[Special Issue on Music Therapy and Disability Studies]
Destabilizing Bodies, Destabilizing Disciplines: Practicing Liminality in Music Therapy
By Cindy LaCom & Rachel Reed
Abstract
Our project began with a consideration of how disability studies might enrich the practice of music therapy. Originally, we were interested in how a greater awareness of disability issues might help music therapists, especially because of the often medicalized (and arguably pathologized) implications of the terms (“health” and “help”) which define their field and which frame the therapist/client relationship. On these grounds, we argued that greater awareness of the cultural context for such implications might aid the therapist. At the outset, it seemed straightforward enough. But our own unstable embodiments kept disrupting our conversations. The corporeal intransigencies of our bodies as we dealt with the symptoms of Crohn’s disease, autism and multiple sclerosis moved us beyond a critique of disciplinary purity which constructs each field as distinct to an analysis of privilege, power and passing that extends to multiple disciplines and pedagogical practices.
In our paper, we 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 “in charge” does not have to disclose or discuss the instability of her own body. Upon that privilege rests an array of power dynamics, and we believe that a purposeful contemplation of our own embodiment has to be more central to praxis, whether as therapists, scholars, teachers or professionals. To do this, we must be aware not only of others’ but also of our own relationship to disability—socially, culturally, and as a marker of identity and potential (in)access to power.
Keywords: disability studies, music therapy, passing, privilege, abelism
Introduction
This essay is an extension of a conversation that started over a year ago, when we first met in an Introduction to Women’s Studies course that Cindy taught and for which Rachel had enrolled. Though the class focused on gender, Cindy framed gender as intersectional and thus overlapping with other identity categories such as race, ethnicity, and disability. On the first day, Rachel approached Cindy after class and said that she wanted to focus on issues of disability in her writing. Based partially on Cindy’s interest in disability studies, she agreed to Rachel’s proposal. Thus began a dialogue which continues today. In the process, we have challenged each other’s thinking and enriched one another’s concepts of disability, identity, autonomy and embodiment.
We bring different disciplinary perspectives to these issues – Cindy directs a Gender Studies program and has also taught English for over twenty years, while Rachel majors in Music Therapy. Both of us are interested in the slipperiness of boundaries, in points of overlap, intersection, synthesis, and rupture. This is true for us in terms of our own embodiments, but also in terms of disciplinary demarcations. As part of our consideration of disability studies and music therapy, we find ourselves increasingly resistant to academic efforts to fix boundaries and wary of attempts to stabilize both fields. We are interested in questions about why we might be invested in disciplinary purity and what might be gained (or lost) when we call these stabilization efforts into question. Our conversations unsettle fixed concepts of disability and music therapy.
In Claiming Disability: Knowledge and Identity, Simi Linton points out that disability studies serves to correct the medical perspective on disability that has historically dominated cultural understandings by focusing on “not simply the variations that exist in human behavior, appearance, functioning, sensory acuity, and cognitive processing but, more crucially, the meaning we make of those variations” (1998, p. 2, italics ours). In Chapter 6, “Disability Studies/Not Disability Studies,” she expands on this, noting that a “socio-political model . . . provides an epistemological basis for inquiries and actions that could not have been imagined from the restrictive thresholds of the traditional curriculum” and adding that it is “timely to mark this border” (1998, p. 133).
The call for papers for this issue of Voices includes different definitions of music therapy, which are premised upon a process whereby the therapist “helps the client to promote health” and relies upon the therapist addressing the “physical, emotional, cognitive and social needs of individuals” within a context where the therapist is a “credentialed professional who has completed an approved music therapy program.”
As will become clear, our conversation calls into question the groundwork for these definitions and, by extension, the nature of the therapist/client relationship. Engaging embodiment –our own as well as others’ – demands of us a willingness to regularly negotiate complex and potentially difficult waters, and a willingness to do so is especially vital in therapeutic relationships. We do not pretend to have the answers but hope that the issues we raise and the questions we pose encourage readers to question themselves, their relationships to their clients, and their practice of music therapy.
Cindy
When I was twenty-four, I wept when I was told that I had Crohn’s disease, not out of sadness or fear but from a sense of relief that the symptoms I had experienced for ten years had just been legitimated. And though the doctor’s news that the disease was treatable but not curable troubled me, at least something was settled, fixed, real.
But though the diagnosis organized and sanctioned a constellation of symptoms, accepting those symptoms took years. I learned that I have the genetic marker which predisposes me to arthritis and iritis, and both posed ongoing challenges. During some periods, arthritis was so severe that I needed a cane to walk, and I could not get in and out of bed without the help of my partner. On many occasions, I would speak to my body as if it weren’t a part of who I was, berating it, hating it – an exaggeration of a Cartesian mind/body split that reflected my desire to be divorced from this leaky, unreliable, steroid-swollen body. I worked incredibly hard in graduate school to define my self in intellectual and political terms, but an unstable and often explosive body destroyed such efforts, serving as a reminder in messy and often painful ways that my embodiment informed my “self” in myriad and inescapable ways.
In an effort to make sense of my experiences (though I’m not sure I recognized that at the time), I revised the focus of my dissertation, which examined the intersections of maternity and sexuality in British Victorian novels, to include an analysis of infirmity and disability. I focused on a select number of female fictional characters whose disabilities marked them as either hyper-virtuous or, conversely, excessively aberrant. Aware of the shortcomings of my interpretations, struggling to articulate more thoughtfully how and why deviant bodies in nineteenth-century texts made meaning, I was thrilled when, in the fall of 1992, I saw a call for papers for a conference titled, “Discourses of Disability.” At that conference, named by many in the field as the birthplace of disability studies, I found a group of scholars and teachers whose work, like mine, focused primarily on representations of physical disability in literature and film. It felt a bit like coming home.
Since then, the field has expanded to more fully address cognitive and invisible disabilities and to incorporate analysis of disability within varied theoretical contexts (feminist, post-colonial, queer, critical race theories, New Historicist, and post-modern, among others). I have worked personally to integrate illness, disease and the experience of pain within a disability studies framework. Reading David Morris’ The Culture of Pain (1991) gave me a way to see my pain as culturally mediated; Rosemarie Garland Thomson’s Extraordinary Bodies (1997) and Ellen Samuels’ “Critical Divides: Judith Butler’s Body Theory and the Question of Disability” (2011) invited me to make sense of the gendered elements of disability; scholarship by David Mitchell, Tobin Seibers and Robert McGruer gave me some tools to move beyond understanding disability primarily as cultural metaphor and to grapple with what Siebers calls the “new realism” of embodiment (2008) and with the “’distressing corporeality of disablement’” (Price & Shildrick, p. 127, cited in Thomas, 2007); and the memoirs of writers like G. Thomas Couser and Eli Clare reminded me that the experience of disability, though culturally framed, is also exquisitely personal.
And though I continue to struggle to find a balance between an academic and lived understanding of my embodiment, though I have tried to resist succumbing to ableist norms which frame deviant bodies as less than, as lack, I also made strides in securing disability studies (and by extension, my own embodiment) within knowable parameters, within a cohesive framework that understands disability as historically, culturally and economically informed. Thus, though recognizing that meanings of disability change across time and place, I settled into a belief that “disability” has political and social significance which, exceeding individual meanings, provides a structure and grounding for finite but nonetheless important and reliable theoretical axioms.
One such axiom was that abelist biases are still powerful and pervasive. Once, when undergraduate students in a College Writing class read Nancy Mairs’ “On Being A Cripple,” the student group in charge of facilitating discussion (and who had read other pieces to help them parse Mairs’ many points and to raise questions about ablebodied biases) put signs on different parts of the classroom which read, “Multiple Sclerosis,” “Blindness,” “Deafness,” “Developmental Disability,” and “Death.” They then asked their peers, “If you had to choose one, which would you choose?” and asked them to stand under that sign. It was shocking to me (but less so to many of the students) that so many lined up under the sign, “Death.” Still, this exercise lent credence in visually compelling ways to the principle that disabled bodies are not culturally neutral texts.
In that class, we spent weeks breaking down the cultural values that inhere on bodies, reading Lennard Davis’ “Constructing Normalcy” (2006) to better comprehend the historical root of the word “norm” and its current implications, reading selections from Simi Linton’s Claiming Disability for a basic grounding in the work of Disability Studies, and selections from Staring Back: The Disability Experience from the Inside Out (Fries, 1997) to redefine disability in more positive and empowered ways. When I introduced the basic but important concept of “person first” language (i.e. a person with a disability rather than a disabled person),[1] many students “got it” – acknowledged the layers of (usually negative) meanings involved in identifying a person as/by their disability in an ableist society.
I had enough success with this that I replicated an abbreviated version of it in my Intro Women’s Studies course. Eight weeks into the semester, already (or newly) aware of the power of language in a sexist and racist climate, students “got it” much more quickly.
And then Rachel turned in her paper and turned my logic on its head.
Rachel
The very nature of this call for papers implies a fixed definition of disability, and of what a disability studies perspective is. Experiencing disability as an Autistic person, I would once have agreed more completely with the possibility that such fixity was possible. More recently, the perceptual work that used to organize my world and understanding has become unsettled, giving me a different view and understanding of this illusion of stability upon which it seems much of our work as therapists rests. I hope that my experience may serve to illustrate how fixed concepts of disability and disability studies are incompatible with our work as music therapists.
Though I had identified as Autistic prior to taking Cindy’s class, the questions we came up with for my papers provided a place for me to further explore what this had to do with disability, the way it intersected with other aspects of my identity, and the social constructs that largely determined this. I developed a very clear perspective and definitive view on disability through my writing.
Being Autistic does not inherently make me disabled. Being Autistic is simply having a brain that works differently than most. When autism is disabling, it is because of outside factors, such as lack of accommodation, or inaccessibility (such as with education), or the expectation of consistent verbal communication. I therefore rejected person first language. In fact, the first sentence of my paper read, “I am autistic” – not, “I am a person with autism.” I explained that “Saying ‘person with autism’ suggests that autism is a thing so bad that it cannot coexist with my being a person, that you must be first reminded that I am human so that when autism is mentioned it does not act to negate my human-ness.”
When I understood disability as an Autistic person, it was not something inherent to my being, it was a transient state dependent on outside factors. Being Autistic, in my experience, is not synonymous with being disabled, but rather is a cultural identity, aspects of which, when interacting with the world outside of myself, can be disabling. I was disabled, then, only within the context of a social model of disability.
Cindy
Rachel’s paper led me to question my uncritical use of person-first language and the many implications of doing so. I was compelled to re-examine my understandings of the power of individual identity and agency. Like other scholars and activists in disability studies, I had long rejected the negative stereotypes appended to disability, but the reclamation of autism as neither enabling nor disabling but simply as part and parcel of one’s self struck me as doing something new. Too, though I was familiar with critiques of second and third wave feminism for their exclusion of disability issues, Rachel cut to some of the most foundational problems with many feminist approaches to disability studies. She argued that third wave feminism, despite its rhetoric, is still afraid of disabled people and what they/we represent. She noted, “We are lack of independence, lack of power, vulnerability” (Reed, 2013, p. 3). And despite a third wave emphasis on individual autonomy, there is still a fierce attachment to notions of power (sexual, intellectual, social) that belies a commitment to disabled people because of the ways in which ableist perceptions of disability conjure up notions of dependence and disempowerment.
For these reasons, and because I included a disability studies perspective as part of a feminist analysis of embodiment, I asked Rachel if I might teach her essay in the spring 2014 Intro WMST course, and she gave me permission to include it on my syllabus. I taught two sections of the course that semester, and her essay sparked more discussion, more writing, and more introspection than any other piece we read.
And then, Rachel shared some news with me.
Rachel
In April 2014, I was diagnosed with Multiple Sclerosis. This turned my experience and perception of disability upside down, and invalidated my previously held definition of what it meant to be disabled.
Multiple sclerosis is a disease in which the immune system attacks and damages the myelin of the central nervous system, leading to scarring in the brain and spinal cord, causing unpredictable relapses which may lead to a multitude of neurological, sensory, and physical symptoms.
Now, my body is literally disabling itself. This did not fit into my definition of disability; neither was there room for the fear, loss, and unpredictability accompanying this new diagnosis. The vulnerability and unpredictability of this new diagnosis are incredibly terrifying, as is the process of accepting it, mostly due to the impossibility of coming to terms with something that is characterized by instability.
My understanding of disability relied on being able to intellectually and philosophically explain why I was disabled, based on an understanding of social context and oppressive systems that are in place. But it is disabling to experience things like pain, vision problems, and loss of physical function. These aspects of disability cannot be explained away by social context and external oppression. Neither can the experience of hospitalization, medication, and seemingly endless testing. This too is disability, and it is decidedly medical. Multiple sclerosis is disabling, based on my expectations of myself, and my own limitations. What I am now learning is how to let an openness to unpredictability of embodiment stand in where a definition once was.
Cindy
On a recent birthday, my partner asked me, “How does it feel to be 53?” and I replied, “I feel strong.” Almost three years into the first remission I’ve experienced since I was fifteen, I have been lifting weights and cross-training with a furiousness of purpose. Though I understand and have struggled with the gendered politics of my choices (am I doing this for myself or to meet a culturally-imposed standard of youth, beauty and fitness imposed upon girls and women in a sexist and hyper-mediated society?), I have also justified my choices by reference to a future exacerbation and a desire to meet it with stamina, muscle and meat that any flare-up of my Crohn’s disease will almost certainly diminish. However, I have been re-thinking my exercise regimen in light of conversations with Rachel and wonder if I might not simply be trying to fix a particular embodiment which meets not only gendered norms but ableist ones as well.
There are many issues at play here, but I’d like to focus on just one that has implications for music therapists in particular and for all of us more broadly: the potential desire and, for the present, the capacity to move back into ablebodiedness with a thoroughness long denied to me. Many of my symptoms are invisible (diarrhea is only visible if I shit myself in public or lose enough weight for others to notice), but during serious flares of iritis, I might have to wear an eye patch or dark glasses because of light sensitivity; when my arthritis flares, I might limp or have difficulty using my hands. Thus, though I cannot always hide my Crohn’s, depending on the severity of the flare-up, sometimes I can am able to “manage” more visual markers of my disease. The choice of whether or not to do so is complicated and vexed. That is even more true during this remission.
In Staring: How We Look, Garland-Thomson argues that culture is regulated visually, that “the modern world . . . is ocularcentric [and] depends on sight as the primary sensory conduit to the world” (2009, p. 25). Though many disabilities are invisible, living in a “deviant” body often negates the ability to “pass” as ablebodied. The metaphors of the closet and of passing, borrowed from critical race theory and queer theory, can apply (though perhaps less neatly) to disability studies in how they raise concerns about the oppressive nature of the closet, the in/out dichotomy (and the limits of such an essentialist conceptualization), choices about how to present in a homophobic or ableist culture, and the management generally of a stigmatized identity marker. [2]
When my symptoms have been “manageable” or, especially now that I’m in remission, invisible, I have the choice to present as ablebodied. In his essay, “Compulsory Able-Bodiedness and Queer/Disabled Existence,” Robert McGruer writes, “Like compulsory heterosexuality, then, compulsory able-bodiedness functions by covering over, with the appearance of a choice, a system where there actually is no choice” (2006, p. 303). But this is, of course, variable; my embodied changes give me some wriggle room. And though passing (whether as white if I am a light-skinned African-American or as straight if I am a lesbian or as ablebodied) carries with it its own burdens (internalized shame, guilt, self-denial), I would argue that it offers a degree of privilege as well.
Do I apologize for my leaky body? Camouflage it? Celebrate it? Theorists like Judith Butler and Tobin Siebers have argued in different contexts that making the deviant hyper-visible has some capacity to challenge cultural norms and social processes of stigmatization. Siebers uses the term “disability masquerade,” which he defines as representing “an alternative method of managing social stigma through disguise, one relying not on the imitation of a dominant social role but on the assumption of an identity marked as stigmatized, marginal, or inferior” (2008, p. 102). Borrowing from Bakhtin’s theory of the grotesque body as potentially transgressive, one whose “internal chaos threatens to externalize itself violently in the form of contagious symbolic disorder” (Pacteau, 1994, p. 128), this visible resistance to and revision of norms has the capacity to undo or at least undermine them. There is something appealing in this idea, something slightly revolutionary in the choice to showcase my disease: difference as agency, deviance as political advantage.
But the other impulse is to stabilize my remission, my “condition.” As Carol Thomas notes in her analysis of the extensive damage done by ableist prejudices, “‘everyone knows’ that being chronically ill or disabled constitutes ‘a trouble’; these are deviant and devalued social states to be avoided at all costs and, if encountered, then remedied if at all possible” (2007, p. 28). I grapple with the question of not only why “being strong” matters so much to me but also, especially as my remission holds, what I will do when and if my Crohn’s flares up again.
Intellectually, I fully comprehend that fixity of embodiment is a myth, an illusion, a bit of a cosmic joke. My own dual anxieties about moving back into a stigmatized space and of living with the corporeal messiness of Crohn’s makes me confront daily questions about embodiment in both the abstract and the particular. At a practical level, they affect my day-to-day living. Do I “come out” to students and thus risk some of my authority in the classroom? Present myself as what bell hooks calls a “whole human being” and potentially diminish my professionalism by alluding to shit in interactions with students? Do I share with my colleagues and my department chair that I have Crohn’s, understanding that this may change their perceptions of me? Do I wear an eye patch when my iritis flares without joking about being a pirate or explaining that my partner did not punch me? What happens when I present myself as “sick,” acknowledge the instability of my body? Do I sit down when my arthritis is painful? Explain the red splotchiness on my face that can accompany long-term use of steroids? How much do I owe to others to situate my embodiment? What are the costs of concealing my embodiment? And how do I accept that there are no simple, fixed answers to these questions, accept that “coming out” is an ongoing, changeable process?
Julia Epstein states in Altered Conditions: Disease, Medicine and Storytelling that “The normal, even when understood to represent a curve or continuum, remains an inchoate conception of lack of difference, of conformity, of the capacity to blend in invisibly” (1995, p. 11). Many (though certainly not all) of us benefit from the capacity to pass, to blend in “invisibly” in an ableist culture. But our belief in that capacity rests upon the myth of embodied stability, including the belief that we can “know” disability when we see it. Academically and emotionally, I live in a world (as do many, perhaps most of us) where fixing and stabilizing identity categories offers a modicum of security, control and mastery (of self, of body, of our disciplines, but also of O/others). It is scary to abandon this myth, to accept the variability of embodiment, because doing so profoundly calls into question notions of selfhood, profession, power, and what it might mean to be “whole” and “healthy.”
Rachel
What has become visible, too, is the spectrum which exists within disability, especially when it comes to “passing” for non-disabled. This works both ways; one can be grateful for the capacity to pass in the outside world, to get to be treated as “normal”, but feel skepticism about whether one is “disabled enough” to fit in within the world of disability.
This passing hierarchy also applies to the relationship between a client and therapist. The therapist often has much more of a choice about whether or not to disclose, while the client does not. This is similar in some ways to the relationship between a professor and student; as Cindy suggests, while the professor can often choose whether or not they would like to disclose, how much they would like their students to know, and how they would like to do it, the student, in order to receive any legally-mandated accommodation, is required to have the conversation with every professor explaining that they have a disability, and figuring out what kinds of accommodations are in place for them. There is clearly an imbalance in this relationship, one often mirrored between therapist and client that we need to contemplate.
I have experienced this imbalance in my own work as a music therapy student. When my disability was not visible, I passed as non-disabled when working with clients all of the time, and barely even thought about it. Recently, though, during a group therapy session, a client noticed my leg brace and asked me what had happened. Before I could answer, another client in the group told him that he shouldn’t ask that, that it wasn’t nice. I told him it was okay to ask, but had difficulty coming up with a response to his question that would answer it both in a way in which I was comfortable, and in which he would understand. I have thought about this a lot since and still don’t have an answer. While I don’t know what to say to that client when he asks me how my foot is doing, I do know that recognizing the privilege of having the choice to disclose or not means that we have to make this choice on a regular basis, because even deciding not to disclose is as active decision. The best we can do is to be conscientious and intentional. This may mean that we’ll initially respond to questions such as this with an “I need to think about it.” It may mean that we will risk talking about our own unstable bodies, or that we’ll re-conceptualize the therapist/client hierarchy, acting to purposefully transform it by engaging in conversations with that client about our own fears, uncertainties, and narratives of acceptance. And because these choices rely at least in part on our embodiment, perhaps our answers will vary.
As difficult as it may be for a therapist or teacher to disclose, the client or student is often in the same position, but with significantly less power in the relationship. It’s critical to remember and to question this, because our student/professor relationship parallels a possibility for a new balance of power which could exist between the client and therapist as well.
I think one of the main issues faced by music therapists in regard to disability is understanding it as an aspect of identity, especially if it is not something that they recognize as part of their own identity (if they are not disabled or do not understand themselves as disabled). We need to begin recognizing able-bodiedness as more than a passive aspect of identity, to understand its implications for the client/therapist relationship. A consciousness of how disability is part of our personal identity can prevent the possibly damaging application of a fixed definition of it to our clients. When we define a person by means of a medical diagnosis, when we rely on that diagnosis to determine therapy, we are limiting our clients. We are asking them to overcome, rather than to become.
The lack of stability inherent in efforts to define and demarcate disability is messy; it can be unclear and uncomfortable. While it may seem that the lack of stability causes this, I’d like to suggest that it is more primarily about the disruption or re-distribution of power between client and therapist that accompanies the shift in understanding disability from a fixed to a fluid concept. It unsettles the therapist’s identity as the helper, and makes visible the smallness of imaginary space created between able and disabled. The more solid a definition with which a person works, the further they can distance themselves from it. With an always changing and evolving definition, that safety does not exist. It interferes with the roles of therapist and client as active and passive, giver and receiver, in what could currently be understood as a “banking system” of therapy.[3]
Rachel and Cindy
In Black Bodies, White Gazes: The Continuing Significance of Race, critical philosophy of race scholar George Yancy analyzes the myriad ways in which racism is maintained by reference to black bodies and to the normalization of whiteness as neutral, taken-for-granted, invisible. In the chapter titled, “Whiteness: ‘Unseen’ Things Seen,” Yancy considers how cultural narratives can reinforce or rupture how we see ourselves and others. He argues that we need to name whiteness in these narratives and concludes that “In the process of naming their whiteness, whites must understand their role in normalizing whiteness and also understand how whiteness is a site that is dutifully maintained” (2008, p. 45, italics his). Though the analogy does not work entirely because of the liminality of ability/disability and because disability exists on a spectrum in ways which racialized/racist or sexual identities might not, his point that those in positions of embodied power need to name that privilege is applicable to our argument. Music therapists should recognize the privilege that attends (or is absent from) particular kinds of embodiment (for themselves and also for their clients) and acknowledge the privilege that is part and parcel of being the therapist in a therapist/client relationship. Naming these points of privilege has the capacity to change the cultural narrative about disability, about “health,” and about the nature of “help.”
We are suggesting, then, that it is critical to resist and to destabilize easy, fixed notions of many of the terms which frame and inform music therapy and disability studies. We’re not trying to replace or utterly negate current definitions of or groundwork for either field but to encourage current and future music therapists to practice self-reflection and to attempt to establish a comfort level with the utter ambivalence of the concepts and terms upon which music therapy rests.
Questions to Ask Ourselves
- How might music therapists better understand their own embodiment? Understand how that embodiment shapes access to power and privilege, and how changing embodiments (age, illness, weight gain or loss, disability) might alter that access?
- How might we address issues of embodiment (our own but also our clients’) in therapeutic relationships?
- How might we question body norms and the cultural impulse to fix or stabilize embodiment, especially in terms of an artificial and culturally maintained ablebodied/disabled binary?
- What does “health” look like, and how might asking questions about potential ableist biases in our definitions of health and wellbeing complicate our answer(s) to this question?
- What does “help” look like? How might help enact power dynamics and negotiations, and what steps might we take to be aware of and deal with these dynamics?
- Though credentials are important, how might an emphasis on them reinforce or reproduce an ablebodied/disabled ideology in the therapist/client relationship?
Conclusion
While we find definitions suggesting specific or fixed concepts of things such as “health”, “goals”, or “strengths and needs” to be problematic, it is more so because of the definition of disability as pathology, rather than as an aspect of identity or of social context, which they often imply. Though defining the work of music therapy in this way is often necessary in order to justify it within a medical model, it is important to recognize that a compromise can still be made to allow for ever evolving and subjective definitions of both disability and music therapy. Therapy is about change, and this needs to be reflected in our process of understanding and defining anything related to it. To do this, we must be aware not only of our clients’, but of our own relationship to disability -- socially, culturally, and as a marker of identity.
While the language in definitions of music therapy can be problematic, so is the notion that the therapist can escape ableist norms while working with a client to establish goals. Therapists need to become conscious of how their own embodied privilege or personal experience of disability affects their definition of disability and their comfort with the unavoidable instability of the subject, and therefore the effects of this on work with clients.
Our own experience of co-authorship has been an experience in the challenges and rewards of an intentional contemplation of and confrontation with fluidity – of embodiment, of our disciplines, and of our interactions with each other. At one point, during a late writing conference as the deadline for this paper was nearing, Cindy said, “This is fun” and Rachel replied, “’Fun is subjective.” We both laughed. The writing of this paper has been an experience in (further) unsettling a teacher/student relationship. We have experienced not only the disruption of embodiment but the disruption of hierarchy. Both experiences have been scary, wonderful, unsettling, and exhilarating. We are not simply suggesting or advising you do this, but providing an example through the enactment of our suggestions which this writing has become.
Ours is a dialogue without real resolution, because foreclosing it would negate our position: that we live with existential ambivalence and that we need to continue to question our own bodies, our own understanding of the intersecting terms that constitute both the fields of music therapy and disability studies, and that trying to stabilize embodiment freezes in potentially harmful ways concepts of “health,” “accomplishment of individual goals,” and recognition of the “strengths and needs of” our clients but also of ourselves. The challenge that we face, then, is to live with a radical instability, to be as comfortable as possible with a profession which references always-shifting and essentially unfixed concepts. In other words, to live with bodies and in a world where there is no identifiable “end” to this conversation.
Notes
[1] We use the terms “able-bodied” and “disabled” with reservations, recognizing that they shore up a binary way of understanding embodiment as either/or and potentially shoring up the hierarchy that accompanies that binary. The terms are limited and problematic but are currently the most accessible “short-hand” available to us.
[2]In Stigma: Notes on the Management of a Spoiled Identity, Erving Goffman analyzes how different kinds of stigma affect both “normals” (sic) and those thus stigmatized. Though the language of his argument often reproduces prejudice, he also and somewhat radically, for the time, argues that stigma and the perception of stigmatized individuals as “tainted, discounted” is socially produced, reviews how people who are stigmatized might “manage” social bias, and suggests that stigma needs to be understood as “a language of relationships, not attitudes” (1963).
[3]In his foundational book, Pedagogy of the Oppressed (1963), Paulo Freire condemns what he calls the “banking system of education,” whereby knowledge is bestowed by all-knowing teachers upon ignorant students, where lectures are “deposited” into students as part of a strategy of keeping students disempowered. Freire writes, “Projecting an absolute ignorance onto others, a characteristic of the ideology of oppression, negates education and knowledge as processes of inquiry” (1963) and argues that education needs to foster innovation, critical inquiry, and dialogue to dismantle the teacher/student hierarchy and, by extension, an empowered/disempowered model of governance.
References
Davis. L. (2006). Constructing normalcy: The Bell curve, the novel, and the invention of the disabled body in the nineteenth century. In L. Davis (Ed.) The disability studies reader, Second Edition. (pp. 3-16). New York and London: Routledge.
Epstein, J. (1995). Altered conditions: disease, medicine, and storytelling. New York and London: Routledge.
Freire, P. (1963). Pedagogy of the oppressed. NY: Penguin.
Fries, K. (Ed.) (1997). Staring back: The disability experience from the inside out. New York, NY: Plume.
Garland-Thomson, R. (2009). Staring: How we look. New York, NY: Oxford University Press.
Goffman, Irving. (1963). Stigma: Notes on the management of a spoiled identity. London: Penguin.
Linton, S. (1998). Claiming disability: Knowledge and identity. New York and London: New York University Press.
McGruer, R. (2006). Compulsory able-bodiedness and queer/disabled existence. In L. Davis (Ed.), The disability studies reader, 2nd edition. (pp. 301-308). New York and London: Routledge.
Pacteau, F. (1994). The symptom of beauty. Cambridge, MA: Harvard University Press.
Reed., R. (2013). Untitled paper for Introduction to Women’s Studies.
Samuels, E. (2011). Critical divides: Judith Butler’s body theory and the question of disability.” In K. Hall (Ed.), Feminist disability studies. (pp. 48-66). Bloomington and Indianapolis, IN: Indiana University Press.
Siebers, T. (2008). Disability theory. Ann Arbor, MI: The University of Michigan Press.
Thomas, C. (2007). Sociologies of disability and illness: Contested ideas in disability studies and medical sociology. New York, NY: Palgrave.
Yancy, G. (2008). Black bodies, white gazes: The continuing significance of race. New York: Rowman & Littlefield Publishers, Inc.
