifled with respect to how this translates into my actual teaching and my pedagogy. In the U.S., we have content areas and competencies which “must” be taught if our students are to be successful in their board certification examinations. Our curriculum is integrally tied into a medical model of health and disability. It has been a struggle for me to find an authentic space within the larger normative framework that generally structures music therapy education and training. While I can point to feminist perspectives, community music therapy, and anti-oppressive practice as perspectives which are aligned with those espoused in disability studies, there are so many ways in which our required coursework reinscribes ableist principles and norms. This continues to be an internal struggle for me. In our practices, in our professions, and in our personal lives, are we as music therapists really embracing human diversities? Or are we trying to shape people in ways that are more “palatable” for the majority in our society?

I understand Simi Linton’s reluctance to provide an answer to my question about the possible role that music therapy can play in the lives of Disabled people. Perhaps I was focusing on the wrong question. Maybe a more appropriate question would have been (and is) what is the role that music therapy can play in the life of any person, with or without obvious impairments? Perhaps I needed to ask, in what ways are we, as music therapists, contributing to the subjugation of Disabled people? In what ways are we as music therapists being elevated in society because we are working with marginalized groups? Perhaps I needed to ask in what ways can music therapy be implemented such that it can become abling rather than dis-abling? In what ways can we, as music therapists, work towards social, systemic change? Perhaps we should be working to change the values and practices of the “non-disabled,” especially in terms of increasing awareness about ableism, and the ways that ableism grants advantages to certain kinds of humans (those within a set of norms) over others (which “deviate” in particular ways from these norms).

As I further critically engaged the literature of disability studies, I came across a lot of rich concepts which I continue to explore and which continues to take me into areas into which I have not yet seriously delved. For example, I am excited about the literature which explores the intersectionality of disability studies, feminism, and critical race theory which has been really groundbreaking.[5] And I recently came across an article by Colin Cameron entitled, “Tragic but brave or just crips with chips? Songs and their lyrics in the Disability Arts Movement in Britain,”[6] which will at once make you laugh and cringe with its raw honesty. Here was an article even closer to home as it was linking songwriting with disability studies. This then led me to discover disability arts online[7] and the music and disability studies blog,[8] and works by Joseph Lerner, Alex Lubert, and Joseph Straus.[9]

Given all of this, in recent years, a major focus of my teaching and scholarship has been exploring questions such as the ones I posed above. My aim has been to gain a critical awareness of these issues for myself, and to share this awareness with my students and colleagues. And as part of this process I decided that it was important to explore these issues in a boarder forum. This was the impetus for this special issue. In discussing this idea with my co-editors, Katrina McFerran and Brynjulf Stige, we agreed that it was a topic best explored through interdisciplinary dialogue. I wanted to engage the views of those both within and outside of music therapy in terms of how music therapy is perceived and how it could be reimagined in even more liberating ways. In this way, I take my cue from Derald Wing Sue who asks, “if you want to understand oppression, should you ask the oppressor or the oppressed? … Studies support the contention that the most accurate assessment of bias comes not from those who enjoy the privilege of power, but from those who are most disempowered.”[10] So, it seemed important to gain perspectives from scholars in disability studies, those of Disabled people (hence, disrupting forms of epistemological silencing), as well as those within music therapy who are grappling with these issues.

An Exciting Interdisciplinary Dialogue Ensues

This special issue of Voices is the result of this exploration. Within this issue we have articles by people in the following fields: ethnomusicology (Michael Bakan), musicology and music education (Samantha Bassler), piano performance (Stefan Honisch), music theory (Joseph Straus), music therapy (Maren Metell, Hiroko Miyake, Rachel Reed, Daphne Rickson, Randi Rolvsjord), social work (Colin Cameron), and women and gender studies (Cindy LaCom). The issue begins with an article by Cindy LaCom and Rachel Reed who, discussing their own experiences with Crohn’s disease, autism and multiple sclerosis, raise questions about how the illusion of (st)able bodies can reinforce hierarchies (between therapist/client, teacher/student, helper/helped, ablebodied/disabled), especially when the person with the “power” does not have to disclose or discuss the instability of her own body. Along similar lines, Samantha Bassler explores invisible illness vis-a-vis disability and the body and suggests a way for working with persons living with invisible illness that merges music therapy and disability studies perspectives. Following this article, Randi Rolvsjord examines the interdisciplinary discourse of mental health and mental healthcare in terms of various binaries that position the client as weak and passive and in need of help and the therapist as strong, active, and an expert in helping. Rolvsjord discusses the notion of competent clients, and openly questions whether this perspective in fact still reinforces ableist stereotypes and assumptions. Next, Daphne Rickson provides a broad overview of medical, social, cultural and affirmative models of disability in her article and then follows this with a vignette describing music therapists and young people with intellectual disability engaged in a music research project which was grounded in the affirmative approach. Joseph Straus’ article follows with his contention that music therapy has positioned itself squarely within the medical model of disability, and offers music as a source of normalization, remediation, and therapy toward a possible “cure.” He suggests that instead of seeking to normalize or remediate the Disabled in general, and Autistic people specifically, music therapy might instead offer to enhance particular “indigenous” cultures (for example Autistic culture) in an atmosphere of mutual respect through mutual music-making. Michael Bakan provides an example of such an approach by sharing his work on the ethnomusicology of autism. Also drawing on an earlier work of Straus’ (Extraordinary measures: Disability in music) and a response to this work by music therapist Giorgos Tsiris, Stefan Honisch searches for common ground between disability studies in music and music therapy. He suggests that this middle ground can be found in music therapy as performance. In contrast to Honisch, Colin Cameron shares his pessimism about finding common ground between disability studies perspectives and music therapy because of music therapy’s continued desire to be accepted by the medical establishment. He suggests that rather than music therapy positioning itself as a profession allied to medicine, it would be far more in line with a disability studies perspective if it realigned itself as a profession allied to the community. In line with this, Maren Metell suggests that the practice of community music therapy illustrates how music therapy can complement disability studies, by which she means arenas of social participation in culture. Hiroko Miyake also acknowledges that the theories underpinning community music therapy are consistent with a socio-cultural model of disability, yet she suggests that 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. Using Michel Foucault’s theory of biopower, Miyake examines how these boundaries are shaped in society and how they are performed in the field of music therapy.

For some readers, the concepts expressed in this issue may not be easy to digest. As I say to my students, when hearing perspectives which challenge our view of ourselves, it is easy to try to distance ourselves from what is being expressed. It is not unusual to hear a voice in our head saying, “I don’t do that.” Or “We are not all like that.” Or “That is a really limited view of music therapy.” Or a more self-congratulatory stance that says, “Yes, I do that already.” Or “I have always thought like this.” It is much harder to take it in and let it digest, to try to understand the depth of the implications in the ideas being expressed and the challenges to our identities as good moral people. And I think that because we care so deeply about human beings on a wide continuum, we do not want to consider ourselves as part of an oppressive structure or as contributing to that oppressive structure. It is difficult to sit in the discomfort. It takes courage, strength, and humility.

Readers who are well-versed in person-first language will find some of the terminology used in the articles jarring or may even feel that it is outdated. One of the hallmarks of disability studies has been to reclaim language[11] and to use it for specific purposes in specific ways. Some groups of people do not view themselves as people with a disability. Rather, they view themselves as being-in-the-world in a particular way, one that challenges and defies normative hierarchies, or that they have particular social and political experiences through which they define themselves as belonging to a certain group. Thus, they have reclaimed themselves as Autistic people, the Deaf community, the Disabled. Some argue that person-first language in some ways suggests that the disability is separate from the person, not an integral part of the person, or even that the add-on indicates something bad or negative about the person, certainly something deviating from the norm. Thus, many authors have not used person-first language, but respected the language often preferred by self-advocates. This, of course, is not the choice of all Disabled people or people with disabilities, or of all of the authors in this issue.

I want to thank all the authors for their contributions to this important issue. Each has grappled with this topic and the result is a profound and rich interdisciplinary dialogue, one that opens up an exciting space in all of our related fields. There were several other authors who were going to contribute, who for one reason or another were not able to complete their submissions in the timeframe that we had. I certainly hope that they will submit articles in future issues and keep this dialogue alive. Finally, I would like to thank Jane Edwards, Juanita Eslava-Mejia, Katrina McFerran, Helen Oosthuizen, Rune Rolvsjord, Melody Schwantes, and Michael Viega for their help with this issue, and Cindy LaCom and George Yancy for their helpful suggestions regarding this editorial.

Notes

[1] Lennard Davis (2006) discusses the emergence of disability studies in his introduction to The Disability Studies Reader (Second Edition), New York: Routledge. He states:

Now the impetus to recognize the level of oppression, both overt and by marginalization, is being organized by people with disabilities and other interested parties. The exciting thing about disability studies is that it is both an academic field of inquiry and an area of political activity. The act of assembling a body of knowledge owned by the disability community as opposed to one written about that community by "normals" is part of an ongoing process that includes political actions involving the classroom, the workplace, the courts, the legislature, the media, and so on. (p.xv)

[2] Iris Marion Young (1999). Ruling Norms and the politics of difference: A comment on Seyla Benhabib, Yale Journal of Criticism 12, no. 2: 415–21.

[3] I highly recommend reading Simi Linton’s autobiography, My Body Politic: A Memoir, Ann Arbor, MI: The University of Michigan Press, 2006.

[4] Liz Crow (1992). On Our Terms, Women’s Art, 47, July/August 1992. A Women Artists Slide Library Publication. Quote on p.1.

[5] For examples, see chapters by Adrienne Asch and Rosemarie Garland-Thomson in Bonnie G. Smith & Beth Hutchison (Eds) Gendering Disability, New Brunswick, NJ: Rutgers University Press, 2001; and the chapter by Nirmala Erevelles in Kim Q. Hall (Ed) Feminist Disability Studies, Bloomington, IN: Indiana University Press, 2011).

[6] Colin Cameron (2009). Tragic but brave or just crips with chips? Songs and their lyrics in the Disability Arts Movement in Britain, Popular Music, 28(3), 381–396, doi:10.1017/S0261143009990122

[7] See Disability Arts Online: http://www.disabilityartsonline.org.uk/

[8] See The Official Blog of Music and Disability Studies at the American Musicological Society and the Society for Music Theory: http://musicdisabilitystudies.wordpress.com/

[9] See the following texts: Alex Lubert (2011). Music, Disability, and Society, Philadelphia, PA: Temple University Press; Joseph N. Straus, (2011). Extraordinary Measures: Disability in Music. New York: Oxford University Press; and, Neil Lerner & Joseph Straus (2006) Sounding Off: Theorizing Disability in Music. London and New York: Routledge.

[10] Derald Wing Sue (2003). Overcoming Our Racism: The Journey to Liberation. San Fransisco: Jossey-Bass, p. 122.

[11] For a discussion on Reclaiming Disability, see Simi Linton (1998). Claiming Disability: Knowledge and Identity. New York: New York University Press.