[Special Issue on Music Therapy and Disability Studies]
"But You Don’t Look Sick": Dismodernism, Disability Studies and Music Therapy on Invisible Illness and the Unstable Body
By Samantha Bassler
Abstract
Invisible illness poses a unique problem vis-a-vis disability and society, since invisible illness does not present itself outwardly and does not easily mark a person as having a disability. Using Lennard Davis's understanding of dismodernism as a guide, this essay explores the cognitive dissonance of invisible illness and instability in the body, examining the juxtaposition of disability studies and music therapy using the unstable and invisible difference of the body as a case study. The purpose of the essay is to propose a meeting ground between disability studies and music therapy, and suggest further avenues for working together to promote greater understanding and compassion for persons living with invisible illness.
Introduction
The aim of the following exposition is threefold: first, to define invisible illness vis-a-vis disability and the body, and elucidate the positions of both disability studies and music therapy on the supposed problem of invisible illness; second, to examine the juxtaposition of disability studies and music therapy using the invisible body as a case study; and third, to pose a meeting ground between disability studies and music therapy, and suggest further avenues for working together to promote greater understanding and compassion for persons living with invisible illness.
The Place of Invisible Illness in Disability Studies and Music Therapy
The term “invisible illness” refers to an illness which affects the body, but is not visually or readily apparent to the onlooker. An invisible illness may be temporary or curable, such as a non-threatening virus, or it may cause a long-term invisible disability, such as in the case of autoimmune diseases like rheumatoid arthritis and diabetes. Invisible illnesses pose a unique problem for healthcare workers, music and other therapists, and onlookers, in that invisible illnesses may be difficult to diagnose, treat, and understand, especially for persons who do not regularly suffer from an invisible illness or disability. Of course, all of us have suffered from an invisible illness at some point in our lives, as most of us have had the flu or another virus that is not visually apparent. This is part of the instability of the body, which includes an invisible component—an invisible body: our organs, muscles, bones, ligaments, our brains and cognitive function, and so forth—we are unaware of as a part of our conscious lives. An interaction with a person who has an invisible illness can be uncomfortable for the able-bodied person, since persons with invisible illnesses are a hallmark of what all persons will one day face, or may not be an unknown or undiscovered aspect of the invisible body: the breakdown of their bodies as a natural part of aging, the anxiety of possessing a disease or illness that silently occupies the body and is yet to manifest and affect the body.
In the literature of disability studies and music therapy, the invisible illnesses discussed most frequently are mental illnesses or disorders, and behavioral differences, such as the neurodiversity of the spectrum, commonly discussed as the "disorders" of Asperger’s Syndrome and autism (see James et al, 2014). In the language of music disability studies, mental illnesses and all other forms of mental and physical disability or difference are viewed as a social construct: another form of living and experience, which is constructed by society to be disabled and disordered (see Straus, 2014; Headlam, 2006). In the seminal work on music and disability, Extraordinary Measures: Disability in Music (2011), Joseph Straus invokes Simi Linton’s notion of “claiming disability”, which, as fleshed out by Tobin Siebers (2008), views disability “as a positive political and cultural identity” (Straus, 2011, p. 9; Siebers, 2008, pp. 3-4; Linton, 1998). Straus defines disability as
[A]ny culturally stigmatized bodily difference. By “difference,” I refer to deviation from whatever is understood as normal at a particular time and place. As with gender, race, and sexual orientation, the construction of disability involves the opposition of a normative standard (e.g., male, white, straight, able-bodied) and a deviant Other (e.g., female, non-white, gay, disabled). Indeed, femaleness, non-whiteness, and gayness can all be understood as forms of disability ... . Disability is the "master trope of human disqualification," the fundamental form of deviant Otherness of which gender, race, and sexual orientation are specific manifestations. (Straus, 2011, pp. 9-10)
In disability studies, anything qualifying as "cognitive and physical functions that deviate from normative ideas of mental ability and physiological function" (Mitchell & Snyder, 1997, p. 2) is a disability, which scholars of disability studies would maintain is merely constructed by society. Disability is "a pervasive cultural system that stigmatizes certain kinds of bodily variations.... disability is a culturally fabricated narrative of the body, similar to what we understand as the fictions of race and gender. The disability/ability system produces subjects by differentiating and marking bodies” (Garland-Thomson, 2004, pp. 76-77). Therefore, anything outside of society’s perceived norm can be construed as disability, or a supernatural ability, which is nevertheless abnormal. Mental illnesses—commonly discussed in cultures as “madness”—then pose a peculiar problem, as they do not mark the body, and yet can render it incapable or abnormal, due to a condition or extra-normal experience, or function, of the mind. Invisible illnesses and diseases or conditions, then, pose an even greater problem, as they mark the body inwardly and do not usually demonstrate an outward marker of disease. Whereas socially-constructed diseases of the mind often present through behavior or actions, invisible illnesses or invisible disease of the body might not present outwardly at all. Therefore, persons with invisible ailments present as “normal” to the onlooker, and yet require special accommodation and consideration in order to function “normally” in society. However, when given the accommodations required, most are able to function and complete responsibilities (Bassler, 2009).
The main difference between disability studies and music therapy, apparent through the language used to describe disability studies, is the absence or presence of what disability studies commonly terms “cure narratives”, or the medical model. A music therapist who employs the medical model would view a person with psychological, cognitive, or bodily difference as in need of remediating.
Health care professionals who adhere to this model interpret disability as an illness or impairment, and disability is seen as fixed in an individual's body or mind. Since the so-called problem is seen as residing solely within the individual, the focus of treatment is therefore to fix the individual, ... . Because of its focus on physical impairments, the medical model of disability is particularly limiting for conceptualizing and describing cognitive, intellectual, and psychiatric disabilities (Smart, 2001, cited in Da Silva Cardosa & Chronister, 2009, pp. 24-25). A frequently mentioned negative consequence of the medical model is that it places no obligation on the society in general (Cocks, 2006, cited in Da Silva Cardosa & Chronister, 2009, pp. 24-25). The medical model is highly hierarchical and the paternalistic view towards people with chronic illness and disability is known as the omniscience of the experts (Smart, 2001, cited in Da Silva Cardosa & Chronister, 2009, pp. 24-25).
Disability studies scholars, such as Tobin Siebers, would argue that the medical model is prevalent throughout social and cultural discourse, whether adhered to by a music therapist or another healthcare professional, or not. Examples of the medical model and the preponderance towards finding a “cure” or fix manifest themselves within literary fiction, which often require a literal cure narrative to resolve a disabled character’s impairment. David Mitchell and Sharon Snyder have termed this the “prosthetic narrative”: “the formulation [of the prosthetic narrative] is one in which aberration from the "norm" at the level of character serves as a catalyst for narratives that seek to account for that aberration” (Wood, 2009). Mitchell and Snyder maintain that
[N]arrative prosthesis is meant to indicate that disability has been used throughout history as a crutch upon which literary narratives lean for their representational power, disruptive potentiality, and analytical insight. ... [D]isability is foundational to both cultural definition and to the literary narratives that challenge normalizing prescriptive ideals. ... [D]isability provides an important barometer by which to assess shifting values and norms imposed upon the body (Mitchell & Snyder, 2000, p. 49 and p. 51).
Similarly, in a 2010 interview, Tobin Siebers argues that disability aesthetics is valuable due to its new insight into the nature of a human being. Disability aesthetics sheds new and different light on human beings who are considered disabled, and engages critically with the relationship of society and cultural values to the disabled. “At the same time, it contributes to an age-old concern about what you call human weakness. It asks us to set down this usage, to understand that ability is not one-dimensional, that there is a great diversity in the ways that human beings belong to and contribute to the world.” (Levin, 2010)
Therefore, the project of disability studies is to break down the binary opposition between ability and disability, between disability and normalcy, and to advocate for acceptance of disabled conditions as a new normal. This is problematic for healthcare workers who advocate for the medical model, and who aim to cure or reduce the manifestation of disability, and also for individuals with chronic illnesses and invisible disabilities. While the project of disability studies is attractive to anyone who lives with chronic pain and cognitive difficulties, the cure may be even more attractive and even more desirable. Why would someone with chronic illness, such as extreme fatigue, pain, anxiety, or depression, want to continue living with these constant invisible signifiers of difference and sources of discomfort? This, indeed, is the important question. If music therapy can ameliorate such conditions, or offer even a short respite from these chronic ailments, why not accept such relief?
Having defined invisible illness as it relates to disability studies and music therapy, I will examine the relationship of disability studies and music therapy to the invisible body. I define the invisible body as the components of the body which are not visible, but which of course play a vital role in the subconscious life. This is the crux of the argument for or against cure narratives, and is a meeting ground for music therapy and disability studies. As Lennard Davis asserts, disability is both a bodily state and also an identity. For persons with invisible disabilities, disability is a complicated identity. A person with chronic illness may identify as disabled, but not present as disabled, and therefore might not be an obvious candidate for inclusion into the identity group of disability. The remainder of this essay will explore how persons with invisible illness, and invisible bodily difference, might find inclusion into disability identity, and how music therapy and disability studies can contribute to this inclusion.
The Invisible Body and Interactions of Disability Studies and Music Therapy
Lennard Davis asserts that disability, as with race, gender, and sexual orientation, is undergoing a reexamination, and could be “the identity that links other identities, replacing the notion of postmodernism with [what Davis calls] ‘dismodernism’ ” (Davis, 2002, pp. 13-14). Outlining reasons for the instability of the body, Davis argues that since ideas of the body were created by Renaissance and Enlightenment thinkers, a new postmodernist ethics of the body is needed: one which recognizes both scientific advancement since the Enlightenment, and the difficulty of a simple theory of bodily identity (Davis, 2002, pp. 15-22). Davis posits that disability is the logical starting point for creating a new ethics and identity politics of the body, and for dealing with the instability of the body (Davis, 2002, pp. 22-23). Disability is similarly unstable: using the Americans with Disabilities Act as an example, it is clear that disability could constitute a large majority of persons, and includes many various impairments, including diseases and conditions, such as obesity, diabetes, chronic pain and fatigue, severe facial scars and other skin conditions, arthritis, and more. Furthermore, given that advanced age increases the number of disabled persons, as populations grow older, there is a higher instance of disabling conditions and diseases, such as cancers, osteoarthritis, mental illness, diabetes, organ failure, chronic pain, and congential heart disease (Davis, 2002, p. 24). Similarly, disability can occur as a result of accidents, and a formerly normalized body can be rendered disabled in an instant. The reverse is also true, since many infectious diseases or viruses are curable through advances in modern medicine (Davis, 2002, p. 25), and chronic illness or cognitive difference may be ameliorated through music and other therapies (James et. al., 2014; Novotney, 2013; Maratos, Gold, Wang, Crawford, 2008; Maratos, Crawford, Procter, 2011). Rather than pursue an essentialist theory of disability as a organized identity system of persons who can qualify within the binary opposition of disabled vs normal, which as evidenced by Davis has been unsuccessful with the other identity projects of race, sexual orientation, and gender, disability can be a window into pursuing the unstable nature of identity. Postmodernism has dismantled essentialist theories, and dismodernism embraces difference as the common factor for all persons:
The dismodern era ushers in the concept that difference is what all of us have in common. That identity is not fixed but malleable. That technology is not separate but part of the body. That dependence, not individual independence, is the rule. There is no single clockmaker who made the uniform clock of the human body. What dismodernism signals is a new kind of universalism and cosmopolitanism that is reacting to the localization of identity. It reflects a global view of the world. To accomplish a dismodernist view of the body, we need to consider a new ethics of the body. As the quadriplegic is incomplete without the motorized wheelchair and the controls manipulated by the mouth or tongue, so the citizen is incomplete without information technology, protective legislation, and globalized forms of securing order and peace. (Davis, 2002, pp. 25-7; p. 30)
Applying Davis’s theories to invisible diseases, this means that the instability of the body does not disqualify anyone from the identity of disabled, but adds to its success as a dismodern subject. In a way, the disabled are the embodiment of the dismodern subject, and invisible disability is the quintessential disabled subject. Therefore, music therapy does not cure the disabled subject of the disability, but is another prosthesis—like technology, the motorized wheelchair, protective legislation, and government—for existing as a dismodernist subject.
Further Avenues for Research and Activism
The dismodernist subject, then, could be a meeting ground between disability studies and music therapy, and the meeting ground of the invisible body with invisible disease could be its first case study. Music therapy, when integrated with disability studies, can function as a disablist therapy, which serves as a prosthesis for the dismodernist subject. Susan Hadley (2006) advocates a similar approach with feminist perspectives on music therapy, which integrates feminist therapy and music therapy, embracing the personal as political and the political as personal. The approaches to music therapy put forth by contributors of Hadley’s 2006 volume are deeply entrenched in feminist values, and yet pursue values of music therapy which can work in concord with feminism. I would like to imagine disability research which fully embraces the social model of disability, and yet recognizes the impossibility of essentialist view of disability versus normalcy, through pursuing a dismodernist subject. And, the ultimate instability of the invisible disease might be an ideal window into exploring the dismodernist subject.
References
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